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Learn more about your body, health and sexuality

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RFSU is a non-profit Swedish organization that works towards a world in which everyone is free to enjoy, and make decisions about their own bodies and sexuality.

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The Spotting the Signs Tool is designed to enable professionals who work with young people to better recognise CSE and CCE and safeguard young people.

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Stop It Now | Preventing child sexual abuse

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Online self-help and confidential Stop It Now helpline for anyone worried about child sexual abuse, including their own thoughts or behaviour.

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A person mentioned in subsection (1A) (" ") may by complaint to a magistrates' court apply for an order under this section (a "sexual risk order") in respect of a person (" ") if it appears to the applicant that the condition in subsection (2) is met.

"harm" from the defendant means physical or psychological harm caused by the defendant doing an act of a sexual nature;

" vulnerable adult " means a person aged 18 or over whose ability to protect himself or herself from physical or psychological harm is significantly impaired through physical or mental disability or illness, through old age or otherwise.

Sexual risk orders: requirements included in order etc.

The person may be an individual or an organisation.

to inform the appropriate chief officer of police.

These obligations have effect as requirements of the order. ]

Any renewed or varied order may contain only such prohibitions as are necessary for this purpose.

In this subsection "adult magistrates' court" means a magistrates' court that is not a youth court.

The court may, if it considers it just to do so, make an interim sexual risk order

Subsections (2A) and (3A) apply in relation to an application for the variation or renewal of an interim sexual risk order as they apply in relation to an application for such an order. ]

If the Director General of the National Crime Agency, the chief constable of the British Transport Police Force or the chief constable of the Ministry of Defence Police makes an application under this section, that person must as soon as practicable notify the chief officer of police for a relevant police area of that application.

must, within the period of 3 days beginning with the date of service of the order, notify to the police the information set out in subsection (2) (unless the person is subject to the notification requirements of this Part on that date).

must, within the period of 3 days beginning with the date on which that happens, notify to the police that name or (as the case may be) the new home address.

Offence: breach of sexual risk order or interim sexual risk order

commits an offence.

an offence under section 34 of the Abusive Behaviour and Sexual Harm (Scotland) Act (breach of sexual risk order or interim sexual risk order in Scotland);

the defendant remains subject to the notification requirements.

where the conviction, finding within subsection (1) is in respect of a breach of a sexual risk order or a risk of sexual harm order, that order;

where the conviction, finding within subsection (1) is in respect of a breach of an interim sexual risk order or an interim risk of sexual harm order, any sexual risk order or risk of sexual harm order made on the hearing of the application to which the interim order relates or, if no such order is made, the interim order.

A person's age is treated for the purposes of sections 122A to 122J and this section as being that which it appears to the court to be after considering any available evidence. ]

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An Act to make new provision about sexual offences, their prevention and the protection of children from harm from other sexual acts, and for connected purposes.

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During the summer of 2022, the NEST project (then called Neurodiversity Alliance) co-designed materials to facilitate neurodivergent peer support in mainstream schools. This involved working with neurodivergent young people and the people who support them gather their views and input on peer support materials. The co-designed materials have been trialed and evaluated in four Scottish high schools.

The NEST handbook:

​Provides information about neurodiversity, neurodivergence, and peer support.

​Explains who NEST groups are for and what the ethos of NEST groups is.

​Provides guidance for setting up and running a NEST group, including how to ensure the groups are student led, activity ideas and resources, and safety considerations.

​Provides information about some of the policies and legislation that align with NEST-based groups.

The handbook will help you to decide whether to set up a NEST group in your school, and if so, how to do it.

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NEST (NEurodivergent peer Support Toolkit)

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NEST (NEurodivergent peer Support Toolkit) is a suite of materials to facilitate peer support for neurodivergent young people in mainstream secondary schools. The toolkit has been co-created by researchers at the University of Edinburgh, neurodivergent young people and a neurodiverse group of adults who work with neurodivergent young people.

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This short film in British Sign Language (BSL) about what is consent was commissioned by SignHealth with funding from the Home Office.

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Bish Training - Sex & Relationships Education

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You might have either seen the tea and consent video, or read the original blog (which I much prefer). They are increasingly being used as a teaching tool, which I don't think is a great idea. So I thought I'd share my thoughts about what the analogy needs to be a more useful resource and why I think there are better analogies. You might also want to check out my new Consent Teaching Pack, for other unique activities for people to learn how to do consent.

Tyranny of Tea - societal pressure

The tea video goes straight into the interaction about whether someone wants tea or not. However it would be really useful to first of all point out the tyranny of tea and how it seems to be so essential to our very existence. We all receive messages (particularly in the UK and Ireland) about the importance of tea: 'we're a nation of tea drinkers', 'let's sort the problem out over a cup of tea', the national institution of afternoon tea. Even one of the UK national sports has a break specifically to drink the stuff.

This also plays out with the people around us which: 'the kettle's on', 'there's tea in the pot', 'we're all having tea', 'I'm having a brew do you want one', ' go on have a cup of tea '. It's presented as such a benevolent, harmless and normal thing that we can feel very abnormal for not wanting tea - or any hot caffeinated drinks at all - which puts us under a lot of pressure to get used to drinking it (even if we really don't like it).

Same with sex right? Sex is seen as such a benevolent, healthy and normal activity that everyone is expected to do it. To not want sex at all: because someone isn't interested, or wants sex in a committed relationship, is practicing celibacy, or is asexual is seen as so unusual that people receive tremendous stigma about it.

Tea is for everyone - sex isn't

However although pretty much everyone is expected to drink tea, and receives status if they do so, it's not the same for sex. Only some people are seen as being able to have sex (e.g. not disabled and over 16 but under 50) and some people get status for doing it and some stigma. When we factor in all of our different identities (e.g. genders, sexual identities, age, race, class, disability, HIV status, etc) we might find that sometimes we are given more or less status or stigma around our sexuality depending on our oppressions and privileges.

Often this is played out between what men are taught about sex (e.g. lad points, real man, stud, men love sex all the time) and what women are taught (e.g. slut, slag, sket, women are not meant to like it). But think about all the other messages that people hear from different groups and add them all together if this applies. These powerful messages come from everywhere and are played back to us from an early age until now, sometimes consciously and directly but often not. They are very difficult to escape or deal with or process and they can have a huge affect on our sexual decision making and our sense of agency.

If we factor in another person (or people) here then we can see that we may often have more or less power in a sexual encounter - we need to be able to have a sense of this with the people around us, in all encounters, not just sexual. However because of the seeming convergence of sex and relationships (the idea that we 'must' have sex if we are in a relationship and that the only time sex is allowed is when we are in a relationship) this also means that there is often a difference in power in relationships too. I'll reflect on this a bit later on.

What counts as tea - normative scripts

If I ask for 'a cup of tea' in the UK I know what I'm going to get: English/Irish breakfast blend with some milk. There's a very strong script of what counts as tea - anything else is a bit exotic, or specialist, or frankly sometimes just not tea. Maybe you might get asked how strong you like tea (how much milk you want), or how many sugars, but that's it.

Same with sex right? A huge part of consent is recognising that the choices we make are massively restricted by the messages about what it is that we are allowed to do. Sex is penis in vagina sex: anything else is seen as exotic, specialist or frankly just not sex. This kind of sex is the only game in town and we're under a lot of pressure to do it even if we don't want to. And of course if we don't have the bodies that can do penis in vagina sex then we are excluded altogether.

Not saying no - power in relationships

Like many people I often imagine Nigella Lawson asking if I'd like a cup of tea. I don't think that I could do anything other than say 'yes please, I'd love a cup of tea' even if I didn't actually want a cup of tea. I don't think there's any way I could be cool and say something like:

'sure, what kind of tea do you have in mind'
'how are you going to brew it'
'are you having the same or would you like me to make you something different?'

I'd just nervously agree to the tea because I really really fancy her and just want her to like me (or for her not to dislike me).

I think if the tea arrived and I didn't like how she brewed it (e.g. she used a tea bag and even put the milk in before taking the tea bag out) I think I would drink the tea anyway. I think I would even pretend it was a really great cup of tea even if I thought it was terrible. I'd probably make sure to drink all of it even if it was a giant seemingly endless mug of tea. I wouldn't want her to think that I didn't enjoy it and I'd also feel guilty about not drinking a cup of tea that someone had offered me and spent some time preparing even though I didn't want it in the first place.

In the tea video there's nothing about the power of societal and cultural scripts and messages about what counts as tea, but there's also nothing about the power in interpersonal relationships. Interactions about whether people have sex or not often involve higher stakes than negotiations about a cup of tea and often the stakes can be higher for one person than it is for another.

In my example about me and Nigella, to her offering a cup of tea might be a kind but mundane gesture, to me it would mean something entirely different as it might mean acceptance or interest from a famous person I fancy a lot. Imagine how I would feel if Nigella asked me out on a date!

But enough about Nigella and me (*swoon*), power exists where people know each other too. For example in a long term cohabiting relationship turning down a cup of tea, or asking for a different kind of tea or different kind of drink altogether, or having a cup of tea given to you even if you didn't ask for one is no big deal. But if we substitute tea for sex here, it can be a huge deal. Also the pressure to have sex in a 'love' relationship is huge and often people think that because they are in love they should have sex - whenever their partner wants. Or sometimes the word love can be used to coerce people into sex: 'but I thought you loved me?'

We can't step outside of the messages of culture and society but it's also difficult to step out of the almost inevitable power differences between people and this can have a huge impact on how much agency we feel we have. We can see that this stuff is actually quite complicated. It's also about far more than just yes or no.

Tea might be yes/no but sex isn't

One of the biggest problems when we over simplify conversations about consent is when we boil it down to a one time yes or no negotiation. I've worked with and listened to many many people (thousands) about consent and sexual encounters and it's clear to me that we need much more than a yes means yes and no means no understanding of consent. From the student who said: "so if two people have sex and neither of them says yes or no, is it consensual sex?" to the woman who when I asked whether sex was consensual or not she said "yeah I didn't say no, so it wasn't rape." On the one hand of course yes means yes and no means no, and the absence of a no does not mean a yes, but we all need much more than this very simple message to understand how consent feels for us and how to practice it.

The ability to use words to get and give consent is great for people who are confident enough to say 'would you like to have sex?' or 'yes I would like to have sex'. But many people just aren't able to do that - see above about agency, power and who is allowed to have sex. Even if people were able to do this, that agreement only applies at that fixed moment in time. Tea might be a one off decision resulting in a binary result of having tea/not having tea, but sex isn't.

Checking in and paying attention

So going back to Nigella. I'd like to think that she's pretty cool and understands that there is a power dynamic going on and that even though I said 'yes' to the tea I might actually be pretending to enjoy it.

So I reckon she might pay really close attention to whether I really wanted the tea: how enthusiastic was I in my response, did I seem happy when she put the mug down, what my facial expressions are when I'm drinking it, am I making noises indicating enjoyment, how quickly I'm drinking it, how much I drank. I think she'd check in with me afterwards too. I'd like to think that at any point if I seemed unhappy she'd offer to make me another drink, or very gently give me permission to leave it, or not make a big thing about not taking it with me when we move into another room.

Maybe you could try this the next time you have a cup of tea with someone?

Sexual consent isn't a one time yes, no negotiation. It's a constant series of decisions, negotiations and communications. If someone has clearly and verbally agreed to sex, or whether they are following a script for sex (e.g. kissing, 'foreplay', penis in vagina), it's important to keep paying attention to them and to check in if we're not sure that they are enjoying it, or at least not not enjoying it. This is where the tea analogy really falls down in my view.

Closes down conversation

Many people have said that it's not a perfect analogy but at least it opens up the conversation about consent. Mmmm maybe. I think the tone of the blog and the tone of the video are kind of different. The video implies that consent is all very simple: if someone doesn't want tea don't give them tea, if someone is asleep they can't consent to tea, don't give them tea. In my view the tone of the video is there are smart people who get this and there are stupid people that don't.

I don't think so. I think it's totally possible to understand this view of consent but also to act in a non-consensual way. I think it's also good to reframe the 'they' to a 'we' because I think the video creates this idea of an 'other' or a 'them and us'. We are all capable of behaving in consensual and non-consensual ways when it comes to sex, bodily contact and social situations - all of us.

If we're sleeping over with someone how to check if we can touch each other in the middle of the night. Knowing what to do with our hands when snogging. Not touching people on the dancefloor or at a gig without any communication that that is what they wanted. Hearing other people when they say they don't want another drink. Respecting people when they want to stay in. Asking if holding hands or hugging is okay. Being able to ask open questions rather than closed ones. Understanding that it's harder for some people to say what they want for dinner than others. Asking before we touch or hug people.

Why doesn't this work as a sex education tool? It's simplistic but it's also just about knowledge. I think it's completely possible for someone to remember every word of the video and not behave consensually. Good sex and relationships education is about skills (e.g. communication), values (e.g. understanding power difference) and our own feelings (e.g. what it feels like for someone to really respect what you want). The tea thing isn't very people centred. If you're going to run a workshop or a class about consent you need to give people an opportunity to really explore their own actions and how this feels for them. It's maybe a useful thing to share on social media and say 'have you seen this?' but really, has it helped you to understand consent? Has the way you've though about consent changed? Have your behaviours changed at all after watching the video?

Folk are tired of just being told what to think. Good SRE is about giving people the space to think critically and a safe space to reflect on their own stuff. This is why I prefer working with an experiential learning method around consent - such as handshakes, which Meg John Barker and I have been working on. Go and check it out, it's totally free. MJ and I have done this with therapists, teachers, youth workers, academics, young people at school and Uni and even paying members of the general public - it works really well.

If you're working with over 14s you might want to sign up for free support, resources and lesson plans (written by me and Alice Hoyle with advice and guidance from Meg John) to deliver a unique six week SRE programme which is all about self (and power), what is expected of us, love, consent and reducing risk. Check out DO... it's all free.

For a post about how consent might feel go here, for how to put that into practice go here,

If you'd like to book a training course with me on consent for up to 16 people go here. Or if you would like me to come and teach it in person go here.

© Justin Hancock, bishtraining.com 2015

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"Have You Seen That Tea and Consent Video?" - Bish Training - Sex & Relationships Education

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You might have either seen the tea and consent video, or read the original blog (which I much prefer). They are increasingly being used as a teaching tool, which I don't think is a great idea. So I thought I'd share my thoughts about what the analogy needs to be a more useful resource and why I think there are better analogies.

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In Re IH (Observance of Muslim Practice) [2017] EWCOP 9, Cobb J had to decide two questions in relation to a 39 year old Muslim man with profound learning disabilities, namely whether it was in his best interests (1) to fast during the daylight hours of Ramadan; and (2) for his axillary (i.e. underarm) and pubic hair to be trimmed, in accordance with Islamic cultural and religious practice insofar as it was safe and reasonable to do so.

IH spent the first 35 years of his life in a Punjabi speaking home within a Muslim community in West Yorkshire before moving to a supported living placement arranged by his local authority and funded by the CCG. His parents were of the Sunni denomination of Islam, and were described in the court papers as 'devout'. When IH was living at home, he participated in, to the extent he was able, and was certainly exposed to the routine religious practices and observances of the family. Cobb J accepted the expert evidence of the psychiatric expert, Dr. Carpenter, "that he would have had no real appreciation of the religious significance of these rituals even if he enjoyed the regularity with which they were performed, and appreciated an increasing familiarity with them." IH had never been expected to fast during Ramadan. His father had personally shaved his pubic and axillary hair whilst he was living at home and for one year beyond (i.e. until 2014).

According to the evidence summarised by Cobb J, IH's impairments meant that he did not have any understanding of religious matters nor of the consequences of hair removal or fasting, nor was he capable of meaningful communication over abstract issues.

The local authority recognised the importance of facilitating the religious observances even of those who lack capacity. They provided, for instance, IH with a Halal diet even though IH himself would not know that the food he ate was Halal, or the significance of the source and/or preparation of the food. As an aspect of this, they decided in 2015 (apparently in agreement with TH) that staff members would carry out the "hair removal" on IH every two weeks though this in fact did not happen.

IH, through the Official Solicitor, made the application for a declaration that it was not in his best interests to fast during Ramadan. His father, TH, applied for a declaration in relation to the trimming/removal of his hair. This was initially couched on the basis that this was a religious duty, although ultimately this ended up being refined into the version set out at the outset.

Although there was no dispute as to IH's lack of capacity, Cobb J outlined the information relevant to the two decisions.

In order have capacity to make the decision to fast for Ramadan, Cobb J held a person would be expected to understand (and presumably also retain, use and weigh):

1. i) What fasting is; the lack of food and liquid, eating and drinking;

2. ii) The length of the fast;

iii) If for religion, for custom (family or otherwise), for health-associated reasons, or for other reasons;

1. iv) If for religion reasons, which religion and why;

2. v) The effect of fasting on the body;

3. vi) What the consequences would be of making a choice to fast and the risks of choosing to not fast or of postponing the decision.

Trimming/removal of pubic or axillary hair
To have the capacity to make a decision in relation to the trimming or removal of pubic or axillary hair for religious or cultural reasons, Cobb J a person would be expected to be able to understand:

1. i) Which parts of the hair are being removed - pubic, axillary, perianal, trunk, beard, leg, torso, or head;

2. ii) Whether the reason for the hair trimming/removal is religious, for the maintenance of good hygiene, custom, or some other;

iii) If for a religious reason, which religion and why;

iv) What the consequences would be of making a choice to have hair trimmed/removed, and of not trimming/removing the hair.
The requirements of Islam
Cobb J, expressly directing himself by reference to the Supreme Court's guidance as to the meaning of best interests in Aintree, heard from a lecturer in Arabic and Islamic Studies (Dr Mansur Ali, from Cardiff University) so as to be able to gain a true picture of the importance of the place of fasting and the trimming/removal of pubic/axillary hair for IH.

Cobb J outlined in some detail what he had been advised by Dr Ali:
Islamic religious observance for those without capacity. 26. The Five Pillars of Islam ('shahada' [faith], 'salat' [prayer], 'zakat' [charity], 'sawm' [fasting] and 'hajj' [pilgrimage]) are the foundation and framework of Muslim life, and are regarded as obligatory for Muslims. Not all actions or observances within Islam, however, are obligatory; some are recommended, others optional, some actions are reprehensible, and others prohibited. In Islam, a Muslim will commit a sin if he/she violates something which is obligatory or prohibited, will be rewarded for carrying out something which is recommended; a minor sin is committed for not doing something which is recommended, and for doing something which is reprehensible. 27. .Significantly for present purposes, Islam stipulates different arrangements for those who lack 'legal competence'. 'Legal competence' in Islamic terms is defined by Dr. Ali as "a capacity or a potential for mental functioning, required in a decision-specific manner, to understand and carry out decision-making. Competence is always presumed; its absence or inactivity has to be affirmed by a court." It is normal (per Dr. Ali) to defer to medical practitioners or experts on the issue of legal (mental) competence; their opinion would be likely to be deemed valid and authoritative in the Shari'a. The evidence filed in these proceedings, most notably from Dr. Carpenter, would be sufficient, I was advised, to form the basis in Islamic law to declare IH to be "legally incompetent"; all parties agree that IH is not legally competent under Islamic law. 28. Dr. Ali advises that the legally incompetent person (along with the terminally ill, the disabled and minors) is perpetually in a heightened state of spirituality, hence he or she is exempt from practising the major rituals of Islam including adherence to the Five Pillars. 29. On the specific issues engaged in this application, Dr. Ali advises as follows: Fasting in Ramadan i) Fasting during the daylight hours of Ramadan is one of the Qur'anically mandated obligations for all Muslims who are legally competent, and who are not exempt. Certain groups are exempt from fasting; they include the incapacitous, minors, the ill, pregnant women, those who are travelling. Those who are exempt are not morally culpable for not keeping the daylight fast. Trimming or shaving of pubic and axillary hair ii) Cleaning pubic or axillary hair is a religiously sanctioned practice deemed in Islam to be a normal human 'right' ('fitrah'); iii) The rationale is founded in a quest for ritual purity and cleanliness; (the aphorism 'cleanliness is next to godliness' is of course familiar to many religions); iv) The removal of pubic and axillary hair for the legally competent Muslim is 'mustahab' or 'recommended practice'; while it is not obligatory ('wajib') it would be viewed as a 'minor sin' if unattended (see [26] above); v) As IH does not have 'legal competence' it is not even recommended practice for him (see [28] above); there is no obligation on his carers to carry out the removal of IH's pubic or axillary hair, and his religious rights are not being violated by not attending to this; vi) It is highly recommended and praiseworthy for carers (of whatever religion) to shave or shorten a patient's pubic or axillary hair, in the same way as it is for them to assist the incapacitous in other routine care tasks; vii) There are differences of opinion between Islamic commentators as to the preferred manner of hair removal; any method would be deemed acceptable; viii) The time limit within which the hair needs to be cleaned or trimmed or removed is also a matter of assorted opinion, though the majority of commentators favour a 40-day limit; ix) While it would be not permissible for a competent Muslim to expose their genitals, it would not be contrary to the Shari'a for a Muslim without capacity who requires assistance with his care, for his carers to clean his genitals or shave them; that said, "carers must be sensitive that the client's dignity is not violated"; x) 'No hurt no harm' is a cardinal principle of Islamic bioethics; avoidance of harm has priority over the pursuit of a benefit of equal or lesser worth. Therefore it would be wrong to create a situation in which observance of Islamic custom would, or would be likely to, cause harm to the person (i.e. IH) or his carers; if there is a risk of harm, then this principle would absolve even the capacitated person from performing an obligatory requirement. Best interests: fasting
It was uncontentious that it was not in IH's best interests to fast:

1. As indicated above ([29](i)) there is no Islamic obligation on IH to fast given his lack of capacity. IH has never been required to fast by his family, and has not fasted while in their care. He has not, thus far, fasted while in the care of the Local Authority.

2. If this had been a case in which IH had some appreciation of the religious significance of fasting in Ramadan (as a means to attaining taqwa, i.e. the essence of piety, protecting one's self from evil) there may be said to be some benefit in him doing so. But he has no such appreciation.

3. IH, I am satisfied, would not in fact understand why food and water was being withheld for the daylight hours in the month of Ramadan; the absence of food/water would be likely to cause him stress, or distress; this may cause him to become irritable and/or aggressive in the ways described above ([13]) increasing the risks to staff and himself. There is some minor anxiety that fasting and/or mild dehydration would increase the side effects of any one of his multiple medications. It is plainly not in his interests that he should fast, and the declaration will be granted.

Best interests: trimming/removal of pubic/axillary hair
Cobb J started with some important general observations concerning religion and disability:
33. Health or social care bodies who make the arrangements for the care for adults who lack capacity owe an obligation, so far as is reasonably practicable and in the interests of the individual, to create a care environment and routine which is supportive of the religion of P, and to facilitate P's access to, or observance of religious custom and ritual. All forms of liturgy should, where practicable, be accessible to persons with disabilities. This view is consistent with Article 9 of the European Convention on Human Rights, and the right enjoyed by those who lack capacity as for those who have capacity, to freedom of religion and freedom, either alone or in community with others and in public or private, to manifest his religion or belief, in worship, teaching, practice and observance. While no specific protection in this regard appears to be offered by the UNHR Convention on the Rights of Persons with Disability,[1] the rights enshrined in the ECHR (above) "are for everyone, including the most disabled members of our community" (Baroness Hale in P (by his Litigation Friend, OS) v Cheshire West & Others [2014] UKSC 19). 34. The duty outlined above is consistent with the expectation that in best interests decision-making for someone who lacks capacity, the court will take account, so far as is reasonably ascertainable "the beliefs and values" of that person which would be likely to influence his decision if he had capacity (section 4(6)(b)); these must include, where relevant, religious beliefs and values.
As noted above, TH initially proceeded on the basis that there was a duty to remove public/axillary hair. However, Cobb J made clear that there was in fact no such duty or obligation on a person who lacks capacity ('legal competence' in Islam) to trim or shave his or her pubic and axillary hair, or on his carer to do so for them. He emphasised that IH, himself, derived no religious 'benefit' by having the procedure undertaken, as he would not understand its religious significance. He also noted that it was of no consequence to him, in the consideration of these facts, that the "carers may be blessed in the eyes of Islam in undertaking a 'praiseworthy' activity by trimming the hair; their interests are not my concern."

Into the balance, Cobb J put the following further factors:

1. That if IH had capacity he probably would have observed this custom. However, this factor carries little weight in his overall reckoning given that he found that, in progressive Islamic religious teaching, as an incapacitous person IH was exempt from observing the Islam rituals because he was already in a heightened state of spirituality;

2. That IH was not, and had never been able, to express a reliable view on the issue;

3. That it was to IH's benefit that his family felt he was being enabled to follow Muslim custom to the fullest possible extent. However, Cobb J held that this was not "a case in which I believe that IH will be viewed any less favourably or affectionately by his family or wider community if the hair trimming is not carried out; he is, within the family and community, much loved. He has not had the hair trimming carried out for three years to date, with no discernible change in family attitude to him. He is, as I have emphasised already, in a superior not an inferior state of spirituality to the rest of his family."

4. The potential risk to IH from the way in which removal would be carried out, which would require the possible intervention of up to three people, two of whom would be positioned with IH in the relatively small bathroom, where it was planned to take place following IH's bath in circumstances IH might find overcrowded, claustrophobic, and anxiety-inducing.

5. IH's dignity. Even though Cobb J noted that IH was said not to have any sense of personal modesty, in that he was not concerned about exposing his genitals in front of staff, he considered that the procedure contemplated carries with it "compromises to the preservation of dignity."

