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ID: something that looks like some kind of nerve or signal (I'm not a scientist) on a light turquoise background.

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Alexithymia is characterised by difficulties identifying feelings. It can also be linked to difficulty interpreting facial expressions and recognising faces. This article explains more about alexithymia including prevalence. The prevalence of alexithymia is reported to be less than 10% in the general public and between 40-70% in autistic people. Click here for article.

Alexithymia is linked to interoception - the eighth sense, which is an awareness of bodily sensations. Autistic people are more likely to have either high or low interoception. This means they could feel things very intensely, or not notice signs in their body at all. Click here for a post by Terra Vance which explains more.

In terms of perinatal care, this means an autistic person might have trouble identifying or communicating things such as fetal movements, symptoms and pain.

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ID: person in fetal position with eyes closed, speech bubbles containing question and exclamation marks and scribbles come from her head. 

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Like meltdowns, shutdowns are an involuntary physical response to an overwhelming situation. It is the brain's way of trying to protect itself from too much information to process.

During a shutdown, a person may lose the ability to speak, they might hide (could just be their face in their hands), leave the room or run off. They may be unable to move or seem stiff with a blank expression. They may be able to hear you talking but might not be able to make sense of the words.

In this video, click here, Amythest Schaber describes shutdowns from personal experience. They suggest the following steps to help a person in shutdown:

1) Find a space with low sensory input if they are able to move, or reduce sensory input in the current space
2) Avoid talking or asking too many questions
3) Ideally, find out in advance what helps them to deal with a shutdown (some may like a firm hug but if you do not know this, avoid touch) - they may prefer your presence or space
4) Shutdown is a signal the person has too much going on, when they are able to communicate have a chat to address the cause.

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ID: a flipchart calendar with a date ticked off in red, on a dark pink background.

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Autistic people feel far more at ease when they know what to expect. Sudden changes can cause anxiety.

Help them prepare by letting them know what they can expect to happen, whether that's during a pregnancy stage or at an appointment.

For example, to help them prepare for an antenatal appointment, send them as much information as possible such as -

Where the appointment will take place.
Who will be in the room.
What the purpose of that particular appointment is.
What will be discussed at the appointment.
What observations or procedures will be offered at the appointment, and what each of those involves.
How long the appointment is expected to last.
What the usual wait time is.
What they are expected to bring with them.
Anything they might be taking home with them.
Any resources or materials for them to look at in advance to prepare for the appointment.

Consider that moving an appointment for an autistic person may cause a lot more anxiety than moving an appointment for a neurotypical person. If you do need to change appointments or if the clinic is running late, give as much notice and detail as possible.

Make sure you give notice if somebody else is likely to enter the room and check they are alright with this. For example, in labour, let them know if you would like to invite the doctor into the room and why.

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ID: green speech bubbles against pale blue background.

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Make sure you are aware of their communication needs early and that you are able to meet their needs ahead of each appointment.

Even if they communicate verbally, they may be unable to speak in certain situations. How would they prefer to communicate with you? Would they like an interpreter? What tools do they prefer to use for communicating? How much extra time do they need to process information?

Find out how they would like to communicate with you in between appointments.

Click here for more information on the type of communication difficulties autistic people may have.

Click here for a video by autism activist Damon Kirsebom, sharing the experience of non-speaking autistic people.

Click here for a post about why AAC should be for everyone and why some autistic people communicate most effectively by writing or typing.

Click here for more information on AAC.

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ID: two people jumping into mid air against pink background. Wording reads, 'Stimming welcome here.' 

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Stimming, self-stimulatory behaviour, helps autistic people regulate. Suppressing stims is detrimental to mental health, yet many autistic people are taught to do just that from a very young age, being told that their stims are not appropriate behaviour (i.e. they are not neurotypical behaviour).

Lauren Melissa Ellzey explains in this article why it is so important to free the stim. Click here for article.

Do whatever you can to let those in your care know they are welcome to stim, whether that's in the waiting room, during their appointment, in labour, on the ward, anywhere in your company.

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ID: lots of paper aeroplanes with one flying off in a new direction.

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Autistic people can have difficulty adapting to change (more on that here). Having a baby is one of, if not the, biggest life change someone might go through.

Preparing for a baby is a little like preparing for the unexpected. Babies are not the most predictable humans! Yo Samdy Sam describes her experience of being an autistic mother in this video.

Autistic people generally like to research and gather lots of information, so support them to find evidence-based information in whatever format suits them best. Help them to understand newborn baby behaviour so there are as few surprises as possible. Help them find a support network for both before and after the baby (it doesn't have to be a big network, one or two people) to help make the transition more manageable.

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This post from Authentically Emily explains the link between autism and anxiety. Click here to read the post.

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ID: parent and child embrace in a strong clutch with foreheads touching.

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There is so much misinformation surrounding autism that needs addressing and the myth around autistic people's lack of empathy is no exception.

So-called autism 'experts' came up with the idea that because autistic people did not seem to demonstrate empathy in a neurotypical way, they must be incapable of identifying with another's feelings.

This means there is a higher rate of interventions from social services with autistic parents compared to neurotypical parents. In this article, Kayla Tellier explains how this can prevent autistic people disclosing their diagnosis or asking for help. Click here for article.

Dr Damian Milton's theory of the 'double empathy problem' explains the misconception around autism and lack of empathy. Click here to read a summary of the theory.

Autistic people can make very loving, caring and wonderful parents. They can also make impatient, short-tempered and self-centred parents too, and everything in between - JUST like neurotypical people!

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Sara King is conducting research for the RCM into how well staff feel supported to care for autistic people in the perinatal period. You can read more about this here.

