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Autism Awareness and Understanding

Autism is part of everyday life. Yet even though 1 in 100 people in Scotland are autistic, it's often misunderstood.

Autism is a neurological difference; put simply, autistic brains work differently to non-autistic brains. They see and experience the world differently to non-autistic people. It's important that we all understand more about autism - both what it is, and what it is not.

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Different Minds, One Scotland is committed to building better autism awareness and understanding, and recognising the value of a neurodiverse Scotland.

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Monotropism: One Step at a Time (autism)

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How does regulation develop?

The ability to regulate starts to develop when we are a baby. Long before we can self-regulate we need help from our caregivers. When babies start to show distress, their caregivers swaddle, carry, rock and feed them. Caregivers should provide what is required to help the baby to organise their arousal. As these needs are met the infant learns patterns and rhythms. They learn that when they hear mum or dad's footsteps, help is on the way.

Regulation develops over time and with experience. Each time a child experiences dysregulation and is able to regulate, they strengthen their ability to do this and they get to know what strategies help them. This process starts with co-regulation.

Co-regulation

Co-regulation is when someone else helps another individual to regulate. We usually think of adults helping children. However, adults help adults all the time. Think about when a friend or family member was upset and you gave them a hug. Or, a time when they were angry and you listened. One unique feature of mammals is that we frequently co-regulate. You will see a mother cat co-regulate its kitten through licking, but you would never observe reptiles such as snakes or crocodiles doing this with their babies!

Toddlers need huge amounts of support from their caregivers to regulate and self-soothe. Whilst they are starting to be more a bit independent, the regulation centres of their brain are still developing. Sarah Ockwell Smith suggests that it isn't until after a child's fifth birthday that their brain is developmentally mature enough for them to start to self-soothe or self-regulate. Parents of teenagers would also argue that hormones severely disrupt this skill.

Regulation with the help of caregivers is what teaches children to self-regulate as they get older. They learn what they experience. Co-regulation helps them to develop the brain networks and strategies they need to self-regulate.

Self-regulation

Self-regulation is the ability to stay regulated without the help of others. It is the ability to use your own strategies to either calm down or energise. Some individuals need more help to learn how to self-regulate than others. Often individuals with ADHD and ASD need more support to learn to self-regulate. Sensory regulation strategies can help with self-regulation. As can cognitive strategies. We will explore these further below.

Emotional regulation

Emotional regulation refers to the ability to regulate our emotions. Toddlers and teenagers find this difficult. For toddlers this is because they haven't yet established the language and brain connections to enable them to regulate their emotions. Teenagers find this more difficult as their hormones and brain connections and changing. They need time to get used to these changes.

Neurologically the front part of our cortex (our frontal lobe) is responsible for emotional regulation. The connections to this part of the brain continue to develop into adulthood. The ability to regulate emotions improves as these connections strengthen. Again, some individuals, including those with autism, need more support to develop these connections.

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Sensory regulation strategies - how you can use them to help your child.

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Sensory regulation strategies are useful tools to you can use to help individuals to calm down or to energise when they need to.

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Monitoring our progress I'm really excited to be able to share the preliminary review of our online course Sensory Processing with GriffinOT. I was able to present these results at the Royal College of [...]

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Northumbria Healthcare NHS Foundation Trust Sensory Processing Service

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Resources - Northumbria Healthcare NHS Foundation Trust Sensory Processing Service

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Resources and short video demonstrations to support a range of daily activities such as dressing, teeth brushing and sleeping.

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One of the biggest things to understand about autism is that autistic people literally experience the world in a different way. Some autistic people have much more acute hearing than others. Many autistic people are more sensitive to taste, touch, smell, some notice small details that other people miss. A number of autistic people are less sensitive to these things too!

Autistic people are often told they are being overly sensitive when they talk about their personal experiences. We often have our sensory experiences negated - that's not too scratchy, not too hot, not too cold, not too spicy. It is important to remember that we are almost certainly experiencing the environment differently from the others around us. If we say something feels scratchy, it's very probable that it does feel too scratchy to us, even if it feels ok to others.

There are 8 basic senses that we all have:

Visual (sight)

Auditory (sound)

Gustatory (taste)

Olfactory (smell)

Tactile (touch)

Vestibular (body movement)

Proprioceptive (awareness of your body in relation to surroundings)

Interoception (sense of what's happening inside your body)

Sensory Sensitivity
A sensitivity to something can mean many different things too - sensitive to touch could mean that you find it painful, or that you seek it out, or even that you feel touch after it has ended. It is also possible for someone to be highly sensitive to some senses, and not very sensitive to others.