Cobb J concluded:
47. I have faithfully endeavoured to consider these issues from IH's point of view, while ultimately applying a best interests evaluation. IH has a life-long developmental condition and has never had the capacity to understand the tenets of Islam; the benefits of adherence to such rituals do not obtain for him, but for others. The fact is that by reason of his disability IH is absolved of the expectation of performing this recommended procedure, and there is no other clear benefit to him. The trimming of the pubic and axillary hair would serve no other purpose. I am anxious that IH should be spared additional stresses in his life, and wish to protect him and the staff from the risk of harm - an approach which itself has the endorsement of Islamic teaching (see [29](x) above). Comment
Cobb J was at acute pains to inform himself of the actual requirements of Islam, as opposed to the requirements that were (mis)understood by IH's social workers and, it appears, to some extent by TH himself. In so doing, and in calling upon the expertise of a cultural expert, he was in unusual, but not unprecedented territory. Similar expertise seems to have been called upon (albeit referred to in passing) in A Local Authority v ED & others [2013] EWCOP 3069, concerning an apparent "duty" to remove the pubic hair of a Muslim woman, with an exception for the incapacitous. The court also called upon a cultural expert in , in which the court heard from a cultural expert on the implications of the marriage of a Bangladeshi woman and the ways in which it might be brought to an end, albeit in that case finding that the expert provided no actual assistance.

Whilst, on its face, the decision appears to be the very model of a best interests decision constructed from the person outwards, one passing comment is of particular interest. Cobb J note that it was "progressive" Islamic belief that as an incapacitous person IH was exempt from observing the Islam rituals because he was already in a heightened state of spirituality (paragraph 38). This raises the question of whether (a) there is another school of Islamic belief and, if so, what it provides; and (b) more generally, whether - and how - the courts will be required to adjudicate between different schools of belief, whether within Islam or within other faith structures.

[1] In fact, religion is specifically mentioned in preamble (p) to the CRPD as regards the position of persons with disabilities who are also subject to discrimination on the basis of religion. Further, the CRPD is intended to ensure with persons with disabilities are entitled to enjoy "all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability" (Article 4), and the equivalent to Article 9 ECHR is to be found in Article 18 of both the UN Declaration on Human Rights and the International Covenant on Civil and Political Rights.

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Treading carefully: best interests and religious practices

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In Re IH (Observance of Muslim Practice) [2017] EWCOP 9, Cobb J had to decide two questions in relation to a 39 year old Muslim man with profound learning disabilities, namely whether it was in his best interests (1) to fast during the daylight hours of Ramadan; and (2) for his axillary (i.e.

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In Re IH (Observance of Muslim Practice) [2017] EWCOP 9, Cobb J had to decide two questions in relation to a 39 year old Muslim man with profound learning disabilities, namely whether it was in his best interests (1) to fast during the daylight hours of Ramadan; and (2) for his axillary (i.e. underarm) and pubic hair to be trimmed, in accordance with Islamic cultural and religious practice insofar as it was safe and reasonable to do so.

IH spent the first 35 years of his life in a Punjabi speaking home within a Muslim community in West Yorkshire before moving to a supported living placement arranged by his local authority and funded by the CCG. His parents were of the Sunni denomination of Islam, and were described in the court papers as 'devout'. When IH was living at home, he participated in, to the extent he was able, and was certainly exposed to the routine religious practices and observances of the family. Cobb J accepted the expert evidence of the psychiatric expert, Dr. Carpenter, "that he would have had no real appreciation of the religious significance of these rituals even if he enjoyed the regularity with which they were performed, and appreciated an increasing familiarity with them." IH had never been expected to fast during Ramadan. His father had personally shaved his pubic and axillary hair whilst he was living at home and for one year beyond (i.e. until 2014).

According to the evidence summarised by Cobb J, IH's impairments meant that he did not have any understanding of religious matters nor of the consequences of hair removal or fasting, nor was he capable of meaningful communication over abstract issues.

The local authority recognised the importance of facilitating the religious observances even of those who lack capacity. They provided, for instance, IH with a Halal diet even though IH himself would not know that the food he ate was Halal, or the significance of the source and/or preparation of the food. As an aspect of this, they decided in 2015 (apparently in agreement with TH) that staff members would carry out the "hair removal" on IH every two weeks though this in fact did not happen.

IH, through the Official Solicitor, made the application for a declaration that it was not in his best interests to fast during Ramadan. His father, TH, applied for a declaration in relation to the trimming/removal of his hair. This was initially couched on the basis that this was a religious duty, although ultimately this ended up being refined into the version set out at the outset.

Although there was no dispute as to IH's lack of capacity, Cobb J outlined the information relevant to the two decisions.

In order have capacity to make the decision to fast for Ramadan, Cobb J held a person would be expected to understand (and presumably also retain, use and weigh):

1. i) What fasting is; the lack of food and liquid, eating and drinking;

2. ii) The length of the fast;

iii) If for religion, for custom (family or otherwise), for health-associated reasons, or for other reasons;

1. iv) If for religion reasons, which religion and why;

2. v) The effect of fasting on the body;

3. vi) What the consequences would be of making a choice to fast and the risks of choosing to not fast or of postponing the decision.

Trimming/removal of pubic or axillary hair
To have the capacity to make a decision in relation to the trimming or removal of pubic or axillary hair for religious or cultural reasons, Cobb J a person would be expected to be able to understand:

1. i) Which parts of the hair are being removed - pubic, axillary, perianal, trunk, beard, leg, torso, or head;

2. ii) Whether the reason for the hair trimming/removal is religious, for the maintenance of good hygiene, custom, or some other;

iii) If for a religious reason, which religion and why;

iv) What the consequences would be of making a choice to have hair trimmed/removed, and of not trimming/removing the hair.
The requirements of Islam
Cobb J, expressly directing himself by reference to the Supreme Court's guidance as to the meaning of best interests in Aintree, heard from a lecturer in Arabic and Islamic Studies (Dr Mansur Ali, from Cardiff University) so as to be able to gain a true picture of the importance of the place of fasting and the trimming/removal of pubic/axillary hair for IH.

Cobb J outlined in some detail what he had been advised by Dr Ali:
Islamic religious observance for those without capacity. 26. The Five Pillars of Islam ('shahada' [faith], 'salat' [prayer], 'zakat' [charity], 'sawm' [fasting] and 'hajj' [pilgrimage]) are the foundation and framework of Muslim life, and are regarded as obligatory for Muslims. Not all actions or observances within Islam, however, are obligatory; some are recommended, others optional, some actions are reprehensible, and others prohibited. In Islam, a Muslim will commit a sin if he/she violates something which is obligatory or prohibited, will be rewarded for carrying out something which is recommended; a minor sin is committed for not doing something which is recommended, and for doing something which is reprehensible. 27. .Significantly for present purposes, Islam stipulates different arrangements for those who lack 'legal competence'. 'Legal competence' in Islamic terms is defined by Dr. Ali as "a capacity or a potential for mental functioning, required in a decision-specific manner, to understand and carry out decision-making. Competence is always presumed; its absence or inactivity has to be affirmed by a court." It is normal (per Dr. Ali) to defer to medical practitioners or experts on the issue of legal (mental) competence; their opinion would be likely to be deemed valid and authoritative in the Shari'a. The evidence filed in these proceedings, most notably from Dr. Carpenter, would be sufficient, I was advised, to form the basis in Islamic law to declare IH to be "legally incompetent"; all parties agree that IH is not legally competent under Islamic law. 28. Dr. Ali advises that the legally incompetent person (along with the terminally ill, the disabled and minors) is perpetually in a heightened state of spirituality, hence he or she is exempt from practising the major rituals of Islam including adherence to the Five Pillars. 29. On the specific issues engaged in this application, Dr. Ali advises as follows: Fasting in Ramadan i) Fasting during the daylight hours of Ramadan is one of the Qur'anically mandated obligations for all Muslims who are legally competent, and who are not exempt. Certain groups are exempt from fasting; they include the incapacitous, minors, the ill, pregnant women, those who are travelling. Those who are exempt are not morally culpable for not keeping the daylight fast. Trimming or shaving of pubic and axillary hair ii) Cleaning pubic or axillary hair is a religiously sanctioned practice deemed in Islam to be a normal human 'right' ('fitrah'); iii) The rationale is founded in a quest for ritual purity and cleanliness; (the aphorism 'cleanliness is next to godliness' is of course familiar to many religions); iv) The removal of pubic and axillary hair for the legally competent Muslim is 'mustahab' or 'recommended practice'; while it is not obligatory ('wajib') it would be viewed as a 'minor sin' if unattended (see [26] above); v) As IH does not have 'legal competence' it is not even recommended practice for him (see [28] above); there is no obligation on his carers to carry out the removal of IH's pubic or axillary hair, and his religious rights are not being violated by not attending to this; vi) It is highly recommended and praiseworthy for carers (of whatever religion) to shave or shorten a patient's pubic or axillary hair, in the same way as it is for them to assist the incapacitous in other routine care tasks; vii) There are differences of opinion between Islamic commentators as to the preferred manner of hair removal; any method would be deemed acceptable; viii) The time limit within which the hair needs to be cleaned or trimmed or removed is also a matter of assorted opinion, though the majority of commentators favour a 40-day limit; ix) While it would be not permissible for a competent Muslim to expose their genitals, it would not be contrary to the Shari'a for a Muslim without capacity who requires assistance with his care, for his carers to clean his genitals or shave them; that said, "carers must be sensitive that the client's dignity is not violated"; x) 'No hurt no harm' is a cardinal principle of Islamic bioethics; avoidance of harm has priority over the pursuit of a benefit of equal or lesser worth. Therefore it would be wrong to create a situation in which observance of Islamic custom would, or would be likely to, cause harm to the person (i.e. IH) or his carers; if there is a risk of harm, then this principle would absolve even the capacitated person from performing an obligatory requirement. Best interests: fasting
It was uncontentious that it was not in IH's best interests to fast:

1. As indicated above ([29](i)) there is no Islamic obligation on IH to fast given his lack of capacity. IH has never been required to fast by his family, and has not fasted while in their care. He has not, thus far, fasted while in the care of the Local Authority.

2. If this had been a case in which IH had some appreciation of the religious significance of fasting in Ramadan (as a means to attaining taqwa, i.e. the essence of piety, protecting one's self from evil) there may be said to be some benefit in him doing so. But he has no such appreciation.

3. IH, I am satisfied, would not in fact understand why food and water was being withheld for the daylight hours in the month of Ramadan; the absence of food/water would be likely to cause him stress, or distress; this may cause him to become irritable and/or aggressive in the ways described above ([13]) increasing the risks to staff and himself. There is some minor anxiety that fasting and/or mild dehydration would increase the side effects of any one of his multiple medications. It is plainly not in his interests that he should fast, and the declaration will be granted.

Best interests: trimming/removal of pubic/axillary hair
Cobb J started with some important general observations concerning religion and disability:
33. Health or social care bodies who make the arrangements for the care for adults who lack capacity owe an obligation, so far as is reasonably practicable and in the interests of the individual, to create a care environment and routine which is supportive of the religion of P, and to facilitate P's access to, or observance of religious custom and ritual. All forms of liturgy should, where practicable, be accessible to persons with disabilities. This view is consistent with Article 9 of the European Convention on Human Rights, and the right enjoyed by those who lack capacity as for those who have capacity, to freedom of religion and freedom, either alone or in community with others and in public or private, to manifest his religion or belief, in worship, teaching, practice and observance. While no specific protection in this regard appears to be offered by the UNHR Convention on the Rights of Persons with Disability,[1] the rights enshrined in the ECHR (above) "are for everyone, including the most disabled members of our community" (Baroness Hale in P (by his Litigation Friend, OS) v Cheshire West & Others [2014] UKSC 19). 34. The duty outlined above is consistent with the expectation that in best interests decision-making for someone who lacks capacity, the court will take account, so far as is reasonably ascertainable "the beliefs and values" of that person which would be likely to influence his decision if he had capacity (section 4(6)(b)); these must include, where relevant, religious beliefs and values.
As noted above, TH initially proceeded on the basis that there was a duty to remove public/axillary hair. However, Cobb J made clear that there was in fact no such duty or obligation on a person who lacks capacity ('legal competence' in Islam) to trim or shave his or her pubic and axillary hair, or on his carer to do so for them. He emphasised that IH, himself, derived no religious 'benefit' by having the procedure undertaken, as he would not understand its religious significance. He also noted that it was of no consequence to him, in the consideration of these facts, that the "carers may be blessed in the eyes of Islam in undertaking a 'praiseworthy' activity by trimming the hair; their interests are not my concern."

Into the balance, Cobb J put the following further factors:

1. That if IH had capacity he probably would have observed this custom. However, this factor carries little weight in his overall reckoning given that he found that, in progressive Islamic religious teaching, as an incapacitous person IH was exempt from observing the Islam rituals because he was already in a heightened state of spirituality;

2. That IH was not, and had never been able, to express a reliable view on the issue;

3. That it was to IH's benefit that his family felt he was being enabled to follow Muslim custom to the fullest possible extent. However, Cobb J held that this was not "a case in which I believe that IH will be viewed any less favourably or affectionately by his family or wider community if the hair trimming is not carried out; he is, within the family and community, much loved. He has not had the hair trimming carried out for three years to date, with no discernible change in family attitude to him. He is, as I have emphasised already, in a superior not an inferior state of spirituality to the rest of his family."

4. The potential risk to IH from the way in which removal would be carried out, which would require the possible intervention of up to three people, two of whom would be positioned with IH in the relatively small bathroom, where it was planned to take place following IH's bath in circumstances IH might find overcrowded, claustrophobic, and anxiety-inducing.

5. IH's dignity. Even though Cobb J noted that IH was said not to have any sense of personal modesty, in that he was not concerned about exposing his genitals in front of staff, he considered that the procedure contemplated carries with it "compromises to the preservation of dignity."

Cobb J concluded:
47. I have faithfully endeavoured to consider these issues from IH's point of view, while ultimately applying a best interests evaluation. IH has a life-long developmental condition and has never had the capacity to understand the tenets of Islam; the benefits of adherence to such rituals do not obtain for him, but for others. The fact is that by reason of his disability IH is absolved of the expectation of performing this recommended procedure, and there is no other clear benefit to him. The trimming of the pubic and axillary hair would serve no other purpose. I am anxious that IH should be spared additional stresses in his life, and wish to protect him and the staff from the risk of harm - an approach which itself has the endorsement of Islamic teaching (see [29](x) above). Comment
Cobb J was at acute pains to inform himself of the actual requirements of Islam, as opposed to the requirements that were (mis)understood by IH's social workers and, it appears, to some extent by TH himself. In so doing, and in calling upon the expertise of a cultural expert, he was in unusual, but not unprecedented territory. Similar expertise seems to have been called upon (albeit referred to in passing) in A Local Authority v ED & others [2013] EWCOP 3069, concerning an apparent "duty" to remove the pubic hair of a Muslim woman, with an exception for the incapacitous. The court also called upon a cultural expert in , in which the court heard from a cultural expert on the implications of the marriage of a Bangladeshi woman and the ways in which it might be brought to an end, albeit in that case finding that the expert provided no actual assistance.

Whilst, on its face, the decision appears to be the very model of a best interests decision constructed from the person outwards, one passing comment is of particular interest. Cobb J note that it was "progressive" Islamic belief that as an incapacitous person IH was exempt from observing the Islam rituals because he was already in a heightened state of spirituality (paragraph 38). This raises the question of whether (a) there is another school of Islamic belief and, if so, what it provides; and (b) more generally, whether - and how - the courts will be required to adjudicate between different schools of belief, whether within Islam or within other faith structures.

[1] In fact, religion is specifically mentioned in preamble (p) to the CRPD as regards the position of persons with disabilities who are also subject to discrimination on the basis of religion. Further, the CRPD is intended to ensure with persons with disabilities are entitled to enjoy "all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability" (Article 4), and the equivalent to Article 9 ECHR is to be found in Article 18 of both the UN Declaration on Human Rights and the International Covenant on Civil and Political Rights.

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Treading carefully: best interests and religious practices

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In Re IH (Observance of Muslim Practice) [2017] EWCOP 9, Cobb J had to decide two questions in relation to a 39 year old Muslim man with profound learning disabilities, namely whether it was in his best interests (1) to fast during the daylight hours of Ramadan; and (2) for his axillary (i.e.

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The 5 neurodivergent love languages: infodumping, parallel play, support swapping, Please Crush My Soul Back Into My Body, Penguin Pebbling

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Neurodiversity in Business (NiB) - the Neurodiversity Charity

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Neurodiversity, sexuality and gender identity

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Author: Sofie Day As part of our #NDVoices article series, during LGBTQ+ History Month Neurodiversity in Business volunteer Sofie Day examines link between neurodivergence and LGBTQIA status – both personally and in available studies. Sofie also share links to helpful resources that LGBTQ+ community

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Neurodiversity in Business (NiB) - the Neurodiversity Charity

# data[].attributes.attachment_link.title
Neurodiversity, sexuality and gender identity

# data[].attributes.attachment_link.description
Author: Sofie Day As part of our #NDVoices article series, during LGBTQ+ History Month Neurodiversity in Business volunteer Sofie Day examines link between neurodivergence and LGBTQIA status – both personally and in available studies. Sofie also share links to helpful resources that LGBTQ+ community

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Everyone has the right to have personal relationships, including the full breadth of people who draw on care and support services, regardless of the type of support they access.

The adult social care workforce needs to have the right values, skills and knowledge to support people they care for to have positive personal relationships. We've produced a range of resources to help employers think about what workers need to know so they can create a development programme for their organisation.

In 2021, Skills for Care produced guidance in partnership with the Care Quality Commission on supporting people to have personal relationships.

Skills for Care also commissioned Supported Loving to undertake a review of the learning materials available to best support people across all social care groups surrounding sexuality and intimate relationships.

Watch our information video to find out more about this guide.

Training materials

Skills for Care and Supported Loving have developed a package of training materials to help social care employers develop the skills and knowledge needed to support people who draw on services with personal relationships.

The training resources have been developed for social care training providers and in-house training departments of social care employers to use to embed learning around supporting the personal and sexual relationships of people drawing on care and support.

The 'Supporting personal relationships' guide and trainer materials are supported by the Care Quality Commission and compliment their guidance around inspection in the area of relationships and sexuality in adult social care services.

The trainer materials include PowerPoint slides which are supported by a lesson plan, training facilitator guide and learner handouts and worksheets.

The programme includes a brief introduction, followed by four modules that can be delivered individually or as a complete package. The training areas are:

1. Understanding sexuality and relationships: barriers, benefits and the impact of staff values

2. Roles, regulations and the law

3. Sexual safety and autonomy

4. Practical approaches to relationships and sexuality support

Both the guide and training materials are focused on enabling social care providers to offer support in a way that respects peoples' choices and values whilst keeping them safe.
Handouts and worksheets
If you would like to explore the availability of Train the Trainer support to enable delivery of this learning programme, please contact Claire.Bates@choicesupport.org.uk.

Podcast - Sexual safety through empowerment publication

Skills for Care has taken part in a podcast covering sexual safety through empowerment publication with CQC.
Listen to the podcast

An open culture is crucial for allowing people to express sexuality and promote healthy sexual relationships in care, as well as helping to spot where there may be risks of abuse. One of the key things CQC found in our sexual safety guidance which we published earlier this year was that people must be empowered to speak about relationships and sexuality, in order for them to articulate their needs and feel valued. While we are aware that sexual incidents in services are not common, we know from speaking to those affected that the impact and consequences can be life-changing. It is not good enough to put this issue in a 'too difficult to discuss' box. It is particularly because these topics are sensitive and complex that they should not be ignored.

Kate Terroni

Chief Inspector of Adult Social Care - Care Quality Commission (CQC)

Personal relationships are part of many peoples' lives and everyone should have the opportunity to develop these relationships if they choose to. Providing support to people around personal relationships is a key part of a person-centred approach; it's about people making their own choices about what they want from life, and offering support which allows them to live out these choices safely.

Malcolm Mitchell

The Avenues Group

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supporting personal and sexual relationships

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Everyone has the right to have personal relationships, including the full breadth of people who draw on care and support services, regardless of the type of support they access. The adult social care workforce needs to have the right values, skills and knowledge to support people they care for to have positive personal relationships.

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An introduction to the Double Empathy problem

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Transcript for 1800 Seconds on Autism Episode on Monotropism

Jamie Knight Thanks for downloading this episode of 800 seconds on autism. I'm Jamie Knight.

Robin Steward And I'm Robin Steward. Welcome back to the podcast. And don't forget, you can find all our episodes on BBC sounds or wherever you get your podcasts. So let's get straight down to business. We know autistic people are great at focusing on small details. Some people call it obsessional. But we autistic people know the joy of it.

Jamie Knight Today, we'll be chatting to Wenn Lawson, an autistic doctor, about how our minds focus differently to neurotypical ones, or, as it is known, wait for it... monotropism!

Robin Steward And we'll be hearing some of your obsessions. By which I mean intense interests, too. I can't wait.

Jamie Knight I've been very excited to talk to Dr. Lawson because I'm a huge fan of their work. He's an autistic psychologist, lecturer and author and one of the people to develop the theory about autistic focus known as monotropism. Currently, he is a tutor practitioner with Birmingham University online Master's in autism, but he lives in Australia. Howard, could you explain what monetary prism is and autism?

Wenn Lawson It's a little bit harder to to multi task and do lots of things at once, which means walk around and have a cup of tea, chatting, processing information, thinking about what you might do later. Lots of things going on at once. We find that quite hard. So so we're better at doing one thing at a time. And we're also better at honing in on an interest that we've captured or our attention has captured. And staying with that interest quite passionately rather than having lots of interest. Having said that, if you are ADHD and autistic, you might find yourself with your fingers in lots of pies, which is a metaphor. That means doing lots of things. But generally serial fashion, one after the other, and then perhaps going back and finishing off first thing you started. So monotropism means being very single minded and focusing quite deeply and quite passionately on one thing at a time rather than on several things at once.

Jamie Knight I think that's I think that's a really good answer for what is Monotropism.

Robin Steward Wenn... how might monotropism look for an autistic person going about their day to day life?

Wenn Lawson So it might be through the windows of our personality. So it might be that we're just, oh, absolutely love cats or dogs or horses or reading or Lego or dinosaurs or whatever. And that takes over all of our attention. So there's nice spare attention for other things, noticing that we might need to eat, sleep, go to the bathroom, all sorts of things. Even knowing when we feel unwell, we might not recognise the signals that our body is getting us so easily. We recognise them eventually, but we might not recognise them easily or interpret them if all of our attention is focussed elsewhere. It makes it hard to shift attention fast to move from one thing to another so somebody might come in and say Dinner's ready and you know, I'm in the middle of doing something on my computer and I've got to stop. I need a few moments or a bit longer than a few moments to switch from one thing to the next. I don't easily shift attention, so in daily life, that has quite an impact.

Jamie Knight So Wenn you've completely changed my life in the last two years in the most positive way imaginable.

Wenn Lawson Oh, that's good.

Jamie Knight You and I and your... and your work. So everything you're talking about now, I'm. I'm recognising big time. So basically I found myself lying on my back 23 hours a day in bed. And I thought that if someone had asked me beforehand, "hey, Jamie, you're going to have to lie on your back for 23 hours a day". How's that going to go for you? I would have said I would be terrible. I'd get bored and terrible and it'd be awful. Instead, I started to thrive in a way that I've not thrived before. And essentially what had happened is I'd gone from a life where I'd have five or six concurrent tasks to a life with just one one task at a time. I'd got an ability to get really monotropic, and I'm suddenly more productive and effective than ever. My focus was all about getting back on a bike so I spoke to basically every adaptive cycling place in the country and I got really, really passionate about this focus of getting back on my bike. So yay, for intense interests. But funnily enough, for me, the the way that Monotropism has affected my life the most is, is in how I think about myself and how I think about my time and how I use it. And I've started doing this thing that we call tunnels, not tasks. So the basic idea is that most folks focus around like tasks and time. So do this at said time or this by certain time. My way of kind of working through things is all around flowing, getting into what we call these like, long, flowy attention tunnels. And that's kind of how I've been reorganising my life around. So for example, when I get started at the start of the day, I don't have a to do list anymore. I've actually kind of rejected the idea of being organised in a traditional sense because it didn't do anything for me, it just made me really stressed. So instead I kind of get up and I focus my day on how to get in and out of tunnels. So I get into my first tunnel of the day, maybe at my desk and I get some stuff done there. And as soon as I got the momentum in the flow and I've got all the speed, my brain will work out what thing I need to do. I don't actually need to wake up with a specific list of things. And OMG I've got I've got lots and lots and lots of notes here, but it's been one of the highlights of the last few years. And one of the best things to come out of my injury. So thank you.

Wenn Lawson I know it's exciting. And your definition or the way you're expressing that because we certainly use that term as well about being tunnelled and you'rebsolutely right about lists. Well, at least for me, it just increases my stress. I say, oh dear, this is overwhelming. Whereas if I get into what I'm focusing on, that can easily shift me forward to the next thing. It's like that train keeps us on track and it takes us eventually onto that journey wherever we're going. And I get quite excited about it, actually. Absolutely.

Jamie Knight It's just been such a useful lens. I've got so many other examples as well. Once I started viewing my life through this lens, I've been able to do that engineering thing of, you know, recognising a barrier, working at the assumption that led to that barrier and then and then iterating on the assumption and the barrier to to try and make it go away. So when I cannot express how much of a difference this has made.

Wenn Lawson It's also important to recognise that you've been able to craft and shape this understanding to work for you and that somebody else, you know, might need to do it in a different way. But it doesn't matter. It's the same understanding and how we apply it to our lives is absolutely dependent on who we ask people, what we're doing, what we're into and so on. It's very exciting.