If you would like to participate in the research, you can answer the survey here.

The Queer Birth Club run a fantastic LGBT+ competency course for birth workers and those who support lactation. Click here for more information.

'Ask me, I'm autistic' is a closed Facebook group, click here, where you can learn more about autism and autistic people from autistic people - the best way to learn! Yes, autistic people can speak for themselves, who knew?

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ID: a yellow eye, pink ear and turquoise nose in separate speech bubbles on a purple background.

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Autistic people can experience sensory overload (more on that here) and raising a baby can be a very sensory experience - there are a lot of smells, sounds and sensations involved!

Some of the sensory experiences may be very welcomed, for example, having a small baby lying on your chest can feel similar to the comfort of a weighted blanket.

Some autistic people are hyposensitive to sensory stimulation, meaning they have an under-sensitive reaction to stimuli. For example, they may not experience nipple pain with a shallow latch. This might sound positive, but it can be quite unhelpful since pain is an important signal that something is not quite right that needs to be fixed. Ensure they understand all the signs of effective attachment.

On the flipside, autistic people are more likely to experience being 'touched out' and nursing aversion due to sensory overload. Prepare parents by talking antenatally about the different experiences they may have so that anything negative comes as less of a shock. Zainab Yate has some fantastic resources on dealing with aversion and has set up a peer-to-peer support group for those suffering. Click here for more information.

The noise of your baby crying is not a pleasant experience regardless of neurology, but is more problematic for autistic parents who may experience sensory overload from this sound.

If the baby is chest/breastfed, the vast majority of the time fussiness is caused either by shallow/ineffective attachment or infrequent feeding. Offer support as early as possible to help baby latch effectively and find ways that might help the parent to respond to baby's cues as early as possible.

If the baby is bottlefed, responsive bottlefeeding is the most effective technique for supporting digestive comfort and helping the baby feel calm and secure.

Cuddling baby, babywearing and keeping baby close are all helpful ways to prevent excessive crying.

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On her website Emily Lees, an autistic speech and language therapist, explains different autistic communication skills and interaction styles. Read here to learn more.

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This concise summary by Alex Parker describes what burnout feels like and steps an autistic person can take to recover. Read it here.

This post from Laura Weldon explains the research she is doing on autistic burnout, investigating it as a state of neuroinflammation caused by trauma. Click here for post.

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ID: two colourful masks, one happy, one sad, on lilac background.

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Masking is a form of camouflaging. It involves suppressing natural autistic behaviour, like stimming, and engaging in uncomfortable neurotypical behaviour, like eye contact, in order to fit in and be treated with respect. It is very emotionally and physically draining.

This article by Jacquelyn Fede and Amy Laurent explores the higher levels of depression and anxiety among autistic people and the role that masking plays. Click here for article.

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ID: white puzzle piece with wording, '$peak for your$elve$' on a blue background.

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Autism Speaks is a dangerous but prominent American organisation, whose CEO gets paid a ridiculous amount of money. Their funding goes mostly on research looking for a 'cure' for autism. None of their board members are autistic. Kaylene, from Autistic Mama, explains more on her post here.

Autism Speaks popularised the puzzle piece as a representation of autism. The puzzle piece is problematic and harmful, as explained in this Learn From Autistics article here.

Autism Speaks also are responsible for spreading misinformation surrounding vaccines and autism.
Click here for information.

While Autism Speaks is an American charity whose influence is not as strong in the UK, many UK professionals working with autistic people use Autism Speaks resources and the website often ranks highly on Google searches.

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ID: white lettering reads, 'The 10K backtrack', on dark pink background.

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Spectrum 10k is a new research project led by the University of Cambridge, currently on hold due to concerns over eugenics and consent for using genetic data. Sarah Boon addresses the concerns here.

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ID: medical notes on blue clipboard with red DNR lettering stamped on top.

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During Covid, Do Not Resuscitate orders were being given to autistic patients, as well as others with learning difficulties, without discussion with the patients and families. More on this here.

How much might an autistic person feel able to place trust in healthcare professionals following reading such stories, particularly if they are also a person of colour, following the widely documented racial disparities in Covid deaths and the MBRRACE report on maternity outcomes?

Improving autism acceptance in healthcare is arguably the most effective step to be taken to both restore trust and improve outcomes.

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ID: red, triangular warning sign with wording, 'DO NOT BREAK THE MOULD', on light blue background.

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It's important to consider what previous experiences autistic people have had with healthcare professionals when we are supporting them. Most people who are diagnosed as autistic have been through 'treatment' akin to conversion therapy, where they are conditioned to behave more neurotypically, usually by withholding rewards until they comply.

This therapy is formally known as ABA and though it's often not explicitly called that and not always overtly practised or prescribed, the principles and techniques are very much still in use in the UK in both the education and healthcare system.

This resource from Stop ABA, Support Autistics covers the problems with ABA. Click here to view.

ABA techniques are widely associated with PTSD and considered abusive by the autistic community. We need to be aware the autistic people in our care come to us with trauma, likely experienced in a healthcare setting.

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This article from the National Autistic Society explains how autistic people often process sensory information differently to allistic people. This can have a profound impact on everyday life given that virtually all social and public environments are designed with allistic people in mind. Click here to read more about sensory differences and what you can do to help.

Sensory processing can have a negative impact on an autistic persons ability to access healthcare. Generally speaking, healthcare settings are not autism friendly spaces. They are busy, brightly lit, unfamiliar with clinical smells and lots of noise.

Walk through your workplace and as best as you can, try to consider it from an autistic person's perspective. Better still, if you know one of your colleagues is autistic, ask their opinion. Or perhaps you could conduct a survey with autistic service users asking about their experience.