These sensitivities are subject to change throughout a lifetime too. Periods of extreme stress, changes in hormones such as puberty, pregnancy or menopause can all influence our sensitivity to sensory input or change sensory preferences.

What does that mean in practice?

This could potentially mean:

Increased sensory sensitivity, e.g. higher pitched noises may be even more difficult than usual, more sensitive to touch or visual input than before.

Decreased sensitivity, e.g. poorer interoception meaning more toilet accidents and/or decreased awareness of being hungry, needing to turn up TV more to hear it.

More sensory seeking, e.g. needing to spin, rock, swing, using weighted blankets more often, or wanting spicier food.

Increased need for sameness when it comes to sensory input, e.g. wanting to eat the same food more frequently, only use certain soaps or fabric softeners, and increased anxiety when those options are not available.

Ensuring that there is good access to whatever sensory inputs are calming is important for autistic people of all ages, particularly during times of stress or change is really important. It is equally important to know what sensory input will increase anxiety.

Developing a sensory profile helps to identify what will quickly support an autistic person when stressed, and it may be worth sharing with others in the household too. Some autistic people put together their own sensory boxes where they can easily access calming items when required.
Filtering Out Sensory Input
Being autistic means that we are more likely to have issues filtering out sensory information, which can lead to being overwhelmed. Most non-autistic people become aware of some sensory input, process it, and then they can often filter it out. Low level constant noises like the hum of their laptop while they are working, or even the sensation of sitting on a seat becomes filtered out. The brain stops processing that input.

Autistic people often cannot do this, so background noise like the hum of the laptop still takes up processing space in our brains.

In many typical households there are a number of things you may be hearing at any one time:

the TV could be on

someone playing a video game either handheld or in another room

someone else drawing a picture

noise of a running tap while another person is washing dishes

maybe a neighbour playing music too

washing machines or other household equipment being on

There is a whole lot of noise to be processing at the same time. And those are just the noises. Add in the smells, and all the other sensory input and that is a huge amount of sensory information to be processing. Dealing with so much all at the same time can be overwhelming and very tiring.

"When there's too much sensory information going on, I find it hard to process any of it, and may need some space to let my mind relax" - Marion McLaughlin, CEO Autism Understanding Scotland
Supporting Autistic Sensory Differences
It's important that everyone's sensory needs are acknowledged and respected. It will make everyone feel more confident and secure. If the autistic people in your life can discuss their sensory needs with you, listen and accept they may experience things differently. Talking with other autistic adults, reading their blogs and books, can be a good way to help improve your understanding of sensory differences too. Many autistic adults are unaware of the extent of their sensory differences until they start considering their sensory experiences and start discussing them with others.

Some of our sensory differences can be tricky for other people to understand. If you have a loved one who doesn't want to hug, it's possible it's because the sensory information is too intense - the texture of your clothes, skin, and hair all at the same time, it's a lot of different things to process. There are also the smells - the smell of your shampoo, washing powder and any products on your skin or aftershave, perfume, your breath. Most people don't consider all those aspects, but for some autistic people they are impossible to ignore.

Respecting everyone's boundaries and finding ways to express affection that they can deal with will make them feel cared for and valued. You may also have an autistic person who wants to hug or have physical contact almost constantly - which can be tricky when you have things you need to do. Items like rash vests, back packs, weighted vests can all provide that sensory feedback needed to feel secure. It might take some trial and error to see what works best, but we behave the way we do for a reason, so finding the reason and investigating sensory needs allows you the chance to find other options for support.

Some parents have expressed concern that in supporting these sensory needs - for example giving their child ear defenders or a sensory toy - they are creating a barrier between the child and the world. That they are less able to interact with the world. Sometimes wearing ear defenders does look a little different, sometimes people may stare. Sometimes you may have people asking why they are wearing them.

Questions are ok, and if you want to answer them that's fine (although you are under no obligation to answer questions from strangers). We would argue that if by wearing that piece of kit - the ear defenders or chewing jewellery, or any other sensory equipment - it means your child is able to be out in the world, then that the sensory equipment is a gateway to the world, and not a barrier to it. If that piece of equipment helps them to avoid a crisis point, then all the better.

All of us here at Autism Understanding Scotland use all kinds of sensory equipment - from ear defenders to weighted blankets to fidget objects. We participate in meetings with them, take them shopping, use them when socialising. They help us to support our sensory needs and boost our quality of life.