Jamie Knight One of the best parts of autistic life and monotropism is our intense interests. Throughout this series, we've been asking you about yours, and you've been sending us audio, which is brilliant. So here's one of the audio bites that we had from a listener called Lauren.

Lauren My intense interests tend to change every few years. As a child, it was WWE Wrestling and Liverpool Football Club at different times. In my teens, it was different stand up comedians. But now they tend to centre around a band or solo artist. Unfortunately, you can't really pick what your intense interest is going to be about. So sadly, all of the intense interest I've had around bands and solo artists haven't been musicians that you would probably consider cool. So since the start of lockdown, all I really read about, spoke about and listened to for a very long time has been the Bee Gees. For those of you who don't know, Bee Gees were a band from the sixties, peaked in the seventies with disco music and yeah, they're considered to be maybe a bit cheesy by some people. And the Bee Gees have such a long and varied career. A fascinating to read about. I know so much about them. It's actually a bit embarrassing and people genuinely think I'm being ironic when I say that I am like the Bee Gees and boom fan. No, I mean, I'm genuine about this. It's really funny.

Robin Steward Thank you so much. That was really interesting. I also think that, you know, music is music and it shouldn't be. Oh, that's cool. Or that's not cool because it's whatever speaks to you.

Jamie Knight Yeah, lots and lots. Bee Gees, Bee Gees are cool. And yeah, what we've been said about music is music. It's whatever speaks to you, whatever feels great. Thank you for sending that in. You know, it was great to hear how intense interest played a role in your life.

Robin Steward I think producer Drew has a question.

Drew I wanted to see Robin because I'm sat here and while reading up on this, I came in totally blind. I sort of could see a lot of the ways that. It might apply to me, especially as someone who is autistic and ADHD. But I wondered, Robin, if you're relating to a lot of what Jamie says and if this applies to you as well. Obviously, if you've met one autistic person, you've met one of us.

Robin Steward Well, you might be interested to know that I have an ADHD diagnosis now.

Jamie Knight Oh, congratulations.

Robin Steward Thanks. I've joined the club. I just wanted to add about obviously, everybody is different. We all know that. But the way that I get around the like, the thing that I need to do is too short for me to go off and do something else, because I often do go and do something else and get lost in it. Like making toast or something, because sometimes that might happen, you know, in another situation, like having to wait for the doctor or having to wait in the queue. And the way I get round those things is by listening to music or a podcast. I also find sometimes that you get books that have like challenges, like drawing challenges, you know, like draw something on this elephant's back. Not that I'm suggesting that you should put things on elephants back, but obviously it's just a drawn elephant. It's not real.

Jamie Knight I'd like to note if you're at the zoo, please do not spray paint the elephants. You don't want any spray painted pachyderms.

Robin Steward Yeah. Or something that I can do that I don't really have to pay attention to. You know, if I know I'm waiting for toast and I've got the news on just to keep me occupied. Now, I'm probably not that interested in the news. I mean, the news is interesting, but I mean, yeah, I mean, the news is like a rolling thing.

Jamie Knight So I do something similar. I think the timescales for us might be different, and that's part of how we're different with how, you know, monotropism and how it expresses for us is that I need minutes and minutes and minutes to transition between things. It's, it's I can't listen to the news for 30, 40 seconds. One thing that I, I have found is that there are certain video games or certain types of game which work very well for me as as infinite time fillers. So I have a thing called a Nintendo Switch console, and there's a game called Snow Runner, which I describe as Muddy Postman Pat. So you're just run around delivering things on a big muddy map. It's great. That's something that I can turn on and play at any point. So when we're off to the doctors or we're waiting for something to happen before we can do the next stage of something, I'll quite often play Snow Runner because it can fill 10 minutes or, you know, 3 hours. So, yeah, I like your strategy. Every time we chat Robin, I love that. I love the back and forth that we'll chat about a problem or a situation and you've always got a pocket full of strategies. It's great. It's wonderful.

Robin Steward Thanks. Yeah. I have a similar thing with Snowrunner. I have a, I think it's called Desert Run on my phone, it's a game. It sounds similar although you don't deliver things you just kind of run around but I find that yeah, that is very helpful. And I know that sometimes parents really worry about screen time, but I think in those circumstances it can be quite helpful because it gives you something to focus on. Like if I'm not doing anything, I'll get bored very quickly. And I do. I mean, if I was really paying attention to the news, I would find it hard to then move my attention. I have to be careful not to get too engrossed, but I remember that being a thing that my parents helped me to learn how to do. I also wanted to add that lots of kids, but I think this could apply to adults as well. But lots of kids find unstructured social time when there's not a specific like, Oh, we're going to build a fool or we're going to do this, or we're going to do that. Very challenging and it costs a lot of energy.

Jamie Knight So that's that's what I was going to say about energy in that being engrossed in things that to me that's what I'd call being in a tunnel.

Robin Steward Yeah, obviously everybody is different, but thinking about monotropinism, mono... monotropism. Yeah, that, yeah. I think thinking about monotropism, how might teachers or employers use it to be able to help autistic people?

Wenn Lawson Yeah, so, so important. Thanks, Robin. And this is why it's so important to know the student or your employee employee to understand how they tick. And this is why we need to listen to one another, because it's not one size fits all, as is Jamie and Robin, as you've both pointed out. So when you get to know the person that you're thinking of and you have in mind as to what we need to do for this person and how... we need to check, ask us what works for us if we can't explain it. And maybe we need a way to process that a little bit longer, work it out. Whether it's visually, whether it's actually hands on doing it, whether it's speaking, you know, because we're all so different. This thing about autistic people are visual learners. It;s rubbish, really. I mean, some are, a lot of us certainly aren't. And we need to know. We need to know one another. So for example, because I'm not a visual learner, I think in pictures, but not visually. So I have a different whole set of different systems, sensory systems contributing to better picture for me. Then if you gave me a map and said, t"his is the way to get around the school" or the warehouse or whatever it is, I wouldn't be been any good for me. I can't read maps, can't follow maps. But if you say, let's go around this together and we walk that distance and this is that place and this is yeah, this. And I might take pictures of it as we go or record it. I can look at later. That'll work really well for me. So it really is important to know the people that we're working with, supporting and doing these things for or with. Because as you said, Jamie and Robin, that we're all so different.

Robin Steward Do you have any strategies or ideas of how a teacher or support member of staff might be able to not break someone's tunnel but be able to help them to transition to another task or give them information they might need?

Wenn Lawson Yes. I actually think some of the traditional things that they use in the school classroom can be really quite useful. Things like and for some people, wouldn't work for me, but for some people like timers, countdowns, moving a slider from one colour to the next. That's when you move, this sort of thing can be really useful. Not giving warning, not letting somebody have time to transition is awful. And the other thing is that some autistic people need things written down beforehand, stuck on a desk in front of them or up on a whiteboard or somewhere where they can read or see or have access to what that means in whatever shape or form they need it to be. But I don't work like that. I can't, I don't cope with that. if somebody gives me stuff written beforehand, I get so wound up in trying to process and work out what they mean, by the time have come to actually, "I've got to do that". I've lost it. So. So it really is knowing the person what works for them. And if somebody isn't doing well with pen and paper, maybe they need a keyboard.

Robin Steward So it's time to hear from another listener. Let's hear from Carla about how the things she intensely focuses on help her feel in control.

Carla My special interests are art, plants, ancestors, mystics and mysticism, and bushcraft. Growing up in an environment filled with chaos and abuse. I found solace by creating my own places of order and beauty through imagining myself inside works of art as well as making my own. I began asking questions about meaning and creation quite young in an effort to make sense of life's hardships. This put me on a lifelong path of fascination with mystics and misfits and their various ways of making meaning of what can feel meaningless. My favourite thing about my special interests is how they have given me a sense of safety and control when my life can feel sometimes unsafe and out of my control. They've also allowed me to share insights and practices with others that I hope may have some tiny positive impact in the lives of individuals I encounter in my life and in my work.

Robin Steward Well, that was very interesting. Thank you so much for writing in, Carla. Oh, well, speaking in.

Jamie Knight Yeah, I love the phrase speaking in. And that was. That was really interesting. Yeah, I'm nodding along. And my intense interests have a similar way. There are things I can be lost into in a way that I can bring back, you know, a sense of control over my environment. And, you know, one of the things I've learned from the last couple of years, my injury. Well, if it's an injury or not, that's a different question. But it is my body changing on me is the thing that I grieved was my loss of control, not the not what happened to my body. And, you know, last summer, I did a whole bunch of new things in regards to being far more home alone, because I was really struggling with a sense of control over my life and over my home. So my mom, my flatmate, bless him, was was it was really tricky for both of us. And during that time, I completely got absorbed into my interests beyond more than I normally do, because it gave me that sense of control.

Robin Steward So when how do intense interests fit into the way of thinking about Monotropism?

Wenn Lawson Again, it's about attention. So everything that you guys have talked about is so relevant, and it's all about the same kind of thing, whether you're in a tunnel and that's a passion or whether it's a tunnel of things, that is the way you're going about your day. It's the aspect of your attention is being occupied by something that you are able to work with. And I'm a bit like Jamie I didn't talk til I was near five and I have lots of issues with language and just listening to everybody's conversation and the words that are being said. I can get so caught up with that that I'm not quite sure how to answer a question, for example. And it's not because I don't want to answer it. It's that those other words are still swimming around in my head and I'm still processing them. I need a bit longer to get there. So if this is a passionate interest, so for example, I'm absolutely passionate about birds, any kind of bird, really, a feather kind, preferably. Yeah. If I'm in the middle of a presentation, doing a talk, doing a piece of writing or whatever, and a bird flies over or around across the window in front of me, that will capture my attention. It doesn't matter what I'm doing, I will always notice the bird. I will recognise its song, the shape of the bird, how it's flying, what kind of bird it is, etc. It will take over everything. And that's just that's just that passionate thing that captures attention even above where else we might be focussed. And yeah, it can be really useful when it becomes, when it comes into... Like I got a friend here in Warrnambool where I live in Australia who is really great at car detailing. So if you give your car to this person it'll be absolutely spotless and perfect and brilliant because that is his passion. It wouldn't be mine, but that's where he operates. So that's what captures his attention. That's what becomes his job. That's what he's really good at. And I'm not I don't want a job as a bird watcher, as as a paid interest. But certainly in research, I'm finding a whole heap of things that my passion for research and autism is certainly captured by. And I'm also synaesthetic. So that means I, some of it's hard to explain. But for me it means that my feelings states are actually colours, so feeling happy is like a yellow snow storm. It's not necessarily in a feeling that most people might have. A feeling states for me are colours and certainly in my head thinking in rhyme all the time, especially when I'm anxious. Those two things get me into that flow state where I'm, when I'm involved with research and can actually aid the work that I'm doing. It's hard to explain it, but this is the sort of tunnel that I get into. Sorry, different to Jamie but it's the same thing. Same principle.

Robin Steward How did you and Dinah Murray start thinking about monotropism?

Wenn Lawson From from Dinah's point of view. She was doing a thesis for her Ph.D. and she was talking about language. It was a linguistics Ph.D., and she noted about how language breaks into the interests. When people talk, they capture another person's attention by talking, and that breaks into an interest. And she noticed when she came across working with autistic people, she was a carer. She noticed that it was very different for autistic people and she realised, oh, there's that one interest for this group of people, which is completely all consuming. And for this other group they flipped between interests. That's putting it very simply and that's probably not the whole story. But whilst Dinah was coming across those sorts of things in the UK, I was actually noticing exactly the same thing in Australia and I started to talk to other people about what I was noticing and what I was experiencing as an autistic person. And I couldn't find, I couldn't find a receptor, I couldn't find anybody to really understand what I was talking about. So I just worked it all out, put it into a book and into papers and shared with a lot of people. And over time, this whole idea of tunnels have of being on a railway track and not a road not able to switch easily from track to track. That's that's really taken off. And, and currently I'm certainly involved with about three projects we're exploring to scientifically substantiate that monotropism is happening in autism. Some people talk about neurodiversity, we're all neurodiverse every human on the planet is neurodiverse some of us are neurodivergent as in media, we sort of diverge from the typical, if you like. And I'm thankful because I think that we're the creative lot, we're the people who come up with ideas and can run with them because of that flow state thing.

Jamie Knight We lost Dinah last year. She died and funnily enough, her funeral was one of the things that really made me go and look at her work again and shaped so many of my current thoughts. You and Dinah have changed my life in more ways than I can express.

Robin Steward I just want to say thanks so much when you've been on our podcast and thank you for all the work that you've been doing. And just as Jamie was saying, you know, big love to Dinah because, you know, she really was a pioneer in helping people to understand how autistic people think. So thank you to both of you and thank you again for being on the podcast.

Wenn Lawson Absolutely. Thanks for the opportunity. And it's a work that continues on and there will be other people like you guys coming up in the ranks that will take it even further as we all get older and our lives come to a close. So it's exciting knowing that it's actually going to continue. Dinah would be rapt. I rapt as an Australian expression. It just means she'd be feeling really good.

Jamie Knight Wenn, as I said before, your work has changed my life in more ways than I can express on this. It's been an absolute pleasure to chat to you, especially as it's so late at night where you are. So is there any way that people could find you online to learn more about your work?

Wenn Lawson Absolutely. There's the web page www.wennlawson.com. I have a YouTube channel so you type Wenn Lawson into YouTube you'll find me lots of little illustrations I've created and animations to explain various things. In my experience, those are probably the two better places. Yeah.

Jamie Knight Fantastic. You also have lots of books as well.

Wenn Lawson Yeah, there's few of those out there just writing, running a new one at the moment, but I won't get onto that because that would be another tunnel.

Robin Steward Some of your books published under the name Wendy Lawson. And so if people are looking for them and if you type in Wenn, which is W.E.N.N, you don't get up all your books, I just for people to find out, I hope that's an okay thing to say Wenn.

Wenn Lawson Yeah, absolutely Robyn, Wendy is very much part of Wenn that was all part of my journey. I was Wendy before I, before I recognised Wenn so that's all part of who I am and I appreciate you saying that because that makes resources a lot more available to people. Thank you. Thank you, everybody. Lovely to chat with you all.

Robin Steward That's it for this episode of 800 and seconds on autism. Thank you for letting us into your earphones.

Jamie Knight And also thank you for all of the listeners who email us at stim@bbc.co.uk. We've only been able to include a few of you on each of these episodes, but we really do read every one. And don't forget, you can find all of our other episodes on BBC sounds for wherever you get your podcasts from.

Robin Steward So for me, Robyn Steward.

Jamie Knight And me Jamie Knight.

Jamie and Robin BYE!

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BBC Sounds - 1800 Seconds on Autism, 'Monotropism has changed my life'

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Transcript for 1800 Seconds on Autism Episode on Monotropism Jamie Knight Thanks for downloading this episode of 800 seconds on autism. I'm Jamie Knight. Robin Steward And I'm Robin Steward. Welcome back to the podcast. And don't forget, you can find all our episodes on BBC sounds or wherever you get your podcasts.

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NEUROQUEER • THE WRITINGS OF DR. NICK WALKER

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Order from Your Local Bookshop, Autonomous Press, or Amazon Audiobook now available from Libro.fm, Audiobooks.com, and Audible Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities Neuroqueer Heresies collects my shorter writings on neurodiversity, autism, and Neuroqueer Theory, including 120 pages of brand-new material that’s never before been available online or in

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Neuroqueer some basic terms and definitions

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Neuroqueer some basic terms and definitions

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NEUROQUEER * THE WRITINGS OF DR. NICK WALKER

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Nick Walker, PhD
I wrote "Neurodiversity: Some Basic Terms & Definitions" back in 2014. So far, of all the pieces I've written, this is the one that's been most frequently cited in other people's work (academic and otherwise). The definitive, citable version of this essay, along with supplementary comments, can be found in my book When referencing my work, please remember that my pronouns are she/her. Neuroqueer Heresies
New paradigms often require a bit of new language, and this is certainly the case with the neurodiversity paradigm. I see many people - scholars, journalists, bloggers, internet commenters, and even people who identify as neurodiversity activists - get confused about the terminology around neurodiversity. Their misunderstanding and incorrect usage of certain terms often results in poor and clumsy communication of their message, and propagation of further confusion (including other confused people imitating their errors). At the very least, incorrect use of terminology can make a writer or speaker appear ignorant, or an unreliable source of information, in the eyes of those who do understand the meanings of the terms.

For those of us who seek to propagate and build upon the neurodiversity paradigm - especially those of us who are producing writing on neurodiversity - it's vital that we maintain some basic clarity and consistency of language, for the sake of effective communication among ourselves and with our broader audiences. Clarity of language supports clarity of understanding.

And, as I increasingly find myself in the position of reviewing other people's writing on neurodiversity - grading student papers, reviewing book submissions or submissions to journals, consulting on various projects, or even just deciding which pieces of writing I'm willing to recommend to people - I'm getting tired of running into the same basic errors over and over.

So, as a public service, I'm posting this list of a few key neurodiversity-related terms, their meanings and proper usage, and the ways in which I most commonly see them mis used.

NEURODIVERSITY

What It Means:

Neurodiversity is the diversity of human minds, the infinite variation in neurocognitive functioning within our species.

What It Doesn't Mean:

Neurodiversity is a biological fact. It's not a perspective, an approach, a belief, a political position, or a paradigm. That's the neurodiversity paradigm (see below), not neurodiversity itself.

Neurodiversity is not a political or social activist movement. That's the Neurodiversity Movement (see below), not neurodiversity itself.

Neurodiversity is not a trait that any individual possesses or can possess. When an individual or group of individuals diverges from the dominant societal standards of "normal" neurocognitive functioning, they don't "have neurodiversity," they're neurodivergent (see below).
"Our school offers multiple learning strategies to accommodate the neurodiversity of our student body."
Example of Correct Usage:

Examples of Incorrect Usage:

"Neurodiversity claims that..."
This writer is actually trying to talk about either the neurodiversity paradigm or the Neurodiversity Movement. Neurodiversity, as a biological characteristic of the species, can't "claim" anything, any more than variations in human skin pigmentation can "claim" something.

"Neurodiversity is a load of nonsense."
Really? So human brains and minds don't differ from one another? There's an awful lot of scientific evidence that shows quite plainly that there's considerable variation among human brains. And if we all thought alike, the world would be a very different place indeed. The person who wrote this sentence was probably trying to object to the neurodiversity paradigm and/or the positions of the Neurodiversity Movement, and has ended up sounding rather silly as a result of failing to distinguish between these things and the phenomenon of neurodiversity itself.

"My neurodiversity makes it hard for me to cope with school."
The correct word here would be neurodivergence, rather than neurodiversity. An individual, by definition, cannot be "diverse" or "have diversity."

"Autism and dyslexia are forms of neurodiversity."
Nope. Nope nope nope. There's no such thing as a "form of neurodiversity." Autism and dyslexia are forms of neurodivergence.

NEURODIVERSITY PARADIGM

What It Means:

The neurodiversity paradigm is a specific perspective on neurodiversity - a perspective or approach that boils down to these fundamental principles:

1.) Neurodiversity is a natural and valuable form of human diversity.

2.) The idea that there is one "normal" or "healthy" type of brain or mind, or one "right" style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one "normal" or "right" ethnicity, gender, or culture.

3.) The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.

What It Doesn't Mean:

The neurodiversity paradigm provides a philosophical foundation for the activism of the Neurodiversity Movement, but the two aren't the same. For instance, there are people working on developing inclusive education strategies based on the neurodiversity paradigm, who don't identify as social justice activists or as part of the Neurodiversity Movement.
"Those who have embraced the neurodiversity paradigm, and who truly understand it, do not use pathologizing terms like 'disorder' to describe neurocognitive variants like autism."
Example of Correct Usage:

NEURODIVERSITY MOVEMENT

What It Means:

The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.

What It Doesn't Mean:

The Neurodiversity Movement is not a single group or organization, is not run by any single group or organization, and has no leader. Like most civil rights movements, the Neurodiversity Movement is made up of a great many individuals, some of them organized into groups of one sort or another. These individuals and groups are quite diverse in their viewpoints, goals, concerns, political positions, affiliations, methods of activism, and interpretations of the neurodiversity paradigm.

The Neurodiversity Movement began within the Autism Rights Movement, and there is still a great deal of overlap between the two movements. But the Neurodiversity Movement and the Autism Rights Movement are not one and the same. The most significant distinction between the two is that the Neurodiversity Movement seeks to be inclusive of all neurominorities, not just Autistics. Also, there some who advocate for the rights of Autistics but who cannot rightly be considered part of the Neurodiversity Movement because they still consider autism to be a medical pathology or "disorder," a view at odds with the neurodiversity paradigm.

NEURODIVERGENT and NEURODIVERGENCE

What It Means:

Neurodivergent, sometimes abbreviated as ND, means having a mind that functions in ways which diverge significantly from the dominant societal standards of "normal."

Neurodivergent is quite a broad term. Neurodivergence (the state of being neurodivergent) can be largely or entirely genetic and innate, or it can be largely or entirely produced by brain-altering experience, or some combination of the two. Autism and dyslexia are examples of innate forms of neurodivergence, while alterations in brain functioning caused by such things as trauma, long-term meditation practice, or heavy usage of psychedelic drugs are examples of forms of neurodivergence produced through experience.

A person whose neurocognitive functioning diverges from dominant societal norms in multiple ways - for instance, a person who is Autistic, dyslexic, and epileptic - can be described as multiply neurodivergent.

Some forms of innate or largely innate neurodivergence, like autism, are intrinsic and pervasive factors in an individual's psyche, personality, and fundamental way of relating to the world. The neurodiversity paradigm rejects the pathologizing of such forms of neurodivergence, and the Neurodiversity Movement opposes attempts to get rid of them.

Other forms of neurodivergence, like epilepsy or the effects of traumatic brain injuries, could be removed from an individual without erasing fundamental aspects of the individual's selfhood, and in many cases the individual would be happy to be rid of such forms of neurodivergence. The neurodiversity paradigm does not reject the pathologizing of these forms of neurodivergence, and the Neurodiversity Movement does not object to consensual attempts to cure them (but still most definitely objects to discrimination against people who have them).

Thus, neurodivergence is not intrinsically positive or negative, desirable or undesirable - it all depends on what sort of neurodivergence one is talking about.

The terms neurodivergent and neurodivergence were coined in the year 2000 by Kassiane Asasumasu, a multiply neurodivergent neurodiversity activist.

What It Doesn't Mean:

Neurodivergent is not a synonym for autistic. There are countless possible ways to be neurodivergent, and being autistic is only one of those ways. There are myriad ways of being neurodivergent that have no resemblance or connection to autism whatsoever. Never, ever use neurodivergent as a euphemism for autistic. If you mean that someone is autistic, say they're autistic. It's not a dirty word.
"Our school aims to be inclusive of students who are Autistic, dyslexic, or otherwise neurodivergent, though there are some types of neurodivergence that we're still seeking ways to accommodate." "This group is for people who identify as both queer and ND (neurodivergent)."
Examples of Correct Usage:

NEUROTYPICAL, or NT

What It Means:

Neurotypical, often abbreviated as NT, means having a style of neurocognitive functioning that falls within the dominant societal standards of "normal."

Neurotypical can be used as either an adjective ("He's neurotypical") or a noun ("He's a neurotypical").

Neurotypical is the opposite of neurodivergent. Neurotypicality is the way-of-being from which neurodivergent people diverge. Neurotypical bears the same sort of relationship to neurodivergent that straight bears to queer.

What It Doesn't Mean:

Neurotypical is not synonymous with non-autistic.

Neurotypical is the opposite of neurodivergent, not the opposite of autistic. Autism is only one of many forms of neurodivergence, so there are many, many people who are neither neurotypical nor autistic. Using neurotypical to mean non-autistic is like using "white" to mean "not black."

Also, neurotypical is not a derogatory word, and has no intrinsic negative connotation. Of course, sometimes people use the word in the context of criticizing the behavior of neurotypicals, but that doesn't make it an intrinsically negative word. A lot of people criticize the behavior of men, too, but that doesn't make "man" an intrinsically derogatory word.
"If the primary language of the society in which you were born is well-suited to the purpose of describing your sensory experiences, your needs, and your thought processes, you may have neurotypical privilege." "My sister is NT, but after growing up with an Autistic father and brother, she's quite at ease with other people's neurodivergence."
Examples of Correct Usage:

Example of Incorrect Usage:

"Is your daughter Autistic or neurotypical?"
This isn't a well-worded question because there are other possibilities. The daughter in question might be non-autistic, but might also not qualify as neurotypical - she might, for instance, be dyslexic or have Down Syndrome.

NEUROMINORITY

What It Means:

A neurominority is a population of neurodivergent people about whom all of the following are true:

1.) They all share a similar form of neurodivergence.

2.) The form of neurodivergence they share is one of those forms that is largely innate and that is inseparable from who they are, constituting an intrinsic and pervasive factor in their psyches, personalities, and fundamental ways of relating to the world.

3.) The form of neurodivergence they share is one to which the neurotypical majority tends to respond with some degree of prejudice, misunderstanding, discrimination, and/or oppression (generally facilitated by classifying that form of neurodivergence as a medical pathology).

Examples of neurominority groups include Autistic people, dyslexic people, and people with Down Syndrome.

It's also possible to be neurodivergent without being a member of a neurominority group. Examples include people with acquired traumatic brain injuries, and people who have altered their own neurocognitive functioning through extensive use of psychedelic drugs.

The word neurominority can function as either a noun (as in, "Autistics are a neurominority") or an adjective (as in, "Autistics are a neurominority group").