Really tune in to the sights, sounds and smells of the surroundings. What could you do to make it a more comfortable, calm and welcoming environment?

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ID: a pregnant person sitting down, overwhelmed with sweat and steam coming off their body, appears to be on the verge of meltdown.

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The National Autistic Society describe a meltdown as 'an intense response to an overwhelming situation. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses control of their behaviour.'

Purple Ella explains in her video what meltdowns are, what causes them and how to prevent them. She also shares the following tips for how to support an autistic person during meltdown:
1) Take them somewhere safe and quiet
2) Don't talk
3) Don't touch them
4) Be there for when the meltdown ends to offer support
Click here to watch the video.

Embrace Autism describe the autistic experience of meltdown, shutdown and overwhelm here.

If somebody is showing aggressive behaviour, this is a good checklist for identifying the source. It is written with children in mind, but most of the points would be applicable to adults too. Click here for checklist.

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As a general rule, autistic people like to be prepared and they like to do their research. It might be that parenting becomes a special interest of theirs.

Help them with this by finding out early on in their pregnancy how they most like to have information presented - audio, visual, written, online, paper?

Ensure they have access to evidence-based information and are given the opportunity to discuss their research with you in appointments.

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Sleep difficulties appear to co-occur with autism. More information on the link between sleep problems and autism here.

You can help parents by encouraging them to prepare in pregnancy. Provide them with evidence-based information on normal baby behaviour so they know what to expect. There is nothing less conducive to sleep than worrying there is something wrong with your baby or what you are doing, so make sure they understand that it is normal, natural and healthy for babies to wake frequently. Perhaps we should positively reframe night waking by calling it night nurturing.

The most effective two ways to minimise the disruption of baby waking is chest/breastfeeding (see feeding section above) and sleeping as close to baby as possible - either bedsharing or with baby in a bedside crib. The Lullaby Trust (click here) and BASIS (click here) are reliable resources for safer sleep information.

What jobs can others do, for example cook dinner, to give the parent better chance for rest the next day?

In this post, Florence Neville shares sleep strategies from the autistic community. Click here for post.

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Autistic people tend to like having routine and structure and a new baby can feel disruptive of that.

Help them to explore, ideally antenatally, which part of their current routine is most important to them and how they might be able to retain that. How might others be able to take on aspects of their routine to help minimise change (e.g. if the autistic person normally vacuum cleans, could a partner or support person take that task, ideally during pregnancy so there isn't lots of change occurring at once)?

Where possible, help them find ways to keep their usual self-care aspects, such as having a bath or going on a dog walk, as part of their same routine.

Prepare them for the fact that most babies don't like routine and have relatively constant needs. Some ways to minimise the impact of that could include chest/breastfeeding (latching a baby on is less disruptive to your day than making up bottles) as well as babywearing (baby stays calm when close and your hands are kept free for other tasks). Lots of areas in the U.K. have sling libraries where parents can try out babywearing using different slings to see if it is for them.

If somebody is keen to get their baby into a feeding and/or sleeping routine, encourage them to wait until their baby is at least 6 weeks old to avoid impacting their ability to build a full milk supply. Young babies especially like to stay close to their parents and have changing needs throughout the day and night, keeping them waiting for food or comfort often makes them very upset. Therefore the parent might have to decide between their need for routine and their need for calm. The longer they wait, the easier it is to get into a routine - older babies are easier to distract with different interactions.

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ID: parent with lilac hair caresses baby against chest.

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Open up conversations early in pregnancy to explore feelings around feeding, discover what the parent's wishes and concerns are so that you can support them in making informed decisions about what might be best for them and allow them enough time to process information and prepare.

Chest/breastfeeding has many benefits for both parent and child and there are specific reasons why it might be most beneficial for autistic parents.

1) Chest/breastfeeding is proven to be protective against and reduce the severity of postnatal depression (more information here).

2) Chest/breastfeeding is compatible with poor executive function - you can just hang out on the sofa with baby, not having to calculate temperatures or sterilising or getting your head around a set of instructions at each feed.

3) Chest/breastfeeding parents get more sleep (more info here) and autistic people often have greater difficulty with sleep than neurotypical people. Chest/breastfeeding also provides more opportunity for rest throughout the day, which was reported by autistic parents in a systematic review (more info here, under breastfeeding section in results).

Avoid the temptation to encourage their partner or somebody else to feed the baby to ‘make things easier’ especially if they have not voiced this is what they would like. (Is there actually somebody else who is going to be available to do this long-term around the clock anyway?) Autistic people are just as capable of chest/breastfeeding as allistic people, do not doubt their ability or undermine their confidence. Is there another area a partner or support person could take responsibility for to make things easier?

If they would like or need to bottlefeed, encourage them to be either the sole or main person feeding and encourage them to have regular skin-to-skin with baby to help build a relationship and reduce the risk of depression. If skin-to-skin causes sensory overload for them, you could talk with them about which times overload might be less likely to occur and encourage skin-to-skin then. Or find out how they feel about different ways to have this contact that might be less overwhelming - bathing together, baby massage, or babywearing while engaging in a distraction all may help, though every person is an individual. Offer them information on responsive bottlefeeding, which will help them build a connection with their baby and minimise some of the risks associated with bottlefeeding. More information here.

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ID: a pregnant person sitting on what looks like an uncomfortable chair, with a slightly disgruntled expression, wearing green slippers.

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Autistic people might demonstrate pain differently and can be either hyper- or hypo-sensitive to pain. Yo Samdy Sam addresses this in her video about being autistic and pregnant: click here.