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One of the biggest things to understand about autism is that autistic people literally experience the world in a different way. Some autistic people have much more acute hearing than others. Many autistic people are more sensitive to taste, touch, smell, some notice small details that other people miss.

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What is Know Your Normal?

In 2017 the Youth Council and myVoice volunteers unanimously decided that they wanted to run a campaign around mental health.

The Know Your Normal campaign aims to reduce the stigma around mental health and create resources for autistic young people to work out and understand what their normal is.

The research behind Know Your Normal

Youth Patrons were involved in collaborative research with University College London (UCL) Centre for Research in Autism and Education (CRAE) to produce a research report about the mental health struggles that many autistic young people face and the care that they have received.

Read the Youth Patrons' report of their experiences and research and read the full research report, which was published in the Autism Journal in 2018.

Know Your Normal toolkit

Alongside the report, the young people designed a tangible Know Your Normal toolkit to help young people outline what their 'normal' is so they can explain to those who support them when they aren't feeling themselves.

Know Your Normal youth lecture

Youth Patrons also hosted a lecture to talk to professionals, young people and parents about their Know Your Normal toolkit and the research findings.

At the lecture, hosted on 27 March 2017 the Youth Patrons:

presented the findings of their joint research with CRAE about the experiences of mental health and wellbeing of autistic young people

shared their stories of what 'normal' means to them

presented the resources they developed to support autistic young people to tell people around them what 'normal' looks like to them

offered opportunities to ask questions of our expert panel.

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What is Know Your Normal? In 2017 the Youth Council and myVoice volunteers unanimously decided that they wanted to run a campaign around mental health. The Know Your Normal campaign aims to reduce the stigma around mental health and create resources for autistic young people to work out and understand what their normal is.

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Molehill Mountain is an app to help autistic people understand and self-manage anxiety.

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The podcast that makes you think about how you think.

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When I feel overwhelmed

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Children can often feel overwhelmed by a variety of things. It can be because of school assignments, issues with friends, family issues, struggle with emotions, or sensory processing challenges. We wanted to create something specifically for children, so this short video, When I Feel Overwhelmed will give self-regulation strategies for kids.

One thing that we want to make sure we provide is strategies specifically for children when it comes to sensory overload and sensory processing. A lot of the information out there is geared towards adults to help children, which is also important. But if we can create things specifically for children to understand their sensory processing and ways to self-regulate, that is a powerful thing!

We created a very short, brand-new video, specifically for children when they feel overwhelmed. If you've taken our Overcoming Sensory Meltdowns course, you may recognize some of the things we say in this video.

You can also watch the video here on Facebook or on the YouTube embedded video below.

Also, here is a text transcript of what we said in the video.

Hi Kids, let's talk about when you feel overwhelmed.

Do you ever feel overwhelmed by something or a situation?

Maybe there is too much noise and you've had enough.

Maybe you feel nervous about doing something new.

Or something happened that made you feel upset and angry.

When you feel angry or upset, do you ever feel like things are out of control?

You are not alone! Other kids feel this way too!

In fact, some kids told us how they feel when they don't feel in control of their bodies.

Here is how some of them described it:

"So itchy!"

"Going to explode!"

"Hulking out"

"Boiling over"

"Having a me tornado"

"Feeling like there is a bee storm all over my head"

Do you ever feel like that?

When you feel this way, what can you do to help yourself feel better and more in control of your body again?

I'm glad you asked! Let's talk about some of those ways now.

1. Get a drink of water

2. Get some fresh air and take a walk or run outside. Make sure you ask an adult first before you go outside.

3. Give yourself a hug

4. Ask to go to a quiet space by yourself

5. Take a deep breath and relax your breathing

6. Roll up in a blanket and read a book

7. Listen to some of your favorite music (with a headset)

When you feel more in control of your body and are ready to talk, talk to a trusted adult about how you are feeling.

Adults, you can find more resources for teaching children about sensory processing and overload at the links below:

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When I Feel Overwhelmed: Self-Regulation Strategies for Kids

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Children can often feel overwhelmed by a variety of things. It can be because of school assignments, issues with friends, family issues, struggle with emotions, or sensory processing challenges. We wanted to create something specifically for children, so this short ... Continued

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The very first thing we need to remember is to help a young person feel safe - remember that experiencing a meltdown is incredibly scary. If someone is upset/ stressed/ having a meltdown, focusing on helping them to feel calm is important as people cannot think logically at this time. Until they feel safe, there is no next productive step.