NEURODIVERSE

What It Means:

A group of people is neurodiverse if one or more members of the group differ substantially from other members, in terms of their neurocognitive functioning.

Or, to phrase it another way, a neurodiverse group is a group in which multiple neurocognitive styles are represented.

Thus, a family, the faculty or student body of a school, the population of a town, or the cast of characters of a TV show would be neurodiverse if some members had different neurocognitive styles from other members - for instance, if some members were neurotypical while others were Autistic.

What It Doesn't Mean:

Many people mistakenly use neurodiverse where the correct word would be neurodivergent.

Of all the errors that people make in writing and speaking about neurodiversity, the misuse of neurodiverse to mean neurodivergent is by far the most common.

There is no such thing as a "neurodiverse individual." The correct term is " neurodivergent individual." An individual can diverge, but an individual cannot be diverse.

Neurodiverse does not mean "non-neurotypical." The opposite of neurotypical is neurodivergent, not neurodiverse. Neurodiverse cannot be used to mean "non-neurotypical," because neurotypical people, like all other human beings, are part of the spectrum of human neurodiversity. The opposite of neurodiverse would be neurohomogenous (meaning "composed of people who are all neurocognitively similar to one another").

To refer to neurominority groups or neurodivergent individuals as "neurodiverse" is incorrect grammatically, because diverse doesn't mean different from the majority, it means made up of multiple different types. So an individual can never be diverse, by definition. And a group where everyone is neurodivergent in more or less the same way (e.g., a group composed entirely of Autistic people) wouldn't be "neurodiverse," either.

The only appropriate and grammatically correct use of the term neurodiverse is when it's used to describe a group of people whose members differ neurocognitively from each other. In other words, a classroom where everyone is Autistic is not neurodiverse, but a classroom where some students are neurotypical and some aren't is neurodiverse.

Humanity is neurodiverse, just as humanity is racially, ethnically, and culturally diverse. By definition, no human being falls outside of the spectrum of human neurodiversity, just as no human being falls outside of the spectrum of human racial, ethnic, and cultural diversity.

In addition to being incorrect, it's also oppressive to misuse the word "diverse" to mean "minority," because this misuse of "diverse" is based in the intrinsically oppressive assumption that there's a default "normal" way of being and that "diversity" is about adding non-normative individuals into the "normal" default environment. This is the assumption that allows tokenization to pass for "diversity" in corporations, schools, and other social institutions.

We can see this same oppressive misuse of the word "diverse" in the discourse of racists who use the term "diverse" as a euphemism for "non-white." This usage seeks to twist the definition of the word "diverse" to mean "not part of the privileged in-group." Again, that's not what the word means, and misusing it in that particular way serves to reinforce a racist mindset in which white people are seen as intrinsically separate from the rest of humanity, rather than as just another part of the spectrum of human ethnic diversity.

It is the same with the misuse of the term neurodiverse to mean "non-neurotypical." To describe an Autistic, dyslexic, or otherwise neurodivergent person as a "neurodiverse individual" is not merely an incorrect usage of the word "diverse"--it also serves to reinforce an ableist mindset in which neurotypical people are seen as intrinsically separate from the rest of humanity, rather than as just another part of the spectrum of human neurodiversity.

In summary, then: misusing the term neurodiverse to mean neurodivergent (i.e., non-neurotypical) is not only plain old bad grammar, it also subtly reinforces ableism and undercuts the fundamental tenets of the neurodiversity paradigm. I hope this explanation will help people to avoid this particular error in the future--and, when possible, to correct such misuse where they encounter it.
"We humans are a neurodiverse species." "We employ a wide variety of creative teaching strategies to accommodate the many different learning styles represented in our highly neurodiverse student body." "My neurodiverse family includes three neurotypicals, two Autistics, and one person who's both ADHD and dyslexic." "I think every single member of their board of directors is neurotypical. An organization that supposedly serves the needs of neurominority children should have a more neurodiverse board."
Examples of Correct Usage:

Examples of Incorrect Usage:

"This group welcomes Autistics and other neurodiverse people."
It's nice to be welcomed, but there's no such thing as a "neurodiverse person." the correct phrase here would be "Autistics and other neurodivergent people."

"This group is open to both neurotypicals and the neurodiverse."
No, no, no. "The neurodiverse?" Seriously? What does that even mean? The spectrum of neurodiversity encompasses the entire human species, so one can't label any subset of the human species as "the neurodiverse." And neurotypicals are part of the spectrum of human neurodiversity, so it makes no sense to say "neurotypicals and the neurodiverse," as if those were two separate things. The correct way to say this would be, "This group is open to both neurotypicals and the neurodivergent."

I hope this list of definitions will help to foster greater clarity and understanding, and more accurate writing, when it comes to the terminology around neurodiversity. I encourage readers to share, cite, or quote from this piece, anywhere it might be useful. If you're writing up submission guidelines for neurodiversity-related writings, for a journal, anthology, conference, or other project, feel free to include a link to this post in your guidelines. If you encounter a journalist who's doing a piece on a neurodiversity-related topic, or a group of college students who are writing about neurodiversity, please share this piece with them. And please feel free to use this piece as a resource in any situation in which there's confusion about what any of these terms mean.

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NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS * NEUROQUEER

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Nick Walker, PhD I wrote "Neurodiversity: Some Basic Terms & Definitions" back in 2014. So far, of all the pieces I've written, this is the one that's been most frequently cited in other people's work (academic and otherwise).

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SSC, Rack, Prick, and CCCC safety protocols

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SSC, RACK, and PRICK are the three most common approaches to kinky play. But what do they stand for?

As with any subculture, there's a tendency towards tribalism when it comes to these various schools of thought.

If you're new to the kink scene, we'll let you in on a little secret: kinksters love (and we do mean love) acronyms. Below we've listed the most well-known approaches to kinky play.

SSC: Sane, Safe, and Consensual

In the 1980s, gay S&M clubs saw so-called "Dominants" preying on newcomers and pushing boundaries, limits, and consent. But good kinksters existed too, and within the S&M communities they grew increasingly more passionate about education and advocacy.

In 1983, a NYC non-profit organization called GMSMA (Gay Male S/M Activists) announced in a newsletter that it was "seriously interested in safe, sane, and consensual S/M".

"...to help create a more supportive S/M community for gay males, whether they desire a total lifestyle or an occasional adventure, whether they are just coming out into S/M or are long experienced."

- GMSMA 1983

The ethos of Safe, Sane, and Consensual grew in popularity up to the inclusion of the phrase as a slogan for marches on Washington by Lesbian & Gay Rights and the S/M Leather Fetish Contingent in 1987 and 1993. As with most of BDSM history, it was such activists as these who moved conversations forward and created the rich history of the kink community.

The dawn of the internet brought with it unprecedented means of connecting with other people across the globe. Suddenly, kinksters were presented with easier means to find others in their communities, to organize, and to discuss concepts of what it means to engage in kink.

One kinkster in particular, Gary Switch, coined the concept of Risk-Aware Consensual Kink (RACK) in 1999.

RACK was a response to SSC on two main levels:

RACK acknowledges that not every kink is necessarily a 'safe' one

Specifically for edge players, SSC created a bit of a roadblock to what they wanted to explore. With RACK, kinksters felt more emboldened to engage in activities such as fire play or blood play. This is why you'll most often see RACK as the preferred school of thought for kinksters who play on the edge.

RACK argues that the concept of what is 'sane' is subjective

What one person considers sane, another may consider to be completely outside the realms of a sound mind.

What ultimately matters within RACK is that participants identify and discuss potential risks, formulate a risk mitigation plan for the activity, and engage in it only through mutual consent and understanding of those risks.

PRICK: Personal Responsibility Informed Consensual Kink

It's unclear where and when PRICK arose, but the odds are that much like its predecessor, it was born of internet discussions.

PRICK was a response to RACK, arguing that emphasis needed to be placed on the fact that every human being has a personal responsibility to take ownership of their actions.

This means that participants in a scene must all have taken the responsibility of researching the risks inherent in the activity. Each individual is 100% responsible for being educated, being honest about feelings and concerns, and recognizing the part they play in the overall scene.

PRICK does not mean that a more experienced kinkster should not take it upon themselves to inform the less-experienced party about potential risks.

What it does mean, however, is that newcomers should take it upon themselves to ask questions. In order to mitigate a risk, we must not only be informed about it, we must also talk about it.

Which is the best in BDSM: SSC, RACK, or PRICK?

That is your personal decision, and if we're being honest, not every kinkster professes to follow an acronym-based ethos.

We won't tell you which acronym to choose, or even that you have to choose one to be a 'legit' kinkster. When kinksters say that they ascribe to one of these approaches, they are endorsing the approach because it speaks to them and the activities in which they engage.

One thing we can say for sure is this: there may be disagreements about how best to approach kinky activities, but "consent" remains at the core of what we do. We encourage you to speak to members of your community and explore why they prefer one over the other.

Did you know? This page is also a component of Kynk at a Glance, our handbook for beginners to kink and BDSM.

SSC, RACK, and PRICK are the three most common approaches to kinky play. But what do they stand for?

As with any subculture, there's a tendency towards tribalism when it comes to these various schools of thought.

If you're new to the kink scene, we'll let you in on a little secret: kinksters love (and we do mean love) acronyms. Below we've listed the most well-known approaches to kinky play.

SSC: Sane, Safe, and Consensual

In the 1980s, gay S&M clubs saw so-called "Dominants" preying on newcomers and pushing boundaries, limits, and consent. But good kinksters existed too, and within the S&M communities they grew increasingly more passionate about education and advocacy.

In 1983, a NYC non-profit organization called GMSMA (Gay Male S/M Activists) announced in a newsletter that it was "seriously interested in safe, sane, and consensual S/M".

"...to help create a more supportive S/M community for gay males, whether they desire a total lifestyle or an occasional adventure, whether they are just coming out into S/M or are long experienced."

- GMSMA 1983

The ethos of Safe, Sane, and Consensual grew in popularity up to the inclusion of the phrase as a slogan for marches on Washington by Lesbian & Gay Rights and the S/M Leather Fetish Contingent in 1987 and 1993. As with most of BDSM history, it was such activists as these who moved conversations forward and created the rich history of the kink community.

The dawn of the internet brought with it unprecedented means of connecting with other people across the globe. Suddenly, kinksters were presented with easier means to find others in their communities, to organize, and to discuss concepts of what it means to engage in kink.

One kinkster in particular, Gary Switch, coined the concept of Risk-Aware Consensual Kink (RACK) in 1999.

RACK was a response to SSC on two main levels:

RACK acknowledges that not every kink is necessarily a 'safe' one

Specifically for edge players, SSC created a bit of a roadblock to what they wanted to explore. With RACK, kinksters felt more emboldened to engage in activities such as fire play or blood play. This is why you'll most often see RACK as the preferred school of thought for kinksters who play on the edge.

RACK argues that the concept of what is 'sane' is subjective

What one person considers sane, another may consider to be completely outside the realms of a sound mind.

What ultimately matters within RACK is that participants identify and discuss potential risks, formulate a risk mitigation plan for the activity, and engage in it only through mutual consent and understanding of those risks.

PRICK: Personal Responsibility Informed Consensual Kink

It's unclear where and when PRICK arose, but the odds are that much like its predecessor, it was born of internet discussions.

PRICK was a response to RACK, arguing that emphasis needed to be placed on the fact that every human being has a personal responsibility to take ownership of their actions.

This means that participants in a scene must all have taken the responsibility of researching the risks inherent in the activity. Each individual is 100% responsible for being educated, being honest about feelings and concerns, and recognizing the part they play in the overall scene.

PRICK does not mean that a more experienced kinkster should not take it upon themselves to inform the less-experienced party about potential risks.

What it does mean, however, is that newcomers should take it upon themselves to ask questions. In order to mitigate a risk, we must not only be informed about it, we must also talk about it.

Which is the best in BDSM: SSC, RACK, or PRICK?

That is your personal decision, and if we're being honest, not every kinkster professes to follow an acronym-based ethos.

We won't tell you which acronym to choose, or even that you have to choose one to be a 'legit' kinkster. When kinksters say that they ascribe to one of these approaches, they are endorsing the approach because it speaks to them and the activities in which they engage.

One thing we can say for sure is this: there may be disagreements about how best to approach kinky activities, but "consent" remains at the core of what we do. We encourage you to speak to members of your community and explore why they prefer one over the other.

Did you know? This page is also a component of Kynk at a Glance, our handbook for beginners to kink and BDSM.

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Kink Ideologies: SSC, RACK, and PRICK - KYNK 101

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SSC, RACK, and PRICK are the three most common approaches to kinky play. But what do they stand for? As with any subculture, there's a tendency towards tribalism when it comes to these various schools of thought.

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Ideas for incorporating gender discussions into sessions-2

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Identifying and Expressing Emotions Powepoint

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Identifying and Expressing Feelings Easy or Tricky Talking Mat Visuals

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How I feel inside when I am angry talking mat header

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How I feel inside when I am angry talking mat header

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What do I do when I am angry talking mat header visuals

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What do I do when I am angry talking mat or mindmap visuals

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Talking Mat Header Things I do when I am happy

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Talking mat Visuals Things I do when I am happy

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April is autism acceptance month. Truly accepting autism requires both understanding neurodiversity and unlearning neuronormativity. The discussion that follows aims to provide some steps toward this process of understanding and unlearning. For example, did you know that it is incorrect and potentially problematic to refer to individuals as neurodiverse? And were you aware that even the common and seemingly neutral language of 'neurotypical' or 'neurodivergent' in fact reflects neuronormative assumptions? To understand why, let's unpack the notions of neurodiversity and neuronormativity, starting with some brief definitions, then expanding on each further.

Neuronormativity refers to the privileged, so-called neurotypical set of assumptions, norms, and practices that construes so-called neurotypicality as the sole acceptable or superior mode of cognition, and that stigmatizes attitudes, behaviors, or actions that reflect so-called neurodivergent modes of cognition as deviant or inferior. Neuronormative assumptions, norms, and practices uphold standards regarding, for example, what is neurotypically considered appropriate eye contact, facial expressions, prosody, conversational flow, processing, and responsiveness-all of which can be more difficult for so-called neurodivergent individuals to understand, sense, or apply due to naturally occurring variations in their neurocognitive profiles.

The term 'neurodiversity' was coined in 1998 by Australian sociologist Judy Singer in her MA thesis. Neurodiversity refers both to a natural fact and to a sociopolitical movement. As a natural fact, neurodiversity corresponds to the range of neurocognitive variation that is naturally present across the human population. For this reason, while collectives such as humanity can be neurodiverse, a single person cannot be neurodiverse. In other words, neurodiversity, much like biodiversity or racial diversity, is a property of groups and not of individuals. As a sociopolitical movement, the neurodiversity movement advocates for the equal recognition and inclusion of the various types of neurocognitive profiles that make up neurodiversity throughout humanity. In this sense, the neurodiversity movement fundamentally aims to resist and dismantle neuronormativity, or the socially constructed hierarchization among naturally occurring variations in neurocognitive profiles. Let's unpack each of these points about neurodiversity and neuronormativity further.

As a natural fact, neurodiversity is a part of biodiversity. Neurodiversity is the set of neurocognitive profiles that correspond to naturally occurring neurocognitive variations among humans. From this natural variation, people in positions of epistemic authority (e.g., some doctors, scientists, or researchers) have over time come to create normative categories that divide neurodiversity into two main subsets: on the one hand, neurocognitive profiles categorized as normal or typical; on the other hand, neurocognitive profiles categorized as abnormal, atypical, or divergent. So-called neuroatypical or neurodivergent profiles include for example autism, so-called ADHD profiles, dys- profiles (dyslexia, dysorthography, dyscalculia, dyspraxia), and Tourette profiles. Through this neuronormative process of categorization as typical or as atypical, individuals who fall into the 'typical' or 'normal' category come to be viewed and treated as superior, whereas individuals who fall into the 'atypical' or 'abnormal' category come to be viewed and treated as inferior. The neuronormative process of categorizing various neurocognitive profiles thus simultaneously creates a hierarchy among them.

Now, it might seem like these categories of neurotypical/atypical simply track preexisting natural kinds, or that they merely capture the statistical prevalence of a certain type of neurocognitive profile over others-but that, either way, hierarchization is an unfortunate byproduct of the process of categorizing rather than an inherent feature of this categorization process. The categories of neurotypical/atypical, however, are a matter neither of natural kinds nor of statistics, and the hierarchization they imply is an inherent rather than an accidental feature. Indeed, if these categories merely tracked natural kinds, all they would do would be to apply descriptive labels to preexisting entities found in nature. Yet the only preexisting thing to be found in nature, in this case, is neurodiversity as a whole-that is, the range of neurocognitive variation that is naturally present across the human population. Any attempt to sort these various neurocognitive profiles into particular subsets, such as typical or atypical, is going to have to rely on some criterion according to which various neurocognitive profiles can be sorted into one or the other category. In this case, the seemingly innocuous language of 'neurotypicality' and 'neurodivergence,' which seems to track natural kinds, in fact reflects an implicit reliance on a neuronormative norm that privileges so-called neurotypical profiles and marginalizes so-called neurodivergent profiles. To grasp how the language of 'neurotypical' and 'neurodivergent' is fundamentally grounded in neuronormativity, consider what happens if we take neurodiversity rather than neuronormativity as the norm or point of reference. If neurodiversity as a whole is the norm, the grounds on which to make the distinction between typical and atypical or divergent neurocognitive profiles no longer hold: typical and atypical or divergent in relation to what, or to whom?

Of course, so-called neurotypical profiles seem to be more prevalent across humans and hence may constitute a statistical norm-a statistical norm that nonetheless often surreptitiously and unjustifiably turns into a social and moral norm. But this still does not warrant creating and using the categories and language of 'typical' and 'atypical.' To understand why, let's take an example from biodiversity, namely the natural variation in eye color. Within the human species, blue eyes are much less prevalent than brown eyes. Yet we do not refer to blue-eyed people as being 'chromoatypical' or 'chromodivergent.' Indeed, since in this case biodiversity-rather than brown eyes-is the norm or point of reference, it does not make sense to select the particular natural variation of blue eyes as being different, atypical, or divergent. If biodiversity is the norm, blue eyes are as different from brown eyes as brown eyes are from blue eyes. To single out blue eyes as different would be to institute brown eyes-rather than biodiversity-as the norm. Similarly, if neurodiversity-rather than neuronormativity-is the norm or point of reference, then it does not make sense to speak of 'neuroatypical' or 'neurodivergent' people. If neurodiversity is the norm, various neurocognitive profiles are all equally different from each other. To single out some neurocognitive profiles (i.e., so-called neuroatypical or neurodivergent profiles) as different is to institute other neurocognitive profiles (i.e., so-called neurotypical profiles)-rather than neurodiversity-as the norm.

In other words, far from tracking preexisting natural kinds or statistical prevalence, the categories and language of 'neurotypical' and 'neurodivergent' betray a neuronormative point of reference. In order to emphasize that so-called neurotypical and so-called neurodivergent profiles correspond not to natural categories but rather to different social positions and statuses created by power relations (here, neuroableism and neuronormativity), it would therefore be more appropriate to speak of 'neuronormalized' profiles for so-called neurotypical profiles and of 'neurominoritized' profiles for so-called neuroatypical or neurodivergent profiles. Terms such as 'neuronormalized' and 'neurominoritized' have the advantage of signaling the power relations that produce these categories. By contrast, terms such as 'neurotypical' or 'neuroatypical' conceal these power relations and therefore suggest that these are natural categories that somehow preexist these power relations. Yet, as noted above, while neurocognitive variation within the human species is indeed natural, the status of 'normal/typical' or 'abnormal/atypical' that is attributed to these different natural variations is not natural but rather the product of power relations. By drawing attention to power relations, the terms 'neuronormalized' or 'neurominoritized' thus make it easier to grasp the dimensions of privilege and marginalization that are fundamentally at play here.

Indeed, foregrounding the oppressive power relations that produce dominant and non-dominant social groups is important not only in order to politicize and denaturalize systems of categories and hierarchies that might otherwise seem neutral or natural, but also, relatedly, in order to highlight what might be termed here neuronormalized (or so-called neurotypical) privilege. Indeed, any system of oppression, whether it be sexism, racism, or neuroableism, is built around power relations that systematically privilege one group that thereby becomes the dominant group (men, people racialized as white, neuronormalized or so-called neurotypical people), while systematically subordinating or marginalizing another group that thereby becomes the non-dominant group (women or other gender minorities, people racialized as non-white, neurominoritized or so-called neuroatypical or neurodivergent people). Just as sexism or racism are systems of oppression that are produced and maintained by patriarchy or white supremacy; i.e., sets of assumptions, norms, and practices that discriminate against women and other gender minorities or people racialized as 'non-white'; neuroableism is a system of oppression that is produced and maintained by neuronormativity; i.e., the set of assumptions, norms, and practices that discriminate against neurominoritized people (neuronormatively known as neuroatypical or neurodivergent people).

Because our everyday environments are often designed, even unintentionally, by and for members of dominant groups, neuronormalized people are privileged in that their environment is most often aligned with their mode of neurocognitive functioning. That is, their social and physical environment is designed in a way that supports and enables them, rather than in a way that constrains and disables them. When you have the privilege of living, navigating, and interacting in an environment designed in a way that suits you, the fact that you encounter few or no obstacles in that environment tends to go unnoticed. For this reason, privilege is most often imperceptible, unconscious, and taken for granted. Members of dominant groups often do not realize that they occupy a privileged social position and therefore tend to lack critical reflection about the power relations that underlie this privileged position. This lack of awareness of neuronormalized privilege is manifested among other things in the fact that the word 'autistic' is much more well-known than the word 'allistic' (meaning non-autistic). This terminological asymmetry reflects the fact that the privileged position of non-autistic, neuronormalized people is so much taken for granted that the need to identify or name it does not even seem necessary. Yet failing to name privilege serves to conceal the power relations that keep one group in a dominant position and the other in a non-dominant position.

One way power relations maintain neurominoritized people in a non-dominant position is via often unreflective yet harmful language. For example, while important in the legal context, the term 'accommodations' betrays a view of neurominoritized people (and disabled people more broadly) as burdens needing to be 'accommodated'-at least, as long as their needs are deemed 'reasonable' by the neuronormative powers that be who designed the social and physical environment in ways that completely ignore the needs and modes of functioning of neurominoritized people, thereby effectively forcing neurominoritized people to consistently 'accommodate' neuronormalized people's needs and modes of functioning without much, if any, chance of reciprocity. This is why it is preferable to speak of 'adaptive measures' or 'inclusive measures,' to emphasize that it is the neuronormative environment that by default is neither adapted for, nor inclusive of, neurominoritized people. In this sense, the terms 'adaptive measures' or 'inclusive measures' have two advantages. First, they emphasize that the problem does not lie in the individual (who is supposedly problematic and therefore needs to be 'accommodated'), but rather in the environment (that is problematic because it is ill-adapted and non-inclusive). Second, they emphasize that what is at stake is a matter of justice and a moral (and often legal) right, not a matter of charity or goodwill on the part of the relevant authorities.

Another way in which the unreflective yet harmful use of language maintains neurominoritized people in a non-dominant position is the overwhelming tendency to refer to neurominoritized profiles (e.g., autism, so-called ADHD profiles, dys- profiles, or Tourette profiles) as 'syndromes' or 'disorders' and to describe them in terms of 'deficits' or 'deficiencies'-though note how the foregoing phrasing intentionally does not use this pathologizing and stigmatizing language. Indeed, this language is inaccurate as it continues to take neuronormativity instead of neurodiversity as the norm (much as if, in the context of computers, where PC computers are more common than Mac computers, we were to refer to Mac computers as displaying or 'suffering from' Windows deficits, which would make little sense). Instead, members of the Autistic community generally adopt identity-first language (e.g., 'Autistic people' or 'Autistics') and reject the person-first language (e.g., 'person with autism' or 'person with ASD') that is pervasive in the medical and social spheres and that betrays a negative view of autism as a burden or a problem. Additionally, one should not use the term 'neurodiverse' as a euphemism for 'Autistic.' Using 'neurodiverse' to refer to individuals is not only incorrect, as explained above, but as a euphemism it also betrays neuronormative discomfort with autism that only reinforces the stigma around-and indeed the fear of-autism.

Whether about autism or other neurominoritized profiles, demeaning and misleading language contributes both to the misrepresentation and misunderstanding of people who present these profiles as well as to their devaluation as reliable epistemic agents; i.e., as people who are able to produce, use, and share valuable knowledge, including knowledge about their own experience of themselves and of the world. In other words, using pathologizing and stigmatizing language contributes to the lack of credibility and intelligibility that neurominoritized people often face. Philosophers refer to these credibility and intelligibility deficits stemming from biases as testimonial and hermeneutical injustice respectively. Testimonial injustice occurs when a person is not adequately consulted or believed because she belongs to a non-dominant group. Hermeneutical injustice occurs when a person's experience or situation is not adequately represented or understood because she belongs to a non-dominant group. Testimonial and hermeneutical injustice are both types of epistemic injustice; i.e., an injustice that someone suffers in their capacity as an epistemic agent. Indeed, if you are not adequately consulted, believed, represented, or understood, this will seriously undermine your ability to produce, use, or share knowledge-or what philosophers call epistemic agency. Here, neurominoritized people may face testimonial and hermeneutical injustice due to neuronormative biases. That is, neurominoritized people may not be adequately consulted, believed, represented, or understood because they may avoid eye contact or otherwise navigate conversations in a way that differs from neuronormative standards and expectations, or because they are portrayed as deficient or incompetent.