Ask questions such as,
"Are you comfortable right now?"
"What can I do to help you get more comfortable?"
Involve their support partner where appropriate, they are likely to be more familiar with their loved one's signals to be able to advocate for them.

Encourage them to write in their birth preferences ahead of time what it usually looks like when they are in pain and what usually helps them. Read their birth preferences so you can best support them - it might be hard for them to communicate these things to you in the moment.

Anxiety and stress often causes and exacerbates pain in labour. Autistic people are more likely to be in-tune with the environment. Take whatever steps you can to make it as calm and comfortable as possible (e.g. dim lights, hushed voices).

This study highlighted how autistic people were more likely to experience untreated pain in labour. Click here for more information.

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Emma Mitchell @silverpebble recently tweeted: "I just learned that the Māori word for autism is takiwatanga, ‘in his/her own time and space’. It’s such an empathic and gentle way to describe the condition I’m trying to come to terms with."

Providing time and space is a reasonable adjustment for autistic people. What that might look like:

Allocating them a private space to wait in for appointments, or their own private room on the ward if they are an inpatient.

Booking them a double appointment so there is more time for them to process information and ask questions.

Booking them an appointment at the end of the clinic so you are not in a hurry to see the next person.

Running a specialist autism-friendly clinic for autistic service users, where noise and lighting is kept to a minimum, appointments are longer than usual and all staff working at the clinic have taken autism competency training.

Offering them appointments in their own home with a familiar healthcare professional.

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ID: can of beans on a neutral background. Orange writing above reads, "full of beans".

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Avoid idioms that have no literal meaning - “you seem full of beans”, “are you under the weather?”

Make sure your language is accurate - say “I aim to be back within an hour” instead of “I’ll be back in a minute.”

Be clear with any instructions - if you asked an autistic person to watch where they are walking, they likely might look at their feet, but if you asked them to watch where they are going, they likely might look ahead. Becks Harper gives lots of valuable recommendations in an article here. She suggests asking people if they prefer having information presented as 'what to do' or 'ideas to try'.

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ID: a medical professional with clipboard is standing, explaining something to a pregnant person who is reclining on a pillow. The background is light blue.

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Autistic people tend to have a very literal interpretation of language, so be mindful of the words you choose and the harm they can cause. An autistic person may struggle or entirely fail to interpret your euphemisms or implied meaning. Similarly, you may read meaning in an autistic person's words that they are not intending to convey.

Stamping out and challenging ableist language is a quick and straightforward first step towards changing the culture in healthcare settings.

Think about the true meaning of words when you are speaking with both service users and colleagues. For example:
"Dumb [i.e. useless] computer."

"How lame!"

"I can’t find it, I’m being blind."

"Are you deaf or something?"

"The lady in bed 3 is so rude." Have they actually been rude, or have they just used different communication skills to what you would expect? Authentically Emily sums up the reasons why autistic people are wrongly considered rude here.

"She's being really difficult." What do you mean by this? Difficult to manipulate? Is she just responding to an expectation that you have placed on her? Read this about why non-compliance is a social skill. Heck, go all out and get yourself the t-shirt. Click here for info.

Be really specific about what has happened with a service user when speaking about them to other staff, as opposed to passing on your judgement of the situation. Consider the impact this will have on how they might be treated.

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ID: autistic meter, with red, sad face at 'severely autistic' end, and green, happy face at 'mildly autistic' end.

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The other problem with viewing the spectrum as a straight line is that we end up wrongly categorising autistic individuals with labels such as 'high functioning' and 'low functioning'.

Being a 'high functioning' autistic person simply means you are able to communicate verbally and have an IQ above 70. Regarding a person's ability to function based on their use of verbal communication or intellect is an ableist view that can deny 'low functioning' autistic people access to a 'normal' life. On the flip side, 'high functioning' autistic people might be denied access to the support they need since they are considered to be 'mildly' autistic. Many 'high functioning' autistic people do not function at all well in a world that has not been designed for them, and many 'low functioning' autistic people are able to break barriers and enjoy life with the right support.

We don’t need to define how autistic somebody is just as we don’t need to define how neurotypical somebody is. The above points regarding the spectrum and functioning labels are explained well in this TED talk by autistic writer, Carrie Beckwith-Fellows - click here for video.

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ID: dark green circle with pink lettering which reads, 'Be kind and compassionate.'

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Kindness is the cornerstone of good care. However, society has a very neurotypical idea of what it means to be kind.

Whilst it's important to be kind, it is also important to be flexible in how we demonstrate or interpret kindness depending who we are caring for.

In neurotypical people, kindness is often shown and appreciated through:
Smiling, touch, eye contact, talking, diplomacy, inference, euphemisms.

In neurodivergent and particularly autistic people, kindness is often shown and appreciated through:

Space, quiet, honesty, integrity, explicit language.

The type of kindness everyone values: non-judgement, understanding, respect, advocacy.

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ID: a rainbow colour wheel, with 'The Spectrum' written at its centre, and each shade becoming darker the further it is from the centre.

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What is the autism spectrum? (Hint: it's not a straight line)

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What is the autism spectrum? (Hint: it's not a straight line)

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There are some misconceptions when it comes to understanding the autism spectrum, as it is often considered a straight line with 'barely autistic' at one end and 'severely autistic' at the other. This is problematic, not least because it can lead to the assumption that we are all a little bit autistic. This response can be quite dismissive of the challenges autistic people face living in a neurotypical world and could suggest that autistic people just aren’t trying as hard as everyone else.