In response to the widespread misrepresentation and discreditation (i.e., epistemic injustice) that neurominoritized people face, the neurodiversity movement has adopted the slogan from the disability movement: 'Nothing about Us without Us.' In the context of the neurodiversity movement, the injunction to do or say 'nothing about us without us' emphasizes the necessity of including neurominoritized people in the production of public policies, social discourses, academic knowledge, and scientific research about neurominoritized people. As a sociopolitical movement, the neurodiversity movement thus aims to center the perspectives, experiences, needs, and interests of neurominoritized people as they themselves-rather than neuronormalized people-express or communicate them, whether or not this expression or communication takes a verbal or oral form. In this sense, the neurodiversity movement's call for 'Nothing about Us without Us' is best construed as a call to reclaim epistemic authority and agency. This will require unlearning neuronormativity, or all the aforementioned standards and expectations that so deeply pervade our neuronormative worlds. Concretely, this requires:

understanding what neurodiversity and neuronormativity are (see definitions above);

understanding that neuroableism is a system of oppression;

becoming aware of neuronormalized privilege;

recognizing that you may know very little, if anything, about neurominoritized profiles and people, and that what you think you do know may be largely inaccurate;

suspending judgment toward neurominoritized people;

using non-stigmatizing language (see terms to avoid above);

actively unlearning the reflexes (habits, judgments, behaviors, practices) that neuronormativity inculcates (e.g., expecting or relying on orality, phone calls, in-person meetings, quick responses, eye contact, physical touch, facial expressions);

seeking out information on neurominoritized profiles provided by first-person accounts of neurominoritized people (e.g., autobiographies, websites, blogs, social media);

privately and confidentially asking neurominoritized people with whom you interact what you can do to include them effectively (rather than purely symbolically) and adapting interactions, practices, or the environment to their needs or modes of functioning;

understanding that when they request adaptive or inclusive measures, neurominoritized people are not being difficult or overly demanding, any more than someone who needs glasses or someone who must avoid peanuts.

Acknowledgments: I am grateful to the students and colleagues with whom I have had the opportunity to discuss neurodiversity and neuronormativity. In particular, numerous stimulating conversations and exchanges with Mylène Legault, Pierre Poirier, and Luc Faucher have been tremendously helpful in articulating some of the points in this blog post.

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April is autism acceptance month. Truly accepting autism requires both understanding neurodiversity and unlearning neuronormativity. The discussion that follows aims to provide some steps toward this process of understanding and unlearning. For example, did you know that it is incorrect and potentially problematic to refer to individuals as neurodiverse?

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Penguin Pebbling - An Autistic Love Language

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Penguins pass pebbles to other penguins to show they care. Penguin Pebbling is a little exchange between two people to show that they care

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Autistic Burnout: A Brief Guide to Recovery and Prevention

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Autistic Burnout: A Brief Guide to Recovery and Prevention

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More than Procrastination: Strategies for Navigating Autistic Inertia and ADHD Paralysis

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More than Procrastination: Strategies for Navigating Autistic Inertia and ADHD Paralysis

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Debbie Reber 00:00

This season of Tilt Parenting is being brought to you by the Differently Wired Club. If you're looking to dive deeper with me and get live personal coaching, support, be part of an incredible parent community and focus on creating significant change in your parenting world. Check out my Differently Wired Club program. Doors open for a few days at the end of every month, Learn more at tiltparenting.com/club.

Kristy Forbes 00:24

And then I hear parents who don't have that information using words like regression, my child regressed, they were doing so well socially. They were doing so well academically and then they regressed. And the first thing I think when I hear that is they burnt out.

Debbie Reber 00:46

Welcome to Tilt Parenting, a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I'm your host Debbie Reber and welcome to the winter season of 2023. I am so happy to be back in the podcast chair and to be able to share with you the interviews I've been working so hard on over the past few months. And I am really honored to kick off the season with a powerful conversation about autistic burnout with autism and neurodiversity Support Specialist Kristy Forbes. I know that autistic burnout looks and feels different from the kind of burnout experienced by neurotypical people and so I wanted to explore this topic with someone who has a deep understanding of an experience with autistic burnout, both as the parent of autistic children and as an autistic person herself. And my hunch is many of you are already familiar with Kristy Forbes incredible work in the neurodiversity space through her resource Intune pathways. Kristy's work is informed by her extensive professional experience as an educator as an integration aid to children with social, emotional and behavioral differences and as a childhood behavioral and Family Support Specialist. Her most valuable insights, however, come from lived experience. Kristy is formally identified autistic Attention Deficit Hyperactivity Disorder and pathological demand avoidance, as well as being a parent to four neurodivergent children.

Debbie Reber 02:18

So for today's episode, Kristy and I talked about what exactly autistic burnout is and how it presents, why deep rest is critical for someone experiencing autistic burnout, and how autistic burnout is differentiated from mood disorders or depression. We also talk frankly, about the challenges of seeing burnout in autistic children through a neuro normative lens and how that may lead to strategies and therapies that might just be the opposite of what a child in autistic burnout actually needs. This is such a rich, compassionate conversation truly a salve for parents who are struggling with their child's burnout, and are feeling overwhelmed and unseen. I hope you find this comforting and empowering. And just so you know, this is the second time Kristy has been on the show. If you haven't listened to our first conversation where we talked about PDA and more, you can check that out by going to tilt parenting.com/session 182.

Debbie Reber 03:19

Before I get to our conversation, I have an interesting and exciting update to share with you. There's a new way to engage with me and the podcast this season. I absolutely love doing this show and getting to have thoughtful conversations with fascinating guests like Kristy. Every single episode sparks me in unexpected ways. And I always find myself wanting to go deeper into the topics with other people who are as interested as I am. And now we can. I am partnering with a new social platform for book and podcast clubs called Fable to host a special Tilt Parenting Pod Club. What's a pod club? It's like a book club, but for podcasts. So together, we can go deeper on every single episode and share highlights, comments, questions, related resources and really just talk about whatever we want to talk about. It's also completely free. So it's starting this week with today's conversation with Kristy Forbes. So to join my new Tilt Parenting Pod Club, just download the Fable app on your phone or device and search for Tilt Parenting or you can go to tiltparenting.com/fable for a direct link to our Pod Club. I hope to see you there. Okay, and now here is my conversation with Christy Forbes on autistic burnout.

Debbie Reber 04:45

Hey, Kristy, welcome back to the podcast.

Kristy Forbes 04:47

Thank you so much for having me. I'm so excited to be back.

Debbie Reber 04:51

It has been a couple of years and actually, it's been over three years since you were on the show. And I went back and looked at that episode and it's been downloaded about 30,000 times. So it's pretty high up there in terms of my more popular episodes. And that didn't surprise me when I looked because your work has just kind of exploded and the time since we last talked, I'd love if you could even just give us a little update what has been happening in your world with In Tune Pathways and the work that you're doing with parents.

Kristy Forbes 05:24

That's amazing. It's amazing. But also, I'm not surprised because I know that there's such a need for families to be validated in their experience as well. And I think when we last spoke, I had just started out and I was coming from a space of wanting to share my story as both a parent and a neurodivergent adult. Since then, I have been in community with our hundreds and hundreds of families. I've engaged in private consultation, I offer more programs and services now. But I also became incorporated and started a company. I employ 13 autistic parents of autistic children. We work as a team mentoring other families in a variety of ways. And yes, so much has happened. But yeah, it's an honor to do the work.

Debbie Reber 06:29

That's incredible, first of all, 13 employees and doing this work. And, again, I know so many families in the tillage community turn to you, especially if they have kids who have a PDA profile. And I'm always like, talk to Kristy, go to Kristy, you are such a leader. And I just want to acknowledge the way that you show up is so inspiring. I'm not autistic, I read a lot of your posts on Facebook, and the way that you hold space for your community and speak your truth is so inspirational, I see the way people respond to the rules and the boundaries that you set in your community, and just how proud you are to be who you are. The impact is really huge. And I'm sure that you feel that. But I just want to acknowledge that I think it's really incredible work you're doing.

Kristy Forbes 07:20

Thank you so much. That's really hard for me to hear that sorry. Yeah. So okay. No, it helps me. And I can sit with that discomfort because I lean into the intention. And I really appreciate that. That means a lot. Thank you.

Debbie Reber 07:39

You're so welcome. The reason I wanted to bring you back on the show is because I wanted to go deeper into this idea of autistic burnout, which I know a lot of families deal with. And I think it's something again, that there's not a lot of awareness of, at least here in the US. I know a lot of therapists or people who work with autistic adults, and children may not recognize it or even know what it is. So I'd love to just explore that with you today. It's so important. It's so important. And I can only imagine there are so many people are burned out generally because of the world we're living in right now. But it's a completely different experience for an autistic person. And I wonder if that would be just a good place to start. I don't know if it's like a definition. But how would you describe what autistic burnout is and how it's different from other types of burnout.

Kristy Forbes 08:33

I was laying in bed last night thinking about this, thinking about how for autistic people, there is a cost to everything that we do. There is an emotional, physical, spiritual cost. And that comes along with things that we enjoy as well. And it's so hard because I was reflecting on my own experience of growing up on identified autistic and how I was so fatigued, especially in my teenage years. So incredibly fatigued consistently. And, of course, when that happens for young people, the predominant approach is to encourage us to show up and to overcome and to engage in self care in a neuro normative way. For me, nobody was to blame around that because we didn't know what we knew what we know now but burnout for me, I think people think that it's just being fatigued and tired. It is the complete beginning of shutdown of my sensory channels. So my personal experience is that my hearing my auditory processing is the first thing that I noticed that is impacted and there will either be Not a ringing but a swishing sound in my ears, it will sound as though I'm underwater, my brain will completely scatter. So I can't pin down thoughts. I can't retain information. It's like ADHD on overdrive. It is so incredibly debilitating. Along with that there's the fatigue, there's aching joints. And then there's the overlap for neurodivergent people, whether they're autistic or ADHD, or any other form of neuro divergence, when we are in burnout, particularly if it's prolonged, then we run the risk of developing chronic illnesses that are co occurring conditions for autistic people. And we see things like fibromyalgia, chronic fatigue syndrome, it was my experience as a teenager to have glandular fever, which can develop into chronic fatigue, and it can go undetected for a really long time. And it's very common for autistic people. So sometimes what will happen is, illnesses will be picked up. And we won't realize that along with that is burnout. So we might treat the illness, but still be completely burnt out. Because the only treatment for burnout is rest, deep rest. So it's quite insidious in the way that it can be overlapping with other things and, and misunderstood, but yeah, my experience isn't just fatigue or tiredness, it is complete sensory shutdown,

Debbie Reber 11:41

As you were talking about what it might look like, I was wondering, we know that so many young people now, we're reading more and more about depression and anxiety. And so can it look like that? And we might then, okay, we need to go to the therapist, and we need to work on activating your well being by doing more of this. And can you talk about that mental health piece and how that might be misinterpreted.

Kristy Forbes 12:10

So this is exactly what I was referring to before. I've had my own children in that situation, particularly going through puberty. So puberty for autistic people, is such an incredibly challenging time with those chemical shifts in our brain and also in adulthood, particularly for autistic women, perimenopause and going through menopause can increase our anxiety and our burnout levels. And so when our young people, and not just teenagers, primary age children as well, what happens is, even when we've been identified autistic, there is this neuro normative approach around how to treat burnout. Because it's so misunderstood. And some of those approaches will be things like, you need to be more immersed in community, you need to be around people more, you need to engage with your interests more, you need to do things that connect you to other people more. And if I can be completely honest, that is the last thing someone in burnout needs. Because autistic people require so much downtime, and so much rest and so much solitude during those periods. That being with others, being engaged in conversation, engaging our cognitive brain to be thinking about tasks, and executive functioning and communication. That's the stuff that contributes to burnout. Because we're so limited in our capacity to engage those parts of our brain. So when we're encouraged to engage those parts of our brain, when that's the very thing that puts us into burnout, it's prolonged for years. And then I hear parents who don't have that information using words like regression, my child regressed, they were doing so well, socially. They were doing so well academically, and then they regressed. And the first thing I think when I hear that is they burnt out.

Debbie Reber 14:30

That is such a reframe, just even to think about the seasons that so many families experience of these regressive cycles. And they can almost become predictable, depending on what's happening or what time of year it is and what's happening in school. So that is a really interesting reframe and makes so much sense.

Kristy Forbes 14:50

Yeah, and on top of that, we have autistic folks who are sensitive to seasonal changes which can bring on seasonal depression or anxiety and then There's the fact that we have this hypersensitive neuroception. So that threat response is more prone to consolidating memories that are negative than positive. So our limbic system is working in cohesion with that memory consolidation of negative experiences. So it gets harder to come out of burnout. When our threat response is processing, all of these things that have happened, that can be potentially traumatic. So when I'm in burnout, I do become depressed. Because when you are incapacitated, that's depressing. And so what happens is when you find yourself in that state of being limited, and not having any options, other than to move into deep rest, if you're a person like me, if you have a PDA profile of autism, and you are extremely determined, and yet your body and brain says no, no, no, that right there can push a person into depression very, very quickly, because you're being held hostage to this neurobiology.

Debbie Reber 16:17

Yeah. So as you're sharing that I'm thinking of young people, maybe teenagers who their social life is important to them, or they're putting energy into taking a certain level of classes or you know, so they feel kind of hostage, perhaps, and frustrated that they can't do the things they want to do or engage in the things they want to engage in. And so many of them, my hunch would be to push ahead. But how do we support young people, adolescents, teenagers, or even children to recognize the value of taking that pause and that rest,

Kristy Forbes 16:53

I think it's more about the adults around them. And the way that we're informed as a society, this moves into a whole other topic around accessible health care for autistic people. Because again, there's that predominant messaging around overcoming and accessing forms of care that may not be appropriate for neurodivergent people. What pushes us further into burnout is the panic, and the anxiety around being misunderstood, missing out, not being a part of things when we truly want to. And sometimes our peers won't understand that. And when you're a young person, and you're going through that experience, you are more likely to not understand that experience, either. So we turn against ourselves, then we start self loathing and self rejecting. And it just feeds this process. On top of that, we often sense the desperation in our families who are struggling as well, who want desperately to help us, but are also encouraged and at times pressured, blamed and shamed around how to push us through. So the element of needing that deep rest, most of the time isn't even recognized or touched on as an option, because it's not something that society encourages or values anyway, I mean, at the risk of getting political. We are a capitalist society and functionality and productivity is really valued and rewarded. So knowing that you're autistic, and largely misunderstood as the beginning, and then going into burnout. And feeling like you're at the bottom of the chain of humanity is not a good place to be. So I think the adults are where we need to start having conversations like this so that parents no, this is not regression, it's burnout. And it requires deep rest.

Debbie Reber 19:01

And as you were explaining that, I'm just realizing how convoluted it can be. There are so many pressures and messages, and I'm in so many groups of parents whose kids are really struggling. And they're sharing resources in this therapeutic school and this psychiatrist and this and everyone is scrambling to do things, because I think it can feel really helpless for a parent to just say, We're gonna stop everything for now. I'm just imagining their parents listening to this conversation and thinking, Oh, is this what's really going on with my kid? How can a parent go about trying to really distill if this is autistic burnout versus a mood disorder versus a tricky puberty experience for an neurodivergent kid? Are there clues to help us have a better understanding?

Kristy Forbes 19:56

I think experience and observation and I know it can be so confusing. And this is something I engage with parents all of the time, the confusion around what something looks like, and where's the fine line between stepping back, and then getting our children out of their comfort zone a little. I think it's so, so challenging. I also want to mention the fact that not everybody has the privilege of being able to allow that rest either. And that is so challenging. There are families who are not in a position of being able to come home from work and be with their children. That's really, really tough. And I think when we offer family support, if we're not offering support to people of all walks of life, then we're not really supporting people. Because burnout extends to parents as well. When our children are struggling, we are in survival mode as well. And often when our children start to recover, then we hit rock bottom, because we've been in survival mode, and then we get to start processing and we hit burnout. But I think for me, I always say to parents, let's think about what we've tried so far, and what the response was or the outcome. What would happen if we tried those things again? What would you like to try that you haven't already tried? What do you think that might look like? And most of the time, parents will say, I've tried everything, I've tried everything, and my child won't come out of their room, or my child is asleep all day and awake all night gaming. And this is a really important thing, too. A lot of people will think, Well, my child's just putting it over me, because they're gaming, they're sitting around all day, and they're gaming, and they're eating, and they're not leaving the house. And they're not doing chores, that still burnout. And the gaming factor is really important to take into consideration because that is very grounding, for somebody in burnout to be focused on a device, because it allows us to feel a sense of control over at least some element of our lives. So many times it can actually be healthy for somebody to be focused on something like that. So I think it's so hard, but trial and error and experience, experience. And so many people will go to professionals and say, look, we've tried this, and we've tried that, and professionals and there are wonderful professionals. And then there are also because we're human, right? And we can be limited in our training and what we understand. Many professionals will say to parents, you need to be firmer, or are no, they're just, you know, they're manipulating you. Or yeah, I know you've tried that before, but we need to try it again. Or they'll focus on, it's not okay for them to not be getting exercise. But if you're powerless over what's happening, you're powerless over what's happening. Other people's opinions or advice doesn't change burnout. It just doesn't. I always go back to my baseline and that is intuition. And experience, you are the expert on your child. And if this is not your child that you're seeing in front of you, and you can see that they are exhausted or burnt out, then that is what is happening.

Debbie Reber 23:43

Yeah, as you're talking, I'm thinking about the fact that nobody wants to feel this way. I think parents get frustrated, right? As you said, they're in the room, they're gaming, they're doing this, they seem not to care, they are not showing up for themselves. And we're offering this and we're trying to do that for them. And so just that reminder that similar to PDA, it's not a wone, it's a can't, and nobody wants to feel this way, including our kids, if this is what they're experiencing. And I also just want to touch upon gaming. I'm so glad that you brought that up, because I think that is obviously a trigger for a lot of parents. It sparks fear. My kid's just gonna spend the rest of their life downstairs on the Nintendo. But hearing that that is actually part of this restaurant can be for our kids. Can you talk a little bit more about what deep rest might look like for children and young people?

Kristy Forbes 24:42

To touch back on that element around gaming and using devices, sometimes that's the only way we can remain connected to our peers and that world that we want to be a part of. And I think sometimes we easily overlook the fact that every thing we ask of autistic people, or autistic children, connection with peers, learning, engaging with interests and hobbies, development of self, all of those things we often access on screens. And it allows us processing time, it allows us to consider social dynamics and learning how to navigate things like that. So when we limit or restrict screens during burnout, we risk isolating our children further. And that's not to blame or shame people either. But I think we really need to take a different approach to understanding the value of technology for young autistic people. And I know, I know, I've been that parent that is like, Oh, my Lord, my child is going to be 64 living in the basement, playing World of Warcraft. And a lot of autistic adults make a heck of a lot of money off doing. Just want to throw that out there. But yeah, deep rest looks different for everybody. But I will say, for teens and young people, it can be being immersed in technology, laying in bed, if you have a PDA profile, it's going to require radical acceptance, and stepping back and having faith. And the tricky part about that is that it can take months, sometimes years for someone to be immersed in deep breaths, depending on how long they've been exposed to whatever has pushed them into burnout. I think rest looks very different for neurodivergent people that may not be sleeping, but it also may be sleeping. Sometimes our children get into a pattern of sleeping all day and being awake all night. This is because it's safe. So the baseline is safety, deep rest revolves around what feels safe for the autistic brain. So if we're sleeping all day, that means we're avoiding the demands that come with being around people, places and things. So being awake all night allows a sense of safety. Now, not necessarily saying that it's healthy, or that it's what we want or that it's ideal, but it is what it is. And going back to the PDA profile, if we put any kind of pressure around that we prolong that state of being for our children, if we go into their room and say, I wonder if you might hop up and come for a walk today. That's pressure. There's such a sensitive reception, or perception of demands in burnout, and that's for all autistic people. So when autistic people are in burnout, they are extremely demand avoidant. It's not conscious, it is that hypersensitive neuroception. So it means that threat response is constantly scanning, because it is deeply protective and wise, and recognizes the need for deep rest. So gaming, being in their room with their door shut, shutting themselves off from the world. I'm not a medical professional. But it is definitely worth mentioning. That by engaging with a medical professional around whether there can be some medical intervention such as medication for some families, can be something to look at. Also nutraceuticals you know, looking at vitamins, because we know when our kids hit puberty, especially when they're neurodivergent. There's a research body that consistently shows that we start to lacking vitamin D, vitamin C, zinc. So looking at basic things, getting bloods done, and making sure that our vitamin levels are where they should be. Just things like that as well are really, really important.

Debbie Reber 29:21

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Debbie Reber 30:03

One of the things you mentioned that I just want to touch upon because this was a question I get a lot is how long you said it could be months, it could be years. And that it really does depend on how long they were in that environment that kind of pushed them over the edge. So knowing that, if our child is in autistic burnout, we want to reduce demands, and we really want to give them the space and support to rest in the way that they need to, how do we know when they're coming out of it? And how do we know when an invitation to go for a walk or to join us for this show, or whatever is appropriate? What does coming out of burnout look like?

Kristy Forbes 30:43

Seeing that spark that we recognize small steps at a time. So in my own family, you know, having a teen who spent three years in their room on their device, that was one of the most challenging things I've ever gone through as a parent. But for me, it was about completely backing off. And that was hard, because it flies in the face of all the information and books and media and advice that you're going to get from professionals. Working with trauma informed therapists for ourselves as parents who are versed in autistic burnout is incredibly helpful. Even better, if they're autistic themselves. I had no idea how long it was going to take. But I knew it had been a long time already. What started to happen was I dropped limits on screens, I would take food to them, instead of saying foods out here. So all the things that we know to try with demand avoidant people, I even dropped that I just took the food to them, I just would text I love You Hope you're doing okay. And then over time, and this, this was a result of trauma related to school and school avoidance. So over time, what started to happen was they would come out of their room with their device and be around us for five minutes, not necessarily engage, and then go back to their room. That is incredible. I just want to put that out there, the fact that they would come out of their room and be around us for five minutes is incredible. And then that progressed because this is dependent on our response to that engagement too. So we would not make a big deal out of it. We wouldn't be like, Oh, you're out of your cave, because I did start out by doing that. And then it kind of grew, then it was coming out and staying for longer and talking to us. And going back to their room. Then it was watching a movie with their device and going back to their room. And now it's coming out and watching a movie without the device. So small steps, but really, really valuing whatever those small steps look like. If it's sticking their head out the door and saying, Mom, can you make me some food? Conventionally people would say, oh, that's, gosh, you're enabling them. What about their independence? But when a child is in burnout, they're unwell. So we move into the carer role. And if they're yelling out, Mom, can you give me some food they're eating, and they're engaging. So paying attention to all of the things and our response to that being very low key. Yep, no problem. And very low demand. So not fussing too much around. What would you like me to make sure to make you some pancakes because we get really excited. So what we hear is for every month that a young person was exposed to whatever may have put them into burnout, it could be a year of recovery. I don't really rely on that. Because I think it depends on every family and every child. But definitely paying attention to the small steps and not jumping ahead and going. Okay, we went for a walk today. Let's do that every day. Let's go for a walk every day. I know you can do it. I saw you do it last week. Why can't you do it now? Because capacity fluctuates. It's not linear. It's up and down. And that's really important to recognize. Also knowing that when we come out of burnout, expect that there will be stages where we will go back into burnout if we're not careful about how we manage that energy. And that engagement with academia socialization, all those things.

Debbie Reber 34:55

Wow, okay, this is just such a wonderful conversation. I'm so grateful that we're gonna get to share this with the tilt listeners, because I just think this is going to resonate with so many people. And it just keeps reinforcing for me how programmed we are, right? Learned helplessness. If I do this, this is the message for my kid. And there's so many societal pressures. And so to really achieve that radical acceptance is not an easy ask for most parents. I mean, it requires a lot of work. And I mean, you talked about having your own therapist, but I just imagined that piece is the biggest pain point for all of this, because it triggers everything in us.

Kristy Forbes 35:42

This is so it. I mean, when I work with families, I don't even meet the children. I never meet the children, we barely even talk about the children, it starts out like that. But this is about us. And that's not in a judgy blamey way, this is about on a deeper level, recognizing what is unseen, unheard unknown within us, because this is confronting, it's isolating. For parents, sometimes we lose people, because of their judgment and criticism and misunderstanding. This is extremely confronting for so many people. And that loyalty that we have with our children can be really tested. Because we have this whole other world that we're a part of, with that messaging. And that shaming, the shame that parents are exposed to, when they can't get their children to insert the thing here, you know, like, go to school, or eat healthily, or exercise, or be immersed with peers, or whatever it is, remembering our children are autistic, they're identified autistic for a reason. If they didn't meet a criteria, then they wouldn't be recognized as autistic. And what that means is, then you're a divergent. And what that means is they diverge from typical neurobiology. And what that means is their needs diverge, the way they show up in the world diverges. And the thing that pushes us into burnout the most is that we are still treated as though we are not autistic. We assess and diagnose and identify people as autistic. And then we send them out into the world as though that never happened. And this starts in childhood, we pop them back into a classroom. And our approaches are always about, okay, let's implement these supports or accommodations until they behave like they're not autistic, or until they are completely independent. And that's a whole other topic to the idea of independence in our children, wanting them to be independent, so early on in life and being shamed when they are not. These are different people, autistic people need a completely different lifestyle. And those families who go through the trauma of being impacted by society's judgments and criticisms, because they have to do this deep work around unpacking, unraveling, facing that conditioning that we have. I see so many of them come out the other side, and thrive in these incredible ways, and then go on to mentor families that are new to the process. And those families, they're in crisis. They're at rock bottom, they've done everything they know to do. And they've been everywhere that they can think to go to ask for help. And it's the families that have been there before that offer the most value. And I can't say this enough. And it's sad that we have to abandon most of our, I suppose, familiar approaches, but also it's beautiful and wonderful. This is another point to the idea that self care can isolate people. Community is what these families need. They need community with people who will welcome them with open arms and tell them this is so hard and you aren't doing so well. Just the value of another person saying I know. I know. I know. Because these families don't get that.

Debbie Reber 39:46

Yeah, there's something you said that just really struck me. Of course, I'm taking so many notes but just that reminder that I think so many parents get the diagnosis for their kids. There on board, right in this neuro diversity affirming approach to parenthood, but there's still a part of them for many of them who are like, and I have a relationship with this kid. And we can progress in this way. Like I think it's just kind of a continual. It's not letting go about continual acceptance, I guess it's moving back to that radical acceptance. But it isn't an S switch. It is an easy journey. But just that reminder that our kids, if they have this diagnosis, that's who they are. And we need to keep that in mind at all times.

Kristy Forbes 40:36

Yes, I, you know, it struck me yesterday, I forget. Because I'm so immersed in autistic culture and identity in a way that is affirming and allows people to thrive and show up in the world in radically accepting and beautiful ways. And yesterday, I did an interview with a clinical psychologist who specializes in youth and mental health, and I was interviewed for a school channel, but they have and I was asked by the cameraman off camera, he said, Do you mind if I ask you a question? This is really fascinating. And he said, How do I know if it's just the way I am and just who I am, or if I'm autistic. And I said, I don't think there's a difference. I mean, I'm just who I am and the way I am. And I'm autistic. Because we're still looking at the disorder narrative, right, we're still looking at, I use identity first language because I am autistic. I am an autistic being. I'm not a person with autism, because I'm not a typical person with a side of autism that can be treated, or cured, or hidden away. I am completely autistic, it influences everything about me, my sleep, the foods, I choose the way I process information, the way I smell, see, hear taste, feel, the way I relate to myself and others and the world. It is an autistic neurobiology. It's not a disorder, a disability absolutely for many people, but also that we want to neutralize the word autistic, we're not superheroes, it's not a superpower. It's not a disorder, it's just a different way of being. And what does create the disorder are the expectations for us to be anything other than autistic. Imagine if these families started out this journey immersed in autistic culture, the outcomes would be completely different. There would be this radical understanding that our, I don't have an orange here, I have an apple. Instead of you know, I use that analogy. When I think about the 33 years of my life, I spent trying to be a better Apple, when the whole time I was a whole incomplete orange, a perfectly normal, complete, Orange. So this is our normal being autistic is our normal, and we're never not going to be autistic. That causes burnout, that masking causes burnout above anything else. The identity part of things, immersing our autistic kids with autistic culture, their autistic peers, is so important. It normalizes their experience. And that creates a healthy sense of self. And that's a great beginning.

Debbie Reber 43:51

So I appreciate everything that you just shared. Very powerful. As a way to wrap up. One of the questions I have gotten about autistic burnout is how do we help people better understand this? That's a whole other conversation? How do we help teachers and well meaning family members and therapists, but do you have any favorite resources on autistic burnout that we could share with people to help them understand what's going on?

Kristy Forbes 44:19

The autistic community in general, creates resources and information on burnout all of the time. Kieren Rose is a great resource around autistic masking and how it leads to burnout. treating it as an illness, treating it as a condition because that's what it is. It's a complete physiological, it's a neuro physiological condition that we move in and out of, and it is utter exhaustion. It's not just fatigue. It's a whole body shut down. You could Google autistic burnout, but I would always recommend that your reading be informed by autistic experience, people who have been there many times.

Debbie Reber 45:06

Thank you for that, would you share with us where people can connect with you and about the ways in which listeners could work with you and be a part of your community?

Kristy Forbes 45:17

Yes, so you can find me at www dot kristyforbes.com.au. I run some core programs, six week programs for families raising autistic children. There's one for families raising children with a PDA profile. And I have a new program I just rolled out called critical care and recovery. And that's for children in burnout. It's for families whose children are in burnout. It's also a six week program with a coaching component as an optional feature. We also have a private closed membership. For families who are raising autistic children. It's beautiful, it's one of those spaces I talk about where families have gone through it all and we have mentors in there who are all autistic raising autistic children. So my passion is supporting families to better understand the autistic experience. But when I say supporting families, I mean, affording that compassion and empathy to parents. So we offer safe, gentle spaces that don't get caught up in terminology and shame and blame. We want a soft place for families to land.

Debbie Reber 46:33

That's wonderful. And such wonderful resources. And I'm really excited to hear about the newer six week Critical Care Program. And listeners, of course, I will have links to all of these resources on the show notes page as well as you guys if you haven't listened to my first interview with Christy, we talked a lot about PDA in that one. And the world of PDA even since then, in three years, I feel like it has really opened up especially here in the US, there's a growing awareness. So definitely go back and listen to that episode as well. And I just want to say thank you for your generosity for getting up super early in Melbourne to have this conversation with me and to just so thoughtfully guide us through this experience. This is so helpful, and I'm just really grateful.

Kristy Forbes 47:21

Thank you for I'm always just so grateful and want to acknowledge and recognize the fact that you are seeking out autistic experience. And that means so much to the Autistic community to be heard amongst other communities, which you know, we are the same community, really. So, thank you so much for inviting me to be back on again.

Debbie Reber 47:48

You've been listening to the Tilt Parenting podcast. To go deeper into this episode, visit the extensive show notes page. For every episode, there's a dedicated page on my website with links to all the resources mentioned, a full transcript and a podcast player with key takeaways marked so you can easily go back and re-listen to the sections you're most interested in. Just go to tiltparenting.com/podcast and select this episode. The Tilt Parenting podcast is hosted by me, Debbie Reber, author of the book differently wired and the founder of Tilt Parenting. This episode was edited by Andrea Curtis-Amezquita and show notes were put together by myself, Andrea and Lindsay McFadden. If you get a lot out of this podcast and want to help cover the costs of its production, please consider joining my Patreon campaign. On Patreon you can sign up to make a small monthly contribution as little as $2 a month and it's super easy to sign up. Just go to patreon.com/~parenting To learn more, or click on the Patreon link on any show notes page. To follow Tilt Parenting on social media go to @tiltparenting on Instagram and Twitter and on Facebook. Lastly, please help this podcast stay visible and easily found by the listeners who need it by subscribing and leaving a rating or review on Apple podcasts or wherever you listen to podcasts. Thank you so much. And that's all for this week. Stay safe, stay well and take good care. And for more information about this podcast or any of the resources that Tilt offers, visit tiltparenting.com

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Episode 317: Neurodivergent Support Specialist Kristy Forbes on Autistic Burnout

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Kristy Forbes (InTune Pathways) explains what autistic burnout is, how it presents in children, and why recovery is based on "deep rest."

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See Andy from Spectrum Gaming's example - https://sgandy.carrd.co/ and https://andysg.carrd.co/

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Supporting Children through Autistic Burnout (Parent/Carer Guide)

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If your child is going through Autistic Burnout, they will need your support. They will need understanding, an increase in sensory regulation time and a decrease in demands (family and school).

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Viv Dawes Autistic Advocate, lived experience support and resources for autistic burnout and other autism and ND issues. Online and face to face training sessions. Autistic burnout workbook to download and online consultations available to book

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Double Empathy Problem De-Brief Repair Sheet template

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In this dazzling debut, Carla Shalaby, a former elementary school teacher, explores the everyday lives of four young "troublemakers," challenging the ways we identify and understand so-called problem children. Time and again, we make seemingly endless efforts to moderate, punish, and even medicate our children, when we should instead be concerned with transforming the very nature of our institutions, systems, and structures, large and small. Through delicately crafted portraits of these memorable children-Zora, Lucas, Sean, and Marcus- Troublemakers allows us to see school through the eyes of those who know firsthand what it means to be labeled a problem.

From Zora's proud individuality to Marcus's open willfulness, from Sean's struggle with authority to Lucas's tenacious imagination, comes profound insight-for educators and parents alike-into how schools engender, exclude, and then try to erase trouble, right along with the young people accused of making it. And although the harsh disciplining of adolescent behavior has been called out as part of a school-to-prison pipeline, the children we meet in these pages demonstrate how a child's path to excessive punishment and exclusion in fact begins at a much younger age.

Shalaby's empathetic, discerning, and elegant prose gives us a deeply textured look at what noncompliance signals about the environments we require students to adapt to in our schools. Both urgent and timely, this paradigm-shifting book challenges our typical expectations for young children and with principled affection reveals how these demands-despite good intentions-work to undermine the pursuit of a free and just society.

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In this dazzling debut, Carla Shalaby, a former elementary school teacher, explores the everyday lives of four young "troublemakers," challenging the ways we identify and understand so-called problem children. Time and again, we make seemingly endless efforts to moderate, punish, and even medicate our children, when we should instead be concerned with transforming the very nature of our institutions, systems, and structures, large and small.

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Supported Loving sexuality and gender identity 

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Supported Loving sexuality and gender identity 

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Supported Loving toolkit

Read more resources
Click here
This is why it is so important to actively encourage people to explore their identity. Find out who they are and find ways to express this. We all have a role to play in this!

Everyone is different and unique. Identity means who we are, how we feel, and how the world sees us. Our vision is a future where everyone's sexual identity, and personal and sexual relationships are recognised, accepted, and respected. Everyone has the right to information about gender and sexuality, and to get good support to express themselves.

People with a disability, including people with a learning disability and autistic people, express a range of sexual orientations and gender identities including, but not limited to, those who identify as lesbian, gay, bisexual and transgender (LGBTQ+). Sexual identities are more varied among autistic people than in the general population ( Warrier et al. 2020.) This intersectionality can result in 'double discrimination,' with a person's sexual rights denied because of their disability, as well as their sexual orientation or gender identity. Research has found that many LGBTQ+ people with a disability face discrimination and abuse because of their sexuality or gender, including from those paid to support them. This can impact on their decision of whether to disclose their sexuality to paid staff ( School for Social Care Research, 2017.) Some LGBTQ+ people with a learning disability are bullied or harassed. In addition, their family members or service staff might not acknowledge their identities or relationships ( LGBTQ HIP and Lewis, 2015; Harflett & Turner, 2016.) Evidence suggests some LGBTQ+ people with a learning disability have concealed their sexuality to avoid expected negativity ( Rushbrooke et al. 2014.)

LGBTQ+ people with learning disabilities experience additional discrimination from the broader LGBTQ+ community who are not always welcoming, with some members holding negative stereotypes ( Stauffer-Kruse, 2007.) Despite the issues experienced, many LGBTQ+ people with a learning disability can feel proud of their identity, but some may need additional support to achieve this through having a safe space to explore their identity with their peers ( Tallentire et al., 2016.)

This is why it is so important to actively encourage people to explore their identity, find out who they are, and to find ways to express this. We all have a role to play in this!

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Supported Loving toolkit Read more resources Click here This is why it is so important to actively encourage people to explore their identity. Find out who they are and find ways to express this. We all have a role to play in this! Everyone is different and unique.

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My Shadow is Purple : Stuart, Scott: Amazon.co.uk: Books

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My Dad has a shadow that's blue as a berry, and my Mum's is as pink as a blossoming cherry. There's only those choices, a 2 or a 1. But mine is quite different, it's both and it's none. A heartwarming and inspiring book about being true to yourself, by best-selling children's book creator Scott S...

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Sexual rights are human rights related to sexuality. These rights are often an under-acknowledged area of sexuality and relationship support, but are very important.

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In this article I will discuss how to recognise and understand Autistic Burnout in children and adults as an Autistic person, professional, parent or carer.
I've struggled massively with writing this.

It's ironic really.

It's taken me six weeks to start writing an article about Autistic Burnout, because I'm going through Autistic Burnout...

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.

If you're a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you're lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you're an Autistic person, nobody will have told you about it either, unless you've engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we're born to the day we die, yet nobody, apart from Autistic people really seem to know about it...

I had some parents come to see me:

It was just a chat, their little boy was struggling in school and and they were looking for some advice in how to deal with the school. Somehow we got onto talking about my experiences at school and onto my suicide attempt at fourteen, which I describe in graphic detail in How to hide your Autism and An Autistic Education. My story was horrifying enough to them I imagine, but I think what horrified them most, was what had led me to that point in the first place. They'd never heard of Autistic Burnout.

When I described to them what it was, they actually recognised a recent episode where it had occurred with their son and the more they looked back at his life, the more they started to recognise the pattern; they started to see how life for an Autistic person is really a series of peaks and troughs. They now see how frequently he has been through it and how they've pushed him to keep going through it, unwittingly, when he had no way of communicating what was happening to him.

So, what is Autistic Burnout?

Firstly, you may have heard of something called Autistic regression. Autistic regression, which in itself is a horrible name and a terrible descriptor, is often described around the time a child is diagnosed, or as the reason to seek diagnosis.

A parent may describe the child as losing some or all of their verbal communication ability, for any person of any age they may appear more 'typically Autistic'. As a child, milestones they had passed - walking, toileting, verbally communicating, may revert back to a pre-milestone position. The name Autistic Regression is completely wrong though, as what it does not take into account that it can be and is often temporary, it is part of the ebb and flow of Autistic life, caused by the impact of society and the environment the person lives in, it is NOT a permanent return to a former or less developed state, as many would have you believe.
(This blog is available to buy as an ebook! CLICK HERE for more information)

There are, in my opinion two distinct types of Autistic Burnout that feed into each other.

The first is often termed Social Burnout. This is a frequent occurrence, where just your day, just living, talking to people, being assaulted by senses, exhausts you to the point where you can only collapse in a heap at the end of the day, or at the end of the week, depending on your constitution (remember this won't be identical for everyone, but it certainly will be similar). This happens at any age, from a baby up until old age.
The bell rings for the end of the school day, the children are filing out of school, so I duck out into the woods and light a cigarette. I need the noise muted and filtered; the wind does that, carrying the hubbub of the end of day away from me - I'm an expert at this by now, staying downwind of noise. My whole body is tired, lead boots weighing me down, my brain slowed distinctly, reactions are slack. A day of talking and socialising - Conversations with adults and children, timetabled and spontaneous. Running the conversational scripts in my head to full capacity all day long Surrounded by noise; screaming children in the playground, shouting children, singing children, musical instruments, banging and clashing, the general commotion of the classroom; and over the top, the dumpf - dumpf - dumpf of my heart in my ears and in my chest. The strip lights overhead, flickering constantly in pulsing waves, each one shooting through my eyes and down through my body; I can physically feel each pulse humming and vibrating. A vast array of colours and patterns on the brightly coloured walls, covered with brightly coloured work. The sun glaring through forty year old, grimy windows, diffracted around the room, while a billion dust particles dance captivatingly, confusing my already overwhelmed eyes.
And over the top of it?

Masking.
Suppressing my reaction to all of this, the urge to scream and scream and scream till I explode - wanting it all to go away. My face is still, good eye contact made, no matter how much it hurts, being touched constantly, leaving my skin feeling like it has been repeatedly pressed by a molten hot branding iron. It's not over yet though. Three quarters of an hour of tidying and prep for the next day and it's time to leave. I get a lift with a colleague as the buses are so infrequent, so I have to maintain conversation. My colleague is lovely though and can generally sense somehow when I can't speak, a ten minute car journey often passes in a vaguely comfortable silence. It's sometimes like a tiny piece of decompression time before i get home. When I get home there's nobody there. Sometimes turning the key in the lock is the hardest thing to do, it's so heavy. The weight of the bag on my back pulling down. My lead boots heavier and heavier. I get through the door and drop my bag. I crawl and stumble up the stairs and make it to the bedroom, collapsing on the bed without even the energy to remove my shoes, my eyes are heavy, exhaustion pulling my lids shut. Several hours later when Michelle comes home, she finds me and wakes me, I have enough energy to make it through the evening, just. My conversation is muted though, like when someone asks a child what they did at school and they reply with "Nothing". I want to respond, I want to engage, but I have neither the ability or the energy. I'm 26 and I've been doing this for as long as I can remember, practically every day the same. The days when i can't do it, when I can't collapse in a heap, the worse it is the following day...

3 years diagnosed and I have no idea what is going on, this is my normal.
Can you imagine this, day in and day out - this is just everyday life and this was pre-me having children. I've got three children now and they are the light of my life, but how they have impacted on me having the ability to recover day after day is immense. I could no longer collapse - I didn't have the capacity.

The responsibility of having one, then two, then three children led me to have to Mask and suppress even more, fight through and resist the extreme, overwhelming shutdown my brain and body wanted to go into.

This has become a sick joke to me. When people message me and ask me how I am, my response is:

Autistic Burnout is exactly that; The shutting down of mind and body.

If you've ever had a problem with a computer and it's had to go into safe mode - that would describe what happens to the brain - it runs on limited function, not all services are available - it's access to the Internet (my Rolodex, as I described in The inside of Autism: The world inside my head) denied and unable to connect. No little white bars to indicate how strong or weak the signal is, because it's just not there.

Physically I often imagine it as the need for hibernation, where the body effectively stops all but the most important functions, the heart rate slowed, breathing distributed evenly and slowly, hovering on the precipice between sleep and death.

Except, through this all, you are awake and expected to function, expected to get on and live your life, so you repeatedly go back and do the same things over and over again, put yourself through the exact same scenarios that caused you to feel like this in the first place, rinse and repeat.

Another aspect of this is that Autistic people, for some reason, possibly related to Masking and wanting to fit in, are incredibly eager to please. Part of that eagerness, especially for those who don't fully fill the Pathological Demand Avoidance profile, is often an inability to say "No" to people. So we take more and more on, we allow our plates to get fuller and fuller, our anxiety heightens, our sensory processing becomes more difficult to maintain, our Executive Functioning abilities spin out of control and again this attributes to burnout. We aren't generally terrific at juggling plates.
"There is an actual concrete reason that we tend to be taken advantage of and it starts with the difference in communication between autistic people and neurotypical people. Autistic communication is generally on one level. We are honest, up front and do not often do things like manipulation and deceit. We generally do not lie although many autistic people are capable of lying if they feel the need but usually it doesn't come naturally.
Neurotypical people (or 'allistics' if you prefer) operate differently in how they communicate. Their communication tends to happen on more than one level... It can be seen as the difference between visible light and infrared light. If you can only see visible light then it is hard to imagine what infrared looks like, even if you are aware it exists."
Jeanette Purkis, who is an Australian Autistic, an absolutely wonderful writer and a Member of my network organisation, The Autistic Cooperative, has written an excellent piece called "'Too Nice': Avoiding the traps of exploitation and manipulation."

In it Jeanette says:

These differences are not visible to an unaware or undiagnosed Autistic person, so it leads not only to the full plate, but offers up the Autistic person to all levels of potential abuse and manipulation through compliance. I could talk right now about Behavioural Therapies such as Applied Behavioural Analysis (ABA) or Positive Support (PBS) and how they take advantage of the Autistic being eager to please and open to manipulation, but I'll save that for another day.

I mentioned in An Autistic Education, about the fallacy of parents repeatedly sending their children into school, making the same mistake over and over again, watching their child crumble before their eyes, yet unable to break the cycle even though they can see what is happening to them.

You HAVE to go to work, as much as you HAVE to go to school.

Society demands it.

Society demands compliance.

Autistic people are doing the very same thing. We repeat processes constantly which wear us down mentally and physically constantly, each day, without a break. Some undiagnosed people unwittingly develop strategies to cope with this, the Mask again, rearing it's head, but it all catches up eventually...

And all because we're made to think that we have to.

This is what people do...

Society demands it.

Society demands compliance.

As I mentioned earlier - burnout covers all age groups. Autistic babies suffer Social Burnout as much as children or adults. Babies who do not wish to be touched, babies who are forced into eye contact, babies who are picked up and manhandled, babies who have even less of a filter than Autistic children or adults, to block out the overwhelming sensory sensations they are put through.

So, if this is the every day normal for an Autistic person, to one degree or another, from birth to death, what happens after an extended period of doing this?

***

The second type of Autistic Burnout.

You crash and you keep crashing.

If you imagine everything that I have described above, the shutting down of mind and body, but imagine it occurring over a period of weeks, or months or even sometimes years.

This is extreme Autistic Burnout. It's usually the result of the day to day overwhelm combined with an event or trauma, or typically the weight of life building to a point where the Autistic person has to cease to function.

When I was fourteen, my Autistic Burnout was triggered by a combination of things. I'd reached the end of my tether with school - i just couldn't hack it any more, couldn't hold in the pain it was causing me any more, I was in a constant state of sensory overwhelm, I was isolated, confused and didn't know what was happening.

My Grandfather had recently died too - which was a massively life-changing event for me.

I've mentioned that touch burns me?

Well at that point, the only person on the planet that I knew about, that could touch me without it hurting, was him. Albert Ferguson was the kindest cuddliest man i have ever known, I remember my eldest sister (who is also Autistic) and I were forever clambering over him, rubbing his shiny bald head, breathing in the smell of his tobacco and 'two fingers' of single malt whiskey. I'd lay there silent in his lap for hours while he'd regale me with regimental details, battalion names and numbers from his time in Burma during World War II and days later he'd test me on them, delighted when I remembered them correctly.

When he died he left a huge gaping cavity in my heart and my mind.

One of the worst parts was that he was hospitalised for a long time before he died, months and I was not allowed to see him. I was desperately sad that he'd gone, but I also incredibly aware that now I had nobody to touch or be touched by. I resigned myself to a life of pain at that point, could not conceive that I would ever find anyone else that wouldn't physically hurt me.

So this combination, along with the overwhelming confusion of what was 'wrong' with me, why I couldn't really connect with anyone, why people singled me out or played tricks or used me, of what the hell was wrong with me and why i just kept hitting this wall over and over again, was what led me to crash and burn out - my physical body and mind started shutting down. I could feel each system in my body closing off as gravity got heavier than it had ever been. I didn't know what to do - did not understand what was happening to me - I had no way to communicate this.

It was like a switch had gone off, my verbal ability to convey what was going on in my mind and body was gone.

I did not want to die, I've never wanted to die.

I needed to step out.

I needed to remove myself from the environment and take myself elsewhere; I needed to escape.

But the only way I knew how to do that was to die. So I tried.

What I was feeling though was not depression, I know that now.

Some researchers are starting to listen to Autistic people and are starting to recognise that clinically, Autistic Burnout shares a similar presentation to Depression, but is a completely separate thing. As this study shows, they are seeing how Masking, or Social Camouflaging has a distinctive lead-in to the high suicide rate and also into other mental health issues that are identified, sometimes wrongly in Autistics and, as this study shows, how a lack of Autism Acceptance plays a huge part in that too

The lack of distinction between Autistic Burnout and Depression; In fact the lack of recognition of Autistic Burnout at all, outside of the Autistic Community, has caused many problems for Autistic people. Many who have been identified as depressed have been and still are being put in psychiatric units, psychiatric care, drugged and then have developed Mental Health issues off of the back of this - when really what they needed was major sensory withdrawal/stimulation (depending on the person), acceptance, understanding and rest.

I'd been taken multiple times to the GP by my Mum and had been from the age of twelve on various types of antidepressants, which looking back, is actually quite horrific, but probably indicative of a time where so little publicly and medically was known about mental health, let alone Autism.

I cannot emphasise enough how important it is to make the distinction: that Autistic Burnout is a separate thing from Depression and how important it is, that it starts being recognised and addressed in Society.

None of this is meant to imply that an Autistic person cannot be depressed - that is not the case at all.

Along with the things that cause anybody to be depressed, prolonged burnout can definitely lead to a depressive state, as indeed can, as the study above shows, a lack of Acceptance -it is hard for that negativity to not be absorbed, especially by people who are emotional sponges and highly reflective of the emotional state of people around them.

This is also definitely not to say that a suicide attempt comes along as part of the package of Autistic Burnout, because it doesn't always. I've had periods of intense burnout where i haven't taken that measure. It is however indecently common amongst teenage Autistics diagnosed or undiagnosed; and those who are diagnosed later in life.

Recent studies show that prevalence of Suicide attempts amongst Autistic people stands at 35% of the population, with suicidal idealisation at 66%, with separate studies indicating that approximately 10% of all suicides are by Autistic people - bearing in mind we make up 1% of the population, supposedly. I would hazard that that rate is exponentially higher in reality.
I've left my job. Well, my job has left me. I was happy there once, for a long time. Then the rumbles of change started, people losing their jobs, major restructure. My performance dips, i grow tardy and try to cover it up. It's halfheartedly noticed and commented on, which just makes my anxiety worse, everyone really is too worried about their own jobs though. I spend day after day not doing anything, other than pretending to work, because I'm not coping. My life is spiralling out of control and all I can think about is the look of horror on my Wife's face when I tell her I'm jobless. The lack of communication, the vague realisation that the people you work with, the people who have actually helped make life feel sort of good over the last few years are my competition now. All of a sudden it seems like everyone is Autistic, nobody makes any eye contact with each other. My replacement, from elsewhere, sits opposite me, I'm to train him. I'm offered my job, but a long way away. It feels like the final slap in the face. They know I'm Autistic, they know I have Meniere's disease and can't go that far on the bus - what'll be a two hour journey every morning and night. I walk out. I ride the bus home. I go to bed. I don't know what to do. Then the click. The flick of the switch. I feel it deep inside me. I recognise it with abject horror, i remember the feeling. I remember the lack of self control. My mind goes into Safe Mode. What to do? How do I explain this to Michelle. I clutch at my throat and my words are gone. They come back a time later and I'm able to tell her. The horror I imagined was there. But also love, so much love in those deep brown eyes. I was safe in them. The only eyes I've ever been able to look at.
I'll talk a little more about suicidal idealisation later.
I clutched her tight and the Mask dropped off.
I heard it slide to the floor and crack in half.
***

Extreme burnout comes fairly regularly during an Autistic's life and there is a school of thought amongst the Autistic Community, that when Autism first becomes 'apparent' to parents - you know, the old "They were a perfectly normal toddler, then they had their MMR...", between the ages of 2-5, when it becomes noticeable to most parents who don't know what they are looking for and have zero frame of reference, that the child is undergoing Autistic Burnout - their apparent 'Autistic Regression' is because they have had some kind of event - starting nursery, going to school, home life changes, something sensory - it could be anything for each individual child, some major (to them) change that has overwhelmed them to the point that their Mask (which starts establishing itself very early on) has completely dropped off.