It is understanding that people feel this way though, since autistic traits are human traits. For example, all neurotypical people likely have experience of feeling awkward in a social situation, of finding noise overwhelming or of having a 'SPIN' (special interest). It's the intensity and frequency of these experiences that makes them autistic traits, for example, feeling crippled by social anxiety, perceiving noise so acutely it can feel painful, being unable to focus on anything other than your current interest. So it's better to consider the spectrum as a wheel, with sections for different autistic traits all the way around the wheel and with different autistic people experiencing different traits to a greater or lesser extent. Not all autistic people have all autistic traits.

None of the traits on the spectrum are inherently bad or wrong, but many of them make existing in a neurotypical world challenging. In their TED talk, 'Why everything you know about autism is wrong,' Dr Jac den Houting explains the spectrum and how autism and disability are not negative or bad. Click here for video.

The purpose of the spectrum is to illustrate the diverse nature of autism - autistic people are as different as neurotypical people. If your experience of the traits on the spectrum doesn’t significantly impact on your daily life, you are not autistic and therefore not on the spectrum. Otherwise it would be a bit like saying, “we’re all a little diabetic” because we all have felt low on energy when hungry before, or “we’re all a bit narcoleptic” because we know what it’s like to feel tired during the day.

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Autism is considered a hidden disability. It might not even be documented in an autistic person's medical notes. Not all autistic people have a diagnosis and they might not feel able, comfortable or inclined to share that part of their identity with you. They may not even know they are autistic themself.

You don't have to know somebody is autistic to be able to meet their needs. If you are doing something that might help an autistic person, you are doing something that could help any person.

Official statistics show that around 1 in 22 people are autistic, you can read more here on page 4 of this booklet from the Autistic Girls Network. The chances are, you are regularly caring for an autistic person without knowing.

A yellow sunflower on a green background (often on lanyards and pins/badges) represents hidden disability.

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ID: white male in shirt with pen, in 'mansplaining' stance, saying, 'Let me tell you how awful autism is and how it affects people who look like me.'

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We've been listening to the wrong voices

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We've been listening to the wrong voices

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So, one of the biggest barriers to diagnosis for the people we support in the perinatal period is the wrong assumption that autism is a white male condition. That, in part, comes down to the lens autism has been studied through. Up until very recently, the voices we learnt from were allistic white males'. They are still often the loudest voices in the metaphorical room.

Let’s look at two of the best known ‘autism experts’ for starters:

Simon Baron-Cohen, British psychologist, came up with a notion called ‘theory of mind’ to explain how autistic people have no concept of other people’s feelings. His studies were significantly flawed and his claims have been disproven. Despite this, his theories have fed the misconception that autistic people do not experience empathy, and this falsity has been so well spread it is hard to shift.

Tony Attwood, who claims on his website to be one of the world’s foremost experts on the subject, still uses the term Aspergers (calling the language autistic people speak ‘Aspergese’), uses functioning labels (more information on why this is harmful in the 'Understanding the spectrum' column of this Padlet) has been criticised for using deprecating ‘humour’ towards autistic people during his talks and is transphobic. It also took him 30 years to realise his own son is autistic (nothing wrong with that as such, but it doesn't instil faith in his expertise).

I guess we could learn instead from mainstream media. Anybody want to hear from Paddy McGuinness for a different perspective?! (Paddy McGuinness is an allistic, white male celebrity whose three children are autistic. He has faced criticism from the autistic community for choosing to not tell his children they are autistic despite widely broadcasting how difficult it is to raise them).

Temple Grandin, an autistic female, is a prominent voice on autism. Fantastic! Well, not entirely. It seems she has been fed an ableist narrative throughout her life which she now imparts on others. Just how some might argue Priti Patel is not a good spokesperson for people of colour and Caitlyn Jenner is not a good spokesperson for trans people, some might argue Temple Grandin is not a good spokesperson for autistic people. In this blogpost, click here, Cassandra Crosman provides a relatively balanced view of both the help and harm Temple Grandin has done for the autistic community.

So who do we listen to? Definitely listen to autistic people, but be mindful of those whose story is one of how therapy transformed them. Be mindful some autistic people are dealing with a lot of internalised ableism and have been conditioned to think their autism is wrong and needs fixing. Be mindful that non-speaking autists face bigger barriers to being heard and rarely have a platform, their voices can mostly be found in quiet, less mainstream areas.

Seek everyday autistic voices as opposed to ‘success stories’ where possible. Or listen to those who are proud of being autistic and advocate for the rights of all autistic people.

If you are after a progressive autistic voice, Hannah Gadsby is well worth checking out. In her standout stand-up show, Douglas, she speaks of her experience of autism and ableism. Her comedy is somehow thought-provoking, relaxed, hard-hitting, clever and funny all at once. Click here for a clip of her talking about receiving an autism diagnosis.

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Explain why each step of the instructions is necessary.
Authentically Emily describes her experience of receiving instructions here and why some autistic people struggle with instructions.

The following might help when it comes to giving instructions:
1) give instructions one at a time
2) be very specific
3) consider which different formats you could use to present instructions and ask which they would prefer - e.g. spoken (recorded), written, pictures, videos, flowcharts, online or paper?

Becks Harper gives lots of valuable recommendations in an article here. She suggests asking people if they prefer having information presented as 'what to do' or 'ideas to try'.

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ID: purple circle with 'challenging behaviour' typed in centre.  The word 'challenging' has been scribbled out and replaced with handwritten 'challenged'.

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Changing the language surrounding behaviour could help us reframe our understanding so it is less about the individual and more about the environment or situation.

If instead we used the term ‘challenged behaviour’, as opposed to 'challenging behaviour', we recognise that the person is not being challenging but is being challenged. Then we can work to fix the situation as opposed to fixing the individual, which will hopefully more often result in removing the problem as opposed to removing the person.

Always assume the person is doing the best they can in the moment, and don't try to interpret their behaviour based on what the motive would be for you to behave in that way. Judy Endow explains this through her autistic experience here.

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Autistic people are far more likely to be un- or under-employed (see further posts below).
Ensure they are receiving all the benefits they are entitled to.

Pregnancy and parenting benefits: click here

Disability benefits: click here

More information: here.

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Local support

Click here for more information.

Facebook groups

Autistic Parents' Group: click here.

Autistic breastfeeding, chestfeeding and bodyfeeding parents: click here.

Books

Lana Grant, From Here to Maternity: click here.

Sarah Hendrickx, Women and Girls with Autism Spectrum Disorder: includes a chapter on pregnancy and parenting, click here.

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If you are autistic and feel something should be removed or something important is missing from this Padlet, please get in touch.
May Langan: may.langan@nhs.net

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Before you question how odd neurodivergent behaviour is, make sure you question how odd neurotypical behaviour is.
This post from Authentically Emily provides a useful step-by-step guide on some essential, unspoken neurotypical rules: click here for post.

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ID: pink circle with large, black lettering that reads, 'DIS ORDER'.

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How autism is pathologised through language

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How autism is pathologised through language

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Autism has been highly,  unnecessarily and harmfully pathologised through language. Autism is presented as a disorder, characterised by a long list of deficits, weaknesses and problems that suggest being autistic is wrong. Seems odd that autism is characterised as a disorder, when most autistic people are way more ordered than neurotypical people. We could just as easily frame neurotypical traits with this negative slant. In fact, autistic YouTuber, Yo Samdy Sam, has done just that:

“I’ve discovered this new disorder, Neurotypical Spectrum Disorder. People who are suffering with or afflicted with this disorder often have poor attention to detail, they might have an obsession with meaningless small talk, social status and ritualistic exchange or social grooming. They may demonstrate a lack of interest in exploring their favourite topics deeply. They will take part in many activities at once, a.k.a ‘multitasking’, at the expense of all of them. They have a linear thought process and an inability to think outside the box on a daily basis. They will not pet cats on the street.” Click here to watch her full video about depathologising the autistic experience.

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ID: a black person wearing loungewear lies on a pillow while cuddling a bear, both have closed eyes. The wording reads, 'Autistic and proud.'

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Perhaps it's not surprising that some neurotypical people, possibly even some neurodivergent people, might consider autism to be something negative since it is so often presented as a disorder and a list of deficits and defects.

The challenges autistic people face are not a result of being autistic, but a result of having to navigate a world designed with the opposite of 'you' in mind.

In this post, Authentically Emily shares some of the lesser-documented autistic traits she has that make her proud to be autistic: click here for post.

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We don't need to find euphemisms for disability, like 'diff-ability'. The Neurodivergent Teacher covers this well in her post here.

While we are on the subject of disability language, avoid the use of 'able-bodied'. The term 'non-disabled' is more appropriate.

In this article Katie Munday explains why 'normal' is not as aspirational as it might seem and why people have a right to be proud of their disabled identity. Click here for article.

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Identity-first language vs Person-first language

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Identity-first language vs Person-first language

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The autistic community largely prefer identity-first language (e.g. autistic person) as opposed to person-first language (e.g. person with autism). Autism is an important and intrinsic part of a person's identity, just like being gay or being Spanish might be. We don't say 'person with gay' or 'person with Spanish' though.

This post explains how person-first language came about and why it isn't appropriate when it comes to speaking about autism. Click here for post.

This is a really comical and clear one-minute video by Kit Autie that sums up the IFL point nicely: click here for video.

If an autistic person tells you they prefer person-first language, respect their wishes and use their preferred language when communicating with them. As a general rule though, go for identity-first language.

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ID: dark green lettering reads, 'Some of the doctors on the ward are autistic, did you know?'

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Besides the race and gender stereotypes, there are other misconceptions around what autism is and what it 'looks' like.

Another harmful assumption is of the intellectual or creative ability of autistic people. There is an expectation that autistic people have a superpower, are gifted, are a 'savant', have some kind of exceptional talent or are at least intelligent enough for medical school.

You'll often hear people speak about how some of the greatest minds are autistic: Albert Einstein, Charles Darwin, Bill Gates, Steve Jobs, that NICU doctor... As if that's what makes autism acceptable. Having a gift is what makes autistic people worthy. And what is that gift? The ability to produce capitalist value.

Probably some of the cleaners on the ward are autistic, too. Do you know why? Because autistic people tend to place less importance on social status than neurotypical people, they are often very ethically minded so agree with the values of the NHS and they want to work in a rewarding environment but feel more comfortable in a role that doesn't place lots of expectation on them to interact in a very particular and neurotypical way. Not to mention that they are more likely to be denied access to education so might not have the qualifications to work in a 'more valued' position. Think before you place any importance on workplace hierarchy in the hospital. We all play a valuable role in providing optimal care.

Don't burden autistic people with this fallacy of being exceptional. Trying to fit into everyday neurotypical expectations is hard enough as it is without removing their entitlement to be average.

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Click here for more information.

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(this list has been adapted from the Abbreviations and Acronyms file on the Autism Inclusivity Facebook Group)

AAC: Augmentative and Alternative Communication – i.e. communication methods other than speech.

ABA: Applied Behavioural Analysis, the go-to, conversion-style therapy for autistic people that is widely documented by the autistic community as harmful and can lead to PTSD and anxiety disorders. ABA techniques are not often overtly labelled as such and are instead misleadingly disguised under other terms, e.g. Positive Behaviour Support.