The Mask coming off is exactly what happens during the Autistic Burnout period, your Autistic traits become more obvious as your brain goes into Safe Mode. You may become more inflexible, your ability to 'mock' making eye contact may disappear completely, your ability to socialise may be drastically reduced or go completely, you may sleep more, want to be on your own more and bury yourself. Life just gets significantly harder and gravity, as i mentioned before, just pulls you down more and more.

Eyes i can distinguish the patterns in and lose myself in.

The next few months were like wading through treacle, physically, mentally and emotionally, but equally I was wound tight as a spring. My sensory sensitivity was incredibly heightened, I couldn't tolerate noises, smells, too fast movement, anything really.

Doing the simplest of things exhausted me and still at that point i had no real understanding of what was happening to me. I was an Autistic man on anti-depressants for the umpteenth time of my life, completely not depressed, but not knowing how else to explain it.

The truth is, I was relieved not to be at work- it gave me the opportunity to switch off which I needed desperately. Had it not happened I think I may have looked at the suicide option again, it negated the need to step out.

As it was around 9 months later I started to wake up again - my mind and body felt more alert than it had in years.

Michelle and I have talked extensively about that period and the period after and she sees the difference in me. She recognises that I Masked an awful lot with her from the moment we met, despite my attempts not to and doesn't see it as me lying to her, she understands that I was doing what I did to survive and often unconsciously.

My period of burnout saw me unable to function really at all. I was kind of a vaguely absent father - there, but going through the motions, rather than actively engaging.

We struggled financially, I started proceedings for constructive dismissal, but was so crushed and lethargic, and the proceedings were through a Council process which was massively bent in the Council's favour, so we gave up.

I can honestly say that those months were tortuous. We came within a hairs-breadth of losing our home. I expected Michelle to ask me to leave and wouldn't have blamed her if i did. But somehow we came through it and I came out of it.

I came out as someone desperate to know what had happened to me. The pieces were falling into place that there must be a better way than this, there must be reasons for this.

So I turned on line and found Autistic people. I started talking and learning, realising that ideas and narratives that had been floating around in my head actually existed and names - things like Neurodiversity.

I found the Autistic community.

I stumbled into this world; metaphorically, my eyes shielded by my arm from the glare of Autistic gold shining back at me.

I've not looked back since.
The noise of the traffic is too great. The cars are screaming past, one of those motorbikes that sound like giant broken hairdryers is gunning it's engine unnecessarily. The sun is glaring down upon me, the warmth is nice but the light is too bright, too strong and I don't have my sunglasses. A throng of people are walking round, I'm like a rock in a river with the current parting round me, but I'm being buffeted and jostled, my body is burning. Somehow I'm forced to edge of the street, right to the curb. My head is spinning, eyes feel like they're vibrating in my skull, my teeth hurt, everything is building and rising. I look up the road and see a bus coming, no chance of it slowing. I step in front of it. The world falls silent, everything slows. The bus coming towards me in slow motion, blurred with movement, feet away, inches away, the look of realisation dawning on the driver's face as he sees me, contorting into fear and horror. A glance back over my shoulder at the oblivious people, heads down, intent on their journey, not noticing the person about to dissolve into peaceful oblivion. Stepping out. I close my eyes, my arms open wide, embracing the stillness about to come, a world of soothing dark, comforting silence. I can feel the roar of the wind, the roar of the engine comes, the world kicks into normal speed and... I'm back on the pavement, jostled and bustled, ears assaulted with noise as the bus speeds past me.
***

I said earlier I wanted to talk more about Autism and Suicide.

Sadly the two seem to go hand in hand.

But not all suicide amongst Autistic people is directly attributal to Depression, because not all Autistic people are depressed, as I mentioned before.

Earlier I touched upon my experience at fourteen and explained how it was less an attempt to end my life and more being backed into a corner and it being the only way to get away from the situation I found myself in.

Anecdotally, I have talked to a significant number of Autistic people about this (a few hundred) and have found that their experiences matched my own - not only in the 'why' they had attempted suicide, but also in that, like me, they are pretty much constantly thinking about ways they can do it.

I do this all the time and so do so many Autistic people. Stepping into traffic, jumping off of things, taking pills, all manner of things. It ebbs and flows, depending on what your are doing or where you are.

These are not intrusive thoughts, as such. It's almost like they are deviations on a path, where in one world you make the choice to step out and in the other you don't, but you bear witness to both those paths at once, for just a few moments - the intensity of the situation allowing you to witness a shearing of worlds, of universes, where in one you die and in the other you carry on.

We generally don't want to die.

We want to escape.

We want to step out.

The world is an overwhelming place for us - it doesn't have to be, but the way it's set up with colours, noise and lights and people and expectations makes it so.

We lose ourselves in repetitive behaviour, we Hyperfocus, we Stim, we become different characters or act as animals, we script conversations, we withdraw, we hide in worlds inside our heads, we close ourselves off, or equally sometimes explode outwards, we Mask - all in an effort to endure this world we live in, to survive, to find balance with ourselves internally and externally and also, to hide who we we are - to make Non-Autistic people accept us, because we don't find acceptance as ourselves.

This is why we burn out.

***

Sign and Symptoms of Autistic Burnout

The warning signs of Autistic Burnout are actually quite easy to spot if you know what to look for, either from an external point of view, as an observer, or loved one or internally, from an Autistic self's point of view:

A growing lethargy

An increase in irritability

An increase in anxiety

An increase in over-sensitivity to sensory information

A dramatic decrease in sensitivity to sensory information

Heightened Auditory processing disorder

A decrease in verbal language

A decrease in text language

An increase in Shutdowns and heightened withdrawn state

An increase in the frequency and severity of Meltdowns

A diminished ability for the person to self-regulate their emotional state

The slowing down of the thought processes

Brain fog

Memory loss

A decrease in your ability to effectively communicate what you want

A decrease in motivation

An inability to generate momentum of body and of action

An increase of rigidity, narrowing of thinking

A feeling like your vision is tighter or narrower

Extreme forgetfulness

Extreme overwhelm

A massive increase in guilt

An increase in Executive Dysfunction

An increase in Demand Avoidance

(If you think there are more, feel free to add them in the comments and I'll amend.)

Can you see why it's often mistaken for Depression?

Run through that list again and apply each of those thing to, firstly, a child.

Say one in the region of 0-10 years.

How would all of those symptoms present? You got it in one: Bad behaviour, defiance, lack of compliance, willful disobedience, withdrawal, self-harm, depression. Especially, if you consider that any child, across what is a huge age range, is likely unable to be able to express or communicate effectively, if at all, any of those things, or why they feel the way they do, or even how they feel the way they do, especially if they are Autistic.

If you apply it to a teenager, who has a mess of hormones running through them, who is acutely aware of how much they stick out like a sore thumb, whose growing self-awareness, their very sense of self, is being fractured by a combination of everything they are going through in day to day life AND everything on that list; how does it present? Bad behaviour, defiance, lack of compliance, willful disobedience? Or the other way, they withdraw completely, they're described as Moody, as an extreme Teen, they lock themselves away and become more withdrawn, less social, less able to function. Through all that they are likely still able to communicate any of this.

Now apply both those scenarios to someone who is undiagnosed. From the outside looking in, they are behaving 'badly', 'acting out', or they are depressive, or ANGRY, so they are drugged and Therapised, or treated to such delights as PBS or ABA to 'improve' their behaviour', or they're just left to get on with it and kill themselves, or get caught in a cycle of self harm, or get wrapped up in short bursts of highs to make them feel better, as in drugs or criminal behaviour, as they fight against themselves and how they are feeling, or all of those things.

It sounds drastic doesn't it?

Yet it's happening every day.

Mostly because people do not know or understand 'why'. There are a myriad of reasons so many Autistic kids (diagnosed and undiagnosed) are in the young offenders system and then further on, Autistic adults in the Prison system.

***

So what can we do to to ward off Autistic Burnout and what can we do to mitigate it once we're in it?

Firstly acknowledging and accepting that it is a thing and you or your child will go through it - Social Burnout pretty frequently and Extreme Burnout at least a few times in you or their lives.

On a basic level, allowing periods of withdrawal, or decompression time at the end of the day, or even throughout the day can make a big difference. Time where the child can effectively take time to process what has happened throughout the day, shut off external sensory stimulation and basically be inside their own head for a period of time. You may also find that this helps with the level of and freqency of Meltdowns that occur. Especially if you or your child Mask and do the coke bottle thing of bottling up everything all day and exploding at home.

Adult or child you need to proper time to withdraw. So even at Social events or Social Situations having an escape plan ready is vitally important. A reason to leave either completely or temporarily, a quiet space or bolt-hole to enable whoever it is to just have some time away from people.

It's really important to recognise also, that after significantly stimulating or potentially overwhelming events or periods, that the person may need a day or two off of work or school. This may not be realistic, but it is effective. Allowing this decompression time is incredibly important. It allows the Autistic brain and equally the senses, an adjustment period to reestablish whatever the person's brain or body considers normal parameters.

If the person is of school age, then it will definitely depend on your relationship with the school and how frequently they need decompression days, but my philosophy is generally that my child's mental and physical health is more important than a day at school - if they need a decompression day, they take it.

If I need to be fined, then so be it, but I'd love to see someone try.

Work may be a little more difficult but, again, it depends on how good a relationship you have with them. If for some reason you can't take a day, then taking as much free time to yourself as you can, with as minimal mental and sensory stimulation as possible is the best you can do. It won't be enough forever though.

Once you're in burnout, you need to learn to recognise and accept that you are.

There isn't a huge amount you can do beyond throwing away that Mask as soon as possible and taking as much space as you can get with as minimal sensory input as possible. Some people find that doing hands on tasks helps them, others go for long walks, or immerse themselves in books and films.

Sometimes it drags on and on, sometimes you can see it coming and not be able to stop it.

The period I'm in now was triggered by me, if I'm totally honest.

Autism Awareness week in the UK was, this year (2018), incredibly busy for me and so was the week preceding it.

I established a working relationship with the North East Autism Society earlier in the year and they asked if my family could be their campaign - so hours of filming, I blogged everyday, I made videos for the first time, spoke on various radio stations, we featured across several newspapers five or six times over the course of the week, plus I also had a trip down to London for the launch of the Westminster Autism Commission report on harmful interventions, plus had to respond to the hundreds of Tweets, Facebook Comments, messages and emails that were thrown at me.

All in all I threw myself into the whole week.

If you've gotten this far down this article, you can probably imagine by now what I felt like after all that. I have written the majority of this article in one day, for the last six weeks since Autism Awareness Week, I've written nothing, not a word.

As I said at the beginning, the irony being that I wanted this to be about burnout, yet didn't have the strength to write a thing.

***

The biggest thing of all you can do to prevent, or at least mitigate burnout, is to start identifying what you do when you Mask and stop.

Even just little things like eye contact, which so many of us do, or at least pretend to do.

Allow yourself not to be sociable if you don't want to be.

Give yourself permission to duck out of situations you can't cope with instead of pretending you can.

Got something important to do?

Cut out as much of the other crap as possible - give yourself a break, go hole up in a cupboard under a blanket for a few hours, or alternatively, if you are able, go and run or cycle really, really fast (sometimes the wind rush can literally help clear away the cobwebs because so much sensory information is cut out).

A big sensory break every few days, or weeks, coupled with smaller sensory breaks throughout the day could make the world of difference to your life, or the life of your loved one.

The biggest thing of all you can give yourself, or your loved one, is time.

I've experienced Extreme Burnout probably 4 or 5 times in my life. Lesser ones a significant number more and social burnout pretty much daily. The biggest thing that has helped me avoid and mitigate it, is learning about myself and the way I have done that, is by connecting with the Autistic Community.

I have learnt to understand the 'why' of why I react to certain things in certain ways, I've learnt to understand 'how' to best avoid certain situations or to shield myself from them with Masking. I've been supported into learning how to Accept myself and shuck off, to a certain extent what has been thrown at me

Autistic people have the tendency to want to pull people together because of their similarities, not push them apart because of their differences - We are accused of wanting to be solitary, of not wanting to be around people, when we have one of the strongest Communities I have ever witnessed.

The Autistic community is there waiting to be used by Autistic people and their families alike; a font of deep knowledge, a library of cross-referenced and correlated information about Autism, that you will not find coming from an Autism 'Expert' or 'Professional' and you will certainly not find in the DSM 5 or ICD 10/11.

Autistic Burnout is one of those things you will not learn about from Professionals, yet Autistic Burnout leads to death. How horrifying is that?

So please, play your part today and help yourself, or your Autistic loved one to recognise it and take appropriate steps to stop it.

Help save a life.

I'm coming out of my burnout period. I feel like mentally and physically the fog is lifting - I'm starting feel like gravity is slightly less effective as it has been, I'm still exhausted and have been sleeping sometimes 14 hours a night - which is bizarre for the person who has spent his whole life averaging 4-5 hours a night and actually has made me more tired than refreshed I think!

I know it's coming to an end because I'm writing again. It's taken me six weeks of staring at a computer screen and writing nothing. Yesterday I wrote most of this in about three hours. I'm on an upward trajectory again and it feels good. Still not quite there though, my Executive dysfunction is still playing merry hell - I've been tinkering with this now for five days!

Sometimes knowing what you are experiencing makes the experience less frightening and easier to manage, it offers you a level of control over the situation and expecting it will happen does too.

If society changed to accommodate us our lives would be a lot easier, instead though, for the most part we are still expected to change ourselves completely or play catch up - so if there are ways where you can make your life easier - and not damage yourself in the process as with Masking, then i recommend you do them - there is no support for this, except from Autistic people, and if you're lucky enough to have understanding family - so self-care is your priority.

A key thing to remember here, because there are, I know, proponents of a theory that much of what is identified as Autism is actually the descriptor to a response to lifelong trauma and I know that much of what I write here could be seen to be backing up that theory.

As a disclaimer. It could not be further from the truth. Trauma plays a huge part in the the Autistic upbringing and life, but that feeds into Anxiety. Autism is described by Neurology. Our Neurological functions are different from birth, our brains work differently. Trauma does not play a part in shaping our Neurology. Trauma plays a part in shaping our personalities. Autism is Autism.

Autistic Burnout is real. It exists. And it plays a huge part in taking our lives.
The brilliant Ryan Boren: The excellent Judy Endow
Repeated short term burnout is completely unsustainable and has huge long-term implications.

So please, whatever you do, take care of yourself.

Kieran.

***

Some other links about Autistic Burnout:
Buy An Autistic Burnout an as ebook here
The wonderful Amythest Schaber:

Keep in touch with Kieran Rose, The Autistic Advocate

The Autistic Burnout blog is now available as an ebook

The internet is great for reading blogs, but sometimes you just want something you can read on paper!

You can now choose to buy An Autistic Burnout as an ebook; you'll be able to download it to any of your devices and also print it out (so you can make notes and also share it with a friend, teacher, parent etc).

Read more about Autistic Burnout

Where is my mind...? I've been repeatedly playing the song by this name by The Pixies, just as a reminder to ask it the question of myself. This year my Autistic brain has found itself circling losing itself over and over; and it's been little to do with Covid-19. I usually hate falling into clichés...

"Society beats into me how I should be raising my son, but I don't think my way is wrong just because it's different. Still that pressure to seem normal is overwhelming. I'm constantly fighting the urge to Stim or rock or shutdown in public." - Jessica Trigger warning for suicide, self harm, suicidal idealisation, depression...

In this article I will discuss how to recognise and understand Autistic Burnout in children and adults as an Autistic person, professional, parent or carer. I've struggled massively with writing this. It's ironic really. It's taken me six weeks to start writing an article about Autistic Burnout, because I'm going through Autistic Burnout... If you...

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Autistic Burnout - How to Recognise and Understand it

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How to recognise and understand Autistic Burnout in children and adults as an Autistic person, professional, parent or carer.

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What are the most common challenges faced in this area and how best to support people to overcome them?

As with anything to do with sex, people with additional needs (such as autism and/or learning disabilities) often do not have equal access to enjoying pornography. This is often due to the values and feelings of the people who support them. If someone is old enough (18 years old or over) and has the capacity to choose to view pornography, then they have the right to do so if they want to. Pornography should be viewed as a form of adult entertainment, such as category 18+ horror films. You may or may not choose to view and enjoy these films yourself, but your tastes should not restrict other people's choices.

We all deserve to have relationships and sex education that will support us to enjoy our sexual self, but also support us to understand topics like pornography, consent, safer sex, and relationships. Good education helps us to become critical viewers of pornography and understand that it is designed to entertain us, not show us a realistic depiction of what sex and relationships feel like. In the same way you don't watch Fast and Furious films to learn how to drive, pornography will not necessarily teach you how to have consensual, pleasurable sex.

Additionally, use of the internet can be a rights issue, as many who have support needs, find their use of the internet blocked or impeded. Access to online information, services, education, entertainment, friendships and relationships are a right that everyone should be able to enjoy. If the concern is that someone will be at risk due to their online access, then the first course of action should be education and support rather than blocking access. Most people can reasonably expect to be able to enjoy legal pornography privately if they choose to do so. If a person has support needs (such as a learning disability) they may need some extra support to exercise this choice.

If you are supporting someone else to view pornography, then some questions need to be asked:

Are they old enough?

Do they know and understand what pornography is?

Do they know the difference between legal and illegal pornography?

Do they have a private place in which to view it? It should not be viewed where other people who haven't consented to view it can see or hear it eg in the family or residents' lounge, at college or on public transport.

What device are they viewing it on? If it is a shared device, do they have a separate password for their account, do they know how to close tabs or remove their viewing history?

Are they accessing free pornography or paying for pornography? Pornography actors have the right to good working conditions, just like anyone else, and paying for pornography can often mean better working conditions for the actors.

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What are the most common challenges faced in this area and how best to support people to overcome them? As with anything to do with sex, people with additional needs (such as autism and/or learning disabilities) often do not have equal access to enjoying pornography.

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“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout

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“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout

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Publishing with Mary Ann Liebert, Inc. delivers end-to-end benefits from the time of submission through to publication and beyond. We welcome the opportunity to work with you and your institution. Find everything you need to get the most out of Liebert journals in your library and to keep your collection up-to-date.

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What are the most common challenges faced in this area and how best to support people to overcome them?

Regarding masturbation, there are several key areas where individuals with frequently require support:

Masturbation technique - Often initial technique starts from some form of genital stimulation, especially if sensory processing is an issue, which focusses on the groin via rubbing or 'dry humping' the floor, furniture and people. Or inappropriate objects are used eg pens, cutlery or clothing to stimulate the area. In these cases, such technique can result in serious injury. Or there may be issues relating to accessing inappropriate locations, eg garden or lounge. It is important to note that some individuals may have sexual fetishes that require appropriate support to ensure it is safe and legal.

Assisting the individual should include considering any possible sensory difficulties and how to effectively support these. Teaching about masturbation techniques has to be hands off, including hand over hand and guiding a person's hand, but you could use educational materials, including DVDs, models, drawings and pictures. If the individual is over 18, then the use of more graphic material may assist. However, it is important to prevent misunderstandings, so this should be agreed as part of a multi-disciplinary approach, documented and communicated with the person to ensure that no other literal meanings can be reached.

Location of masturbation - A private area, such as a person's bedroom or possibly bathroom/toilet in their own home, are deemed as appropriate locations to masturbate in. However, for some individuals, such boundaries are not necessarily clear. This can lead to masturbation in public areas, including school, college, day centre toilets, which then requires clear guidance and support from staff. Unfortunately, making assumptions regarding someone's understanding about this issue could lead to inadvertent rule-breaking and contact with the criminal justice system. It is important to explore the individual's understanding about public and private areas, including differences between the toilet at home and those at school or in public, and recognising that being on a webcam, eg on Skype in an empty bedroom is not private. Gaining this understanding about the individual's perception of public and private will help in providing prompts for when they need to access appropriate private areas to masturbate in. This work should, even in someone with good verbal skills, utilise visual methods (such as pictures/films) to explore the concepts and provide visual prompts for when the individual needs to relocate to engage in masturbation.

Frequency of masturbation - Generally, frequency of masturbation reduces either due to finishing puberty or successfully reaching climax. Of course, even after this, it is difficult to gauge and measure whether an individual is masturbating excessively because, regardless of their disability, it depends upon them. However, one factor would be if the frequency of their masturbation impacts upon their ability to access the world around them, or if it causes injury to their genital area.

If it is felt that the individual is excessively masturbating, then further investigation is necessary. This should include any medical aspects, such as urinary tract infections, as well as medication side effects. Other aspects to consider are masturbation techniques not being effective and the possibility that masturbation has become an obsession for the individual. Support will have to centre upon the potential cause, but may include putting boundaries in place and providing alternative activities should there be links with boredom, etc.

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What are the most common challenges faced in this area and how best to support people to overcome them? Regarding masturbation, there are several key areas where individuals with frequently require support: Masturbation technique - Often initial technique starts from some form of genital stimulation, especially if sensory processing is an issue, which focusses on the groin via rubbing or 'dry humping' the floor, furniture and people.

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Neuro Pride Interview with Elizabeth on Pregnancy and Neurodivergence - YouTube

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Neuro Pride Interview with Elizabeth on Pregnancy and Neurodivergence

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Supporting pupils through Autistic Burnout (Teacher Guide)

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This article discusses what Autistic Burnout may look like & how you can support young people & their families within educational settings.

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Supported Loving toolkit page domestic abuse 

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Supported Loving toolkit page domestic abuse 

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What are the most common challenges faced by people in this area?

The Us Too team share their own life experiences and why they think having a learning disability, being autistic or both makes it more likely that domestic abuse could happen to you. They said:

"'We have had poor sex education.' We had little or no sex and relationship education during formal education. One result is limited knowledge of relationship 'rules' and what is okay. Another is that we don't have the words to explain what has happened to us."

"'We are overprotected.' We are often treated as children well into adulthood and were sheltered from opportunities to learn from experience and from 'difficult' subjects like sex and abuse. This can mean that we find it hard to form positive relationships and are more willing to tolerate bad ones."

"We may not know how to report, and if we do, we are not listened to."

"Our disclosures (verbal and non-verbal) can be thought of as part of our disability." This was particularly true for women with more significant disabilities, whose disclosures may come in the form of what is interpreted as 'challenging behaviour' rather than communication about abuse and trauma.

"'We can be reliant on the perpetrators.' Many of us were financially and practically dependent on our abusive partner."

"'Our supporters have not been trained in domestic abuse.' This can stop them recognising the signs that we are potentially being abused or what action to take."

"'We don't get the help we need.' None of the abuse we experienced resulted in criminal charges and domestic abuse services don't meet our needs."

"'Abuse is 'normal' to us.' Everyday abuse can be so common for us that we don't bother mentioning it."

"Many of us have learned compliance. Many of us have learned to do what is expected of us, and we become eager to please."

How best to support people to reduce the likelihood of domestic abuse occurring

Education

We need the best sex and relationships education at school and throughout our lives. This needs to include rules for relationships, the difference between good and bad relationships, and how to get out of a bad relationship.

Socialisation

We need to live our lives, take risks, learn from our mistakes. We want to meet people and need support to develop positive relationships.

Support

We need:

our support staff trained to spot the signs of domestic abuse; how to stop it, and make it less likely

the police trained on understanding learning disabilities and autism; to know that domestic abuse happens to us, and to ask us what we want

domestic abuse services to be accessible and trained in meeting our communication needs; to tell us how to contact them, what we can expect, and give us the support we want.

Empowerment

We need to be in control of our own lives, listened to, and for our choices to be respected.

Reporting

We need to know how to report abuse, and so do our supporters. Reporting needs to be quick and easy. We need to be believed.

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What are the most common challenges faced by people in this area? The Us Too team share their own life experiences and why they think having a learning disability, being autistic or both makes it more likely that domestic abuse could happen to you. They said: "'We have had poor sex education.'

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Gender, Sexuality and Neurodivergence research

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Gender, Sexuality and Neurodivergence research

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The Intersection of Gender, Sexuality, and Neurodivergence — Rebecca Minor | Gender Specialist

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The Intersection of Gender, Sexuality, and Neurodivergence — Rebecca Minor | Gender Specialist

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This year I have come to realize that the majority of my clients are multiply neurodivergent. Sonny Jane Wise (they/them) The Lived Experience Educator defines neurodiversity as “the natural diversity of human minds that acknowledges the whole spectrum of neuirdofsity from neurodivergent ind

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Supported Loving toolkit page contraception 

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Supported Loving toolkit page contraception 

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How best to support people with learning disabilities with their contraception and sexual health concerns

If you are supporting someone with a learning disability that needs contraceptive or sexual health advice or treatment, they have a right to have this as long as they are aged 13 or over. Under 12-year-olds are different because of the way the law supports young children in terms of sexual activity.