Ableism: discrimination against disabled people and/or the belief that non-disabled people are superior.

ADHD: (formerly also called ADD) Attention Deficit Hyperactivity Disorder, a cognitive profile that includes high energy and impulsivity. Incorrectly often considered a disorder that affects only young boys, it can affect anyone and is a lifelong brain difference.

AFAB/AMAB: assigned (gender) female/male at birth. Not considered an empowering term by all since ‘assign’ sounds relatively final and suggests medical professionals have the power to determine one’s gender. Documented female/male at birth is perhaps more appropriate, though not commonly used and AFAB/AMAB are generally accepted terms. Although we are often given a gender at birth, this should not be taken as a given.

Allistic: non-autistic person. May or may not be neurodivergent (for example, has ADHD only). The opposite of ‘autistic’ from the Greek 'allo', meaning other or 'over there'.

Aspie: (use discouraged) someone with "Asperger's syndrome" which is an outdated label for autism named after a Nazi doctor.

ASD: Autism Spectrum Disorder – the term most often used by medical and health professionals to describe autism. Also related to the euphemism, to be ‘on the spectrum’. The autistic community largely contest the accuracy and use of 'disorder' and prefer to simply use the term 'autism'.

Autie: autistic person.

Autism: a lifelong, neurological difference that affects how a person thinks, feels, interacts with others and experiences their environment.

Comorbid: several conditions occurring in the same person. For example anxiety and PTSD or cPTSD.

Deadname: call (a transgender person) by their birth name when they have changed their name as part of their gender transition.

Disability: according to the Equality Act 2010, you are disabled if you have “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” Disability is not necessarily visible. People are often more disabled by their environment (too noisy, crowded or otherwise inaccessible) or by other people (unwilling to make reasonable adjustments) than they are by any physical or mental differences.

Echolalia: repetition or quoting of words or phrases in situations where it is not expected by neurotypical people.

Ehler’s-Danlos Syndrome: a co-occurring condition with autism featuring loose joints, joint pain, stretchy velvety skin, abnormal scar formation, and more. Multiple types.

Executive Dysfunction: a term which describes day-to-day challenges with planning, time management, organization, and completing tasks. A common trait in neurodivergent people which can create a barrier to healthcare.

Functioning Label: any label other than autistic that is used to describe the "severity" of someone's autism. For example: Level 1, severe, low-functioning, Aspie.

Gender Dysphoria: a deep sense of unease that a person may have because of a mismatch between their biological sex and their gender identity. This can be so intense it leads to poor mental health and negatively impacts on daily life.

IFL/PFL: Identity-first-language (e.g. autistic person, preferred by most autistic people) / Person-first language (e.g. person with autism, preferred by few).

Intersex: someone whose biology is neither strictly male nor female. AFAB/AMAB may not apply if being intersex was obvious at birth or if an arbitrary label was given.

LGBTQIA+: lesbian, gay, bisexual, transgender, queer/questioning (one's sexual or gender identity), intersex, and asexual/aromantic/agender. The 'plus' represents further identities such as demi-romantic, pansexual and more. Essentially this acronym represents anybody who does not identify as cisgender (a person whose gender now is the same as what was presumed at birth) and heterosexual.

Masking/camouflaging: suppressing natural autistic behaviour, like stimming, and engaging in uncomfortable neurotypical behaviour, like eye contact, in order to fit in and be treated with respect. Very emotionally and physically draining.

Non-binary: someone who does not define themself by a strictly male or female gender identity. Often (but not always) someone who uses gender neutral pronouns like they/them.

Neurodivergent (ND): having some significant, permanent cognitive difference that impacts on communication, thinking, behaviour etc. Examples: Autism, ADHD, Dyslexia.

Neurodiversity: all humans are neurologically diverse, whether they realise that or not, knowledge of which is a gift slowly being endowed on humanity by neurodivergents to a large degree.

Neurotypical (NT): not autistic or neurodivergent.

Non-speaking: someone who doesn't speak with their mouth but may use other forms of communication such as Makaton, BSL, typing, other AAC.

Non-verbal: (use discouraged) someone who doesn't speak with their mouth, or more broadly, someone who "can't talk". Not preferred because of its binary connotations verbal/non-verbal being the only two categories and it ignores AAC.

NVLD/NLD: for Non-Verbal Learning Disorder/Disability.

PDA/ODD: Pathological Demand Avoidance. PDA is increasingly, but not universally, accepted as a profile that is seen in some autistic people. It describes those whose main characteristic is to avoid everyday demands and expectations to an extreme extent.

PTSD: Post-Traumatic Stress Disorder is a psychiatric condition occurring in some people who have experienced trauma. It causes feelings of stress, fear, and panic even in safe situations. PTSD risk is increased after undergoing ABA therapy. cPTSD or c for complex, is the type usually associated with autistics who have cumulatively experienced repeat or multiple traumas, i.e. not as easily explained as being shelled in a war zone.

Rejection Sensitive Dysphoria: a powerful emotional sensitivity and pain triggered by the perception that a person has been rejected or criticized by important people in their life.

SPD: Sensory Processing Disorder, an unofficial, broad label assigned to people with sensory processing or behavioural differences. Often comorbid with autism but not always.

Special Interest (Spin): something an autistic person is extremely interested in and will often gather a lot of knowledge and/or paraphernalia related to. An autistic person can become very consumed by their special interest in a different way to which a neurotypical person would engage with a passion, hobby, pursuit, area of fascination, etc. Special interests bring autistic people great joy.

Stim/Stimming: short for ‘self stimulatory behaviour’, a self-soothing action such as rocking, hand-flapping, humming, echolalia, chewing, etc. Stimming often helps autistic people regulate and suppressing this behaviour is detrimental.

Stim toys/tools/fidgets: items used to stim and self-soothe by enabling sensory input.

Trans: abbreviation of transgender. Trans is an umbrella term to describe people whose gender is not the same as, or does not sit comfortably with, the sex they were assigned at birth. Trans people may describe themselves using one or more of a wide variety of terms, including (but not limited to) transgender, non-binary or genderqueer. Not all trans people will want to transition.

Transphobia: The fear or dislike of someone based on the fact they are trans, including denying their gender identity or refusing to accept it. Transphobia may be targeted at people who are, or who are perceived to be, trans.

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If somebody uses a different name to that on their legal records, make sure this is very clear on their medical records to avoid 'deadnaming' them. If you have an electronic system for signing into appointments, consider adding the option for them to write their preferred name and their pronouns.

Ensure the language you use is inclusive. Additive language is preferable, e.g. women and birthing people, mothers and birthing parents. BSUH NHS Trust have useful guidance on this here. Page 16 of the document has suggestions of inclusive terms to use. They also have a useful leaflet for trans and non-binary patients here.

If communicating individually, ask them what terms they prefer, e.g. when demonstrating with a knitted breast, "I would call this the breast and this the nipple, what would you call them?" Then use the terms they prefer.

This document explains how to avoid misgendering using pronouns and tips for getting it right: click here for document.

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This guide, using case examples, covers what implicit bias is and how to address it: click here.

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Continuity of care offers a greater opportunity for building a relationship (way more effective than eye contact!). With continuity of care, the healthcare professional can learn what is normal for that person to allow them to spot if they aren't quite themself. The autistic person is more likely to be able to communicate with somebody who feels familiar to them.

When that same healthcare professional sees them in the waiting room, they recognise each other which removes the need to call out, which can be quite startling and not pleasant to be waiting for.

Consider their partner, loved one or chosen support partner as a carer and be flexible on usual rules such as attending appointments and visiting hours.

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- columns are titled to make searching easier

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Image descriptions (labelled as ID) are used under each image on this Padlet. There is a character limit for captions so the descriptions have been restricted in length.

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ID: comic strip from Introvert Doodles, showing somebody job searching on their phone, with all jobs requiring extrovert skills.

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Most high salary jobs demand 'good people skills'.

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Those who are both LGBTQIA+ and autistic are described as existing under 'the double rainbow' - that of the pride flag and that of the spectrum.
"The term exists because of one reason: a greater percentage of the autistic population identifies as LGBTQIA+ than the non-autistic (neurotypical) population." (Erin Ekins, in her book Queerly Autistic - well worth reading).

Click here to view a glossary of LGBT+ terms, though you do not need to be fluent to be able to support somebody appropriately, just non-judgemental. It is fine to say if you are not familiar with something somebody has shared. If they have used a term you do not understand you could simply say, "Tell me what you feel it is important I know." Be appreciative of their openness but don't expect them to teach you.

When we consider that gender is simply a list of unwritten social rules dictating how we must act, feel, dress, smell, present, behave, stand, speak, work, eat, love and just be is it surprising the autistic community is vastly gender fluid?

Humans have been around way longer than gender. We made gender, it's not something naturally occurring. Our ideas around gender vary throughout time and cultures and having a gender binary is neither superior nor worthwhile.

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Making eye contact is a neurotypical communication behaviour. Many neurotypical people experience frustration if somebody does not look them in the eye while they are talking. 'Good' eye contact is promoted as an important communication skill and is often encouraged in health care settings to help build rapport with patients. Not making eye contact is considered rude in the neurotypical code of social rules. Eye contact is often enforced in social situations (e.g. at school, "Eyes on me when I am talking, please.")

Most autistic people find the intensity of eye contact uncomfortable or even painful. They are likely to be able to listen and understand better when they feel free to land their eyes somewhere else.

In this post various autistic people share their experiences of what it feels like to make eye contact: click here for post.

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"According to the Office for National Statistics' Outcomes for disabled people in the UK report, only 21.7%* of autistic people are in any form of employment, the lowest employment rate of any disability category."

Click here for source and more information on the autism employment gap including stats, why autistic people fall through the cracks and what you can do to help.

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Is it really surprising that autism has the lowest employment rate of any disability category? All too often the onus is placed on the autistic individual to behave neurotypically instead of the onus being on employers to understand differences, value diversity and be willing to meet the needs of those working for them.

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ID: dark purple lettering reads, 'The diagnostic model for autism is a male model. Autistic people AFAB are often undiagnosed or misdiagnosed.'

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What does this mean for perinatal healthcare workers? Many of the autistic women and birthing people we care for might not have a diagnosis or might be unaware they are autistic. Self-diagnosis is valid. If somebody tells you they are autistic, they are autistic. You do not need to find proof in their notes. Click here for more information on the barriers to gaining diagnosis in AFAB people.

This paper explores why, through diagnostic overshadowing, people assigned female at birth are misdiagnosed. Click here for paper.

Barriers to diagnosis for people of colour

Culture can play a part in how autistic traits present. Racist stereotyping can prevent people spotting traits (e.g. "she's a difficult black girl from an uneducated family"). Autism has been studied by white people through a white lens. There are many reasons why people of colour are less likely to receive diagnosis. This article explores this problem and the role white privilege plays in diagnosis: click here for article.

This infographic from Nadia @autisticblackgirl highlights some of the challenges of being black and autistic: click here for infographic.

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This video by Jessica at How to ADHD explains more about neurodiversity and how autism is both natural variation and a disability: click here for video.