Ask the person who they would like to support them - Contraception and sexual health can be difficult or embarrassing for some people to speak about, including those with learning disabilities. It is essential that the person is comfortable with whoever is supporting them. For example, some people feel more comfortable discussing such issues with someone of the same gender. Some people can feel judged or stigmatised when they ask for help to access sexual health services, sometimes by the people who support them and sometimes by medical professionals. Scoping out services to find non-judgmental staff who will see people as sexual beings can be important.

Access specialist advice and services - It is important that the person receives accurate and up to date advice and information. This could be done through a family planning or sexual health clinic. These clinics are run by hospitals and doctors surgeries, and they have staff who are specially trained in family planning and sexual health. This might be better than going to a GP to talk about these issues because the GP may not be an expert in them. It is also useful to check whether any local hospitals have a clinic specifically for people with learning disabilities. These clinics are the same as others, only they will have longer appointment slots and the doctors, nurses, and health advisors will be specially trained. We have listed some of these at the end. The person may want you, or someone else, to come with them to the clinic, especially for the first appointment. This is okay, as long as the clinician talks to the person and not you.

Provide the person with accessible information - Very few of the people interviewed as part of the research described in the 'Research Insight,' reported being given accessible information about contraception (Earle et al., 2015; McCarthy, 2009). While some people with learning disabilities may have received some sex and relationship education at school or college, this may have been a long time ago or may not have covered the issue they need support with. Areas that people may require more information on include: how to access condoms, different contraceptive options, and their potential side effects. It is also important to provide information about other sexual health concerns such as sexually transmitted infections (STIs). The sexual health of all sexually active people with learning disabilities is important. This includes individuals who identify as LGBTQ+, as anyone who has unprotected sex is at risk of sexually transmitted infections, regardless of the gender or sex of the person they have sex with. Often clinics that are specifically for people with learning disabilities will have accessible information on contraception and sexual health. The reference section below contains links to some accessible information.

Consider the wider context - It is important to consider why contraception is being used or requested as this may highlight other issues that need to be addressed. Contraception is often used to prevent pregnancy in individuals who are sexually active. If this is the case, consider whether the person would like any other support to maximise their safety in and enjoyment of sex and relationships. Research has also found that contraception is used to prevent pregnancy in those who do not currently report sexual activity, but 'just in case' (McCarthy, 2009). Similarly, there are instances where contraception is provided to prevent pregnancy in individuals who are considered to lack capacity to consent to sex and/or at risk of sexual assault or exploitation. Contraception may prevent pregnancy in these individuals, but it does not protect them against abuse, or remove the obligation to provide protection from such abuse (World Health Organisation, 2014). The necessity of contraception in these cases should therefore be questioned with family members, support staff and administering clinicians. Thorough consideration should be given to what measures are in place to support the person and manage identified risks. Contraception may also be used for reasons other than preventing pregnancy. For example, many people use contraception to manage menstruation and associated physical and psychological symptoms. Are there any further steps you could take to enhance the person's involvement in or understanding of this process?

Facilitate ongoing choice and empowerment - As illustrated in the 'Research Insight,' some people with learning disabilities continue to have little control over their contraceptive choices. Regardless of the reason why contraception is being used, efforts should always be made to support the person to make their own decisions about their contraception use. In cases where the person is considered to lack mental capacity to make the decision, they should be supported to participate as fully as possible. These are two legal requirements under the Mental Capacity Act (England and Wales) 2005. It is also important to remember that contraception is rarely a one-time decision. For example, even once a person has started a long-acting reversible contraceptive (LARC), they should be supported to regularly consider whether the contraceptive is still right for them. Choosing a type of contraception is a highly personal choice, particularly as many contraceptives have the potential for side effects. It is important that people are supported to find what works for them. This includes stopping a contraceptive if a person wishes to. You also need to consider the person's parenting intentions and wishes. If and when the person wants to have a child is relevant to whether or not they use contraception and, if so, what type. Individuals with learning disabilities face multiple barriers to becoming and being parents, including negative assumptions about their parenting abilities and a lack of appropriate support (Working Together with Parents Network, 2014). However, people with learning disabilities can be, and do become, good parents (Working Together with Parents, 2009). See the Working Together with Parents Network for more information.

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How best to support people with learning disabilities with their contraception and sexual health concerns If you are supporting someone with a learning disability that needs contraceptive or sexual health advice or treatment, they have a right to have this as long as they are aged 13 or over.

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Supported Loving Toolkit page plus resources 

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Supported Loving Toolkit page plus resources 

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What are the most common challenges faced in this area and how best to support people to overcome them?

Not knowing what to assess - when delivering training I ask participants what a person needs to know in order to be considered to have the capacity to engage in sexual relations. I rarely get a correct answer. People often think you need to know a lot more than you actually do. Justice Mumby, who outlined the original criteria, "set the bar low" as he felt sex was a fundamental aspect of being human and the test should not be overly complex. Current case law states, in order to have capacity for sexual relations, a person needs to understand:

the mechanics of the sexual act and its character

the reasonable foreseeable consequences of sexual intercourse - namely pregnancy

they can say yes or no to having sexual relations and are able to decide whether to give or withhold consent

that there are health risks involved in sexual relations ie have a basic knowledge of Sexually Transmitted Infections (STIs). That sex can potentially make you unwell, and understand that these risks can be reduced by taking precautions such as condoms

the other person must have the capacity to consent to the sexual activity and must consent before and throughout the sexual activity - if not, then this is committing rape or sexual assault.

An assessment will usually be on a 'generalised forward looking basis', ie without reference to a specific (actual or prospective) sexual partner. However, there may be situations where the question is person-specific, for example, in a long-term monogamous relationship where one partner develops dementia. Then parts of the generalised test can be removed if they are not applicable. When assessing capacity, if there is something unusual about the case, you may need a specific question relating to the sexual act.

Not understanding it's about sexual relations - Capacity assessments are for concern regarding a person's capacity to engage in sexual relations. The test for capacity with respect to sexual relations does not apply to other expressions of affection such as kissing. People typically do not need assessments for this, but they must give their consent. We should always have written notes about how a person communicates consent and how we would know if they were not consenting.

Not understanding the role of education - I receive assessments for feedback where a person is labelled as 'lacking capacity to engage in sexual relations', with no attempt to provide education to help them to try and gain capacity. It would be like saying someone can't drive without ever giving them a driving lesson. People should be provided with relationships and sex education (RSE) that they understand, to be able to reach an informed decision and should not be deemed to lack capacity without this. People have a right to accessible information. (See our educational resources available here).

Not understanding the urgency - Imagine we met a partner and wanted to follow our natural instincts and have sex... but we were found to lack capacity and had to wait a year to receive sex education. It's unacceptable, but sadly happens. A man was awarded £10,000 (plus costs) from a local authority for such a delay. We encourage organisations to ask for timely support where needed, if a person faces such delays and restriction to their human rights. It might be helpful to share this article with them.

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What are the most common challenges faced in this area and how best to support people to overcome them? Not knowing what to assess - when delivering training I ask participants what a person needs to know in order to be considered to have the capacity to engage in sexual relations.

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BSc Outdoor Studies, MSc Occupational Therapy, PGCert Education, PGCert Sensory Integration

I have worked within specialist education for over 15 years predominantly with young autistic people and young people that have experienced childhood trauma in roles including:

Occupational Therapist

Vice Principal

Head of Education

Head of Therapy

I am autistic and have both personal and professional experience of sensory processing differences and the profound impact that understanding and developing sensory processing can have on all aspects of a persons quality of life. I have a particular interest in the use of outdoor environments and activities for developing sensory integration.

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BSc Outdoor Studies, MSc Occupational Therapy, PGCert Education, PGCert Sensory Integration I have worked within specialist education for over 15 years predominantly with young autistic people and young people that have experienced childhood trauma in roles including: Occupational Therapist Vice Principal Head of Education Head of Therapy I am autistic and have both personal and professional experience of sensory processing differences and the profound impact that understanding and developing sensory processing can have on all aspects of a persons quality of life.

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Loops of Concern - rumination in autistic

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Loops of Concern - rumination in autistic

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A short self-help guide to tackling rumination for autistic people (may also be useful for others)
Many autistic people get very stuck in loops of rumination and uncertainty, and the feeling of going round and round, the anxiety and worry, can be really unbearable. I call this 'loops of concern'. This could be a result of our more monotropic minds, or it could be because we are more greatly impacted by uncertainties (or have more uncertainties to deal with) - or both. Often, these loops are centred around something we are not sure about: was that friend angry? Did I leave my phone on the bus or at home? Did I misinterpret or accidentally break a rule? Etc.

If you think about it, it makes sense that if we are uncertain about something that could have unpredictable and potentially bad consequences, we would want to try to resolve the worry - it's a natural facet of our problem-solving brains to try to adapt to uncertainty by figuring out possible scenarios and deciding what to do. Many non-autistic folks also get stuck in loops of concern, though whether it's because they are less monotropic, and/or experience more certainty and control in life (I'm speaking in very broad terms here! This is obviously not true for many non-autistic people), it may impact them less harshly. There is a (I think reasonable) stereotype of autistic folks taking a problem or interest and working at it tirelessly with extreme focus. This can be great when it's something we're into, but not so great when we are stuck and distressed.

To resolve these loops of concern, it can be worth trying to tackle the uncertainties they might spring from via both feelings and information/planning, especially as one approach might be less fruitful at times, or another approach might be more unhelpful in the moment. As individuals, we also can often have a tendency to favour either feelings or logic - but both are important, and really you can't have one without the other (much longer discussion needed on this!).

For example, it might not be possible to get definitive reassurance or information on an issue, you might still feel bad even with the info that you thought you needed (maybe your feelings will tell you what you actually need), and equally sometimes, an accessible piece of info is all that's needed for the difficult feelings to go away. Interestingly, sometimes just identifying the root uncertainty (and it might not be an obvious one) can help resolve a loop, even while it still stays uncertain - perhaps having a clearer idea of exactly what we're uncertain about gives us the ability to weigh up better how much threat there might really be, and feel more in control.

This is a guide I put together, initially for myself, to work through these loops of concern. I hope you might find it helpful.
Navigating Loops of Concern
Try to work through these questions slowly, whenever you feel like you are falling too much into a loop and getting stuck. You can do them in any order you like, and move back and forth between feelings, info and action if that is helpful. If focusing on these questions is proving too difficult, it's possible that you are overtired/hungry/thirsty/have other bodily needs. Try to do some simple restful distracting things, go to the toilet, refuel, etc, and then come back to these questions later if they are still on your mind.

Return to these questions and your answers when needed, try to answer them further, or read back on what has been resolved, and what steps are being taken.
INFO

Summarise the main thoughts I'm looping through in bullet points. Can I turn them into questions?

Can I answer any of these questions? (add answers)

Can anyone else answer any of these questions? Who/how?

What am I certain about related to these questions?

What am I uncertain about?

What might be needed to resolve these uncertainties? (don't worry if you can't resolve all of them, or if what's needed doesn't seem feasible - we're just looking at what it might take at this point)

Are there people I can/want to talk with about this? Who? Draft some messages/imaginary conversations here.

Add any reflections I might have on folks' responses.

*Sometimes, I've found it helpful to look back at old messages or other written information, as it gives me a sense of certainty over what was written/said. If you have anything similar, you could quote them here, or save them in a folder on your phone or computer for easy access. Over time, you might find that you will only need to glance at the documents, or even just know they're there, until you don't need them anymore. (examples: someone telling you that they care about you; a clear list of instructions for a job)

What are the main themes or conclusions that are emerging?
FEELINGS
What am I feeling just now? Try to make some sentences starting with "I feel"... these could be physical or emotional sensations, images and metaphors.

*particularly if you struggle with identifying or naming your feelings, you might start with thinking about your bodily sensations: is there anywhere that feels tight or loose? Sore? Hot/cold? You could use analogies, music, images... (reaction gifs, even!). What are some other times when you have felt sensations like this? Do they give you some clues as to what's going on for you? Try to stay with the feelings rather than over-analyse them cognitively.

(e.g. sometimes when I'm really anxious, I describe myself as feeling full of bees)

Some suggested emotion words that can lead to a feeling of agitation:

Worried

Sad

Excited

Joyful

Frustrated

Angry

Ashamed

Disappointed

Scared

Anxious

If I am feeling generally bad/frustrated/down/anxious, is this because of any of the uncertainties and feelings listed above, or is it because I am mentally exhausted / hungry / some other identifiable unrelated stress? What specific things can I do to take a break or resolve some of these feelings?

ACTION

What does my body need? Can I prioritise that? (rest? / food or water? / uncluttered spaces to look at? outdoors? exercise? fun? deep pressure? physical contact?)

Can I write about any of the themes above? Or use a different creative outlet such as music, art, poetry, etc?

Are there people I can check in with (either to resolve an uncertainty or to let off some steam)?

Is there information I need to find or tasks I need to do to help resolve the issues explored above?

List some very simple tasks based on the above points (broken down from larger tasks perhaps) for things I need to do. Tick them off if I do some.

-
Enjoyed my writing? Help me write more, buy me a coffee: ko-fi.com/scrappapertiger

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A short self-help guide to tackling rumination for autistic people (may also be useful for others) Many autistic people get very stuck in loops of rumination and uncertainty, and the feeling of going round and round, the anxiety and worry, can be really unbearable. I call this 'loops of concern'.

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Title: “I felt like I deserved it because I was Autistic”: Understanding the Impact of Interpersonal Victimisation in the Lives of Autistic People  Running title: Interpersonal victimisation in Autistic Adults    Amy Pearson¹, Kieran Rose², and Jon Rees¹ 

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Title: “I felt like I deserved it because I was Autistic”: Understanding the Impact of Interpersonal Victimisation in the Lives of Autistic People  Running title: Interpersonal victimisation in Autistic Adults    Amy Pearson¹, Kieran Rose², and Jon Rees¹ 

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This was just how this friendship worked”: Experiences of Interpersonal Victimisation among Autistic Adults

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This was just how this friendship worked”: Experiences of Interpersonal Victimisation among Autistic Adults

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Talking Mat via Powerpoint - 'big feelings'

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Talking Mat via Powerpoint - 'big feelings'

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Shazzy Tharby R. on LinkedIn: #adhdadult #adhd #adhdparenting #muslimmentalhealth #muslimcommunity...

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Shazzy Tharby R. reposted this

Clinical Nurse Consultant | Credentialed Mental Health Nurse | Counselling Psychotherapist | Clinical Supervisor I Neurodiversity & Disability Zealot | DEI=B warrior | Actually Autistic ADHD PDA expert ♾️♿🇹🇿🇬🇧🇦🇺

On my journey through webworld I found this twelve year old article by Virginia Hughes on a small study by BRINDA JEGATHEESAN 'For her doctoral dissertation, educational anthropologist Brinda Jegatheesan observed three South Asian immigrant families who have young boys with autism. All are practicing Muslims and multilingual. For 17 months, Jegatheesan observed and tape-recorded how family members interact with each another and with other people in their communities. She also conducted in-depth interviews with the parents to find out their opinions' Read more here: https://lnkd.in/gzRyzitd#autism #autismacceptance #autismcommunity #diversity #islam #muslimmentalhealth #muslimcommunity #autismparenting #autismparents

Islam and autism | Spectrum | Autism Research News

https://www.spectrumnews.org

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On my journey through webworld I found this twelve year old article by Virginia Hughes on a small study by BRINDA JEGATHEESAN 'For her doctoral dissertation, educational anthropologist Brinda Jegatheesan observed three South Asian immigrant families who have young boys with autism. All are practicing Muslims and multilingual. For 17 months, Jegatheesan observed and tape-recorded how family members interact with each another and with other people in their communities. She also conducted in-depth interviews with the parents to find out their opinions' Read more here: https://lnkd.in/gzRyzitd#autism #autismacceptance #autismcommunity #diversity #islam #muslimmentalhealth #muslimcommunity #autismparenting #autismparents

Islam and autism | Spectrum | Autism Research News

https://www.spectrumnews.org

Shazzy Tharby R. reposted this

Writer/Editor, Coach/Consultant | (Neuro)diversity, Inclusion, & Belonging, Mission-Driven Brands

If you want to create or locate neuroinclusive workplaces, consider joining Autistic Women's Alliance April 29th, 1pm Eastern. Moderated by Shazzy Tharby RN CMHN, this talk features Dr. Alicia A. Broderick, who will discuss developing inclusive workplaces for neurodivergent professionals and allies. Dr. Broderick is the author of The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism Into Big Business. Her expertise on neuroinclusion is invaluable.#ActuallyAutistic #Autism #Diversity #Inclusion

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If you want to create or locate neuroinclusive workplaces, consider joining Autistic Women's Alliance April 29th, 1pm Eastern. Moderated by Shazzy Tharby RN CMHN, this talk features Dr. Alicia A. Broderick, who will discuss developing inclusive workplaces for neurodivergent professionals and allies. Dr. Broderick is the author of The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism Into Big Business. Her expertise on neuroinclusion is invaluable.#ActuallyAutistic #Autism #Diversity #Inclusion

Clinical Nurse Consultant | Credentialed Mental Health Nurse | Counselling Psychotherapist | Clinical Supervisor I Neurodiversity & Disability Zealot | DEI=B warrior | Actually Autistic ADHD PDA expert ♾️♿🇹🇿🇬🇧🇦🇺

A very deserving Go Fund Me Please help 🙏🏼

Soon to be Doctoral Student with a focus on Methdology for Transgender and Nonbinary folks

An autistic disabled Black woman needs helps with housing. Their parents are kicking them out of housing on September 1st, 2023! She has applied to every assisted housing option in her area. If you have housing that works within her budget in the Vancouver area, let me know and I'll send her the link. Here is her gofundme: https://lnkd.in/gKdvDZEc Please spread this as far and as wide as possible!

Help House An Autistic Black Woman, organized by Tasia Smallwood

gofundme.com

To view or add a comment, sign in

Soon to be Doctoral Student with a focus on Methdology for Transgender and Nonbinary folks

An autistic disabled Black woman needs helps with housing. Their parents are kicking them out of housing on September 1st, 2023! She has applied to every assisted housing option in her area. If you have housing that works within her budget in the Vancouver area, let me know and I'll send her the link. Here is her gofundme: https://lnkd.in/gKdvDZEc Please spread this as far and as wide as possible!

Help House An Autistic Black Woman, organized by Tasia Smallwood

gofundme.com

Psychiatrist. Author: Fragile Nation/Exotic Rissole. Contributor Ch 9/AFR/Sky

I write about govt making courageous attempts to better differentiate kids with more serious autism and those that might improve with intensive treatment. This will be key step in helping to make the NDIS more sustainable. #autism #ndis #disability https://lnkd.in/dQsr_VSR

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Shazzy Tharby R. on LinkedIn: #adhdadult #adhd #adhdparenting #muslimmentalhealth #muslimcommunity...

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Shazzy Tharby R. reposted this Clinical Nurse Consultant | Credentialed Mental Health Nurse | Counselling Psychotherapist | Clinical Supervisor I Neurodiversity & Disability Zealot | DEI=B warrior | Actually Autistic ADHD PDA expert ♾️♿🇹🇿🇬🇧🇦🇺 On my journey through webworld I found this twelve year old article by Virginia Hughes on a small study by BRINDA JEGATHEESAN 'For her doctoral dissertation, educational anthropologist Brinda Jegatheesan observed three South Asian immigrant families who have young boys with autism.

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Nonspeaking is not a bad thing, so why should it be portrayed as such?
Alternative communication is normal and beautiful 🌺
#AutisticComicTakeover #AutismAcceptanceMonth

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Nonspeaking is not a bad thing, so why should it be portrayed as such?
Alternative communication is normal and beautiful 🌺
#AutisticComicTakeover #AutismAcceptanceMonth https://t.co/ExlI9JrfP3

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Nonspeaking is not a bad thing, so why should it be portrayed as such?
Alternative communication is normal and beautiful 🌺#AutisticComicTakeover #AutismAcceptanceMonth pic.twitter.com/ExlI9JrfP3
— Ryan🏳️‍⚧️💚 (@happiestinwintr) April 23, 2023

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
Nonspeaking is not a bad thing, so why should it be portrayed as such?
Alternative communication is normal and beautiful 🌺
#AutisticComicTakeover #AutismAcceptanceMonth https://t.co/ExlI9JrfP3

# data[].attributes.attachment_link.metadata.attachment_props.original_text
Nonspeaking is not a bad thing, so why should it be portrayed as such?
Alternative communication is normal and beautiful 🌺
#AutisticComicTakeover #AutismAcceptanceMonth https://t.co/ExlI9JrfP3

# data[].attributes.attachment_link.metadata.attachment_props.text
Nonspeaking is not a bad thing, so why should it be portrayed as such?
Alternative communication is normal and beautiful 🌺
#AutisticComicTakeover #AutismAcceptanceMonth

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DEP Falling out with friends visual tool, made by Kate Boot @AuDHD_SLT

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DEP Falling out with friends visual tool, made by Kate Boot @AuDHD_SLT

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DEP falling out with friends tool - made by Kate Boot @AUDHD_SLT

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Do you stim? Super excited to post my first collab for #AutisticComicTakeover and #AutismAcceptanceMonth about Black Stims. @StariiDreams is a dream collaborator and so fricken talented! I happy stimmed when I saw the thumbs (1/3)

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Do you stim? Super excited to post my first collab for #AutisticComicTakeover and #AutismAcceptanceMonth about Black Stims. @StariiDreams is a dream collaborator and so fricken talented! I happy stimmed when I saw the thumbs (1/3) https://t.co/DYWIAPoKEJ

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Do you stim? Super excited to post my first collab for #AutisticComicTakeover and #AutismAcceptanceMonth about Black Stims. @StariiDreams is a dream collaborator and so fricken talented! I happy stimmed when I saw the thumbs (1/3) pic.twitter.com/DYWIAPoKEJ
— Leesha Left Eye (@Girl_Unleeshed) April 12, 2023

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Do you stim? Super excited to post my first collab for #AutisticComicTakeover and #AutismAcceptanceMonth about Black Stims. @StariiDreams is a dream collaborator and so fricken talented! I happy stimmed when I saw the thumbs (1/3) https://t.co/DYWIAPoKEJ

# data[].attributes.attachment_link.metadata.attachment_props.original_text
Do you stim? Super excited to post my first collab for #AutisticComicTakeover and #AutismAcceptanceMonth about Black Stims. @StariiDreams is a dream collaborator and so fricken talented! I happy stimmed when I saw the thumbs (1/3) https://t.co/DYWIAPoKEJ

# data[].attributes.attachment_link.metadata.attachment_props.text
Do you stim? Super excited to post my first collab for #AutisticComicTakeover and #AutismAcceptanceMonth about Black Stims. @StariiDreams is a dream collaborator and so fricken talented! I happy stimmed when I saw the thumbs (1/3)

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Autistic and Medical Transitioning visual

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Autistic and Medical Transitioning visual

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A lot of autistic people are also trans! Let’s talk about what it’s like to be autistic and medically transition! (1/3)
#AutisticComicTakeover
#AutismAcceptanceMonth

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A lot of autistic people are also trans! Let’s talk about what it’s like to be autistic and medically transition! (1/3)
#AutisticComicTakeover
#AutismAcceptanceMonth https://t.co/8iLHbPa4AI

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A lot of autistic people are also trans! Let’s talk about what it’s like to be autistic and medically transition! (1/3)#AutisticComicTakeover#AutismAcceptanceMonth pic.twitter.com/8iLHbPa4AI
— tabby (@tabbycolours) April 19, 2023

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A lot of autistic people are also trans! Let’s talk about what it’s like to be autistic and medically transition! (1/3)
#AutisticComicTakeover
#AutismAcceptanceMonth https://t.co/8iLHbPa4AI

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A lot of autistic people are also trans! Let’s talk about what it’s like to be autistic and medically transition! (1/3)
#AutisticComicTakeover
#AutismAcceptanceMonth https://t.co/8iLHbPa4AI

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A lot of autistic people are also trans! Let’s talk about what it’s like to be autistic and medically transition! (1/3)
#AutisticComicTakeover
#AutismAcceptanceMonth

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Here is the comic @theorah and I made this year for #AutisticComicTakeover about Autism and routine! Theorah did the script and helped with the thumbnailing and I did the art! (1/4) #AutismAcceptanceMonth #ActuallyAutistic

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Here is the comic @theorah and I made this year for #AutisticComicTakeover about Autism and routine! Theorah did the script and helped with the thumbnailing and I did the art! (1/4) #AutismAcceptanceMonth #ActuallyAutistic https://t.co/XS2mHlAeds

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Here is the comic @theorah and I made this year for #AutisticComicTakeover about Autism and routine! Theorah did the script and helped with the thumbnailing and I did the art! (1/4) #AutismAcceptanceMonth #ActuallyAutistic pic.twitter.com/XS2mHlAeds
— Rhia🐟Commissions Open (@SaltedGayFish) April 21, 2023

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Here is the comic @theorah and I made this year for #AutisticComicTakeover about Autism and routine! Theorah did the script and helped with the thumbnailing and I did the art! (1/4) #AutismAcceptanceMonth #ActuallyAutistic https://t.co/XS2mHlAeds

# data[].attributes.attachment_link.metadata.attachment_props.original_text
Here is the comic @theorah and I made this year for #AutisticComicTakeover about Autism and routine! Theorah did the script and helped with the thumbnailing and I did the art! (1/4) #AutismAcceptanceMonth #ActuallyAutistic https://t.co/XS2mHlAeds

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Here is the comic @theorah and I made this year for #AutisticComicTakeover about Autism and routine! Theorah did the script and helped with the thumbnailing and I did the art! (1/4) #AutismAcceptanceMonth #ActuallyAutistic