If a young person is not currently highly stressed or experiencing a meltdown, the Nurture step may not be applicable and you can start problem solving with young people from step 2: Empathise. The Nurture step shares a variety of strategies that can be used to help someone become relaxed in the short term, avoiding crisis.

If you aren't relaxed, this can make a young person more stressed due to the emotional contagion effect. Take the time to calm yourself, don't pretend, most autistic people sense the difference and it can make things worse. If you are calm, they will feel that calmness and feel reassured due to emotional mirroring. This will allow them to use you to coregulate. Remember that even if things are heated right now, they will be ok eventually, and in the heat of the moment a young person may not be able to recognise that, so showing you recognise this by being calm is really helpful.

This includes:

Using a relaxed, comforting posture rather than appearing stiff/ rigid.

Using a calming, caring tone. Speak slowly and softly.

Keep your language simple and clear

Try not to show stress on your face.

Speak in the affirmative rather than the negative (saying "don't do that" doesn't give an alternative option of what to do).

A stressed person is usually trying to communicate something, so show active listening and acknowledge what you think they are trying to communicate.

Make sure to not be 'too' relaxed by joking/ not paying attention as this could make it look like you don't care about their distress. The aim is to look confident that things will be ok.

Use distractions

Distractions are not a 'reward for negative behaviour' as they are sometimes viewed. Distraction should be seen as a positive support tool to help avoid a crisis.

Distractions are also not always effective - offering a distraction can make it feel you aren't taking their distress seriously, but it can also be used to break focus of any stressors, and help a young person to get back on track, so you need to time this right and be creative in how you do it in order to be helpful.

Invite a young person to watch a video, listen to a song or play a game together. Many autistic young people have special interests, so talking about or doing an activity around these can also help give them something meaningful to focus on.

Physical activity can also be really helpful, as people in crisis often really benefit from a 'physical release' of their emotions.

Activities that create a sense of 'flow', where you can focus on it without worrying about other things in life are really helpful. Every young person has different things that can get them into this 'flow state'. It could be computer games, art, a DVD, going on a trampoline, music or just going for a drink.

Be wary of physical touch

When you are in survival mode, your brain is looking for danger and is more likely to perceive things as a threat. Calming touch like a firm hand on someone's shoulder could feel like an attack. A soothing hug could feel like you are being trapped by someone. When you are in meltdown, you are not as rational as you usually are so any things that are normally safe or calming can be perceived as dangerous.

Touch can be a sign of affection, warmth and security but it also can be a sign of threat and hostility

When a young person is distressed, it is helpful to avoid stress wherever possible, unless the young person communicates that they would like physical touch in order to feel more supported (this happens the minority of the time)

Keep your distance

Everyone has a 'comfort zone' of how close they are comfortable with people being to them. This changes depending on the person and the environment. A young person may be ok with a parent sitting right next to them but may struggle to sit next to a stranger on a bus and feel comfortable.

When a person is distressed, the range of their personal safety zone can change massively. As a result, being too close to them can feel threatening, and so they will require more interpersonal space. Try and stay at least 2m away if someone is struggling, unless that person requests/ shows they need physical touch/ comfort from you. Sometimes if someone cannot tolerate you being in the same room, waiting outside and calmly reminding them that you are there could help them feel safer.

If someone is in 'flight mode' and you get too close, this may put them into 'fight mode' which is not safe for you.

If someone is in 'fight mode', it is also helpful to keep your distance so you can keep yourself safe.

Slow your movement down

Fast movements can be perceived as threatening, but they can also be overloading as your brain is trying to work out their intentions, but is currently unable to. This can activate more fear/ threat. Slow down and be as predictable as possible to show a sense of calmness. When moving, try not to move towards the young person without warning, as they may interpret this as a threat. People often do this in an attempt to calm or reassure a young person, but it often has the opposite effect.

If you feel approaching a young person is really important, let the person know in advance and approach them in a calm and slow manner.

Gestures can be misinterpreted

Laughing can feel like someone is laughing at you. A friendly wave can feel like a taunt.

Gestures are a natural part of human communication that enhance what we are expressing. But be mindful that people may not perceive gestures in the way you expect them to while they are highly stressed. Using just gestures, or just speech rather than both at the same time can be helpful.

Avoid gathering staff

When someone is distressed, there should only be one person speaking/ supporting them at a time as they will find it difficult to process communicating with multiple people at the same time. If the supporter is struggling, then they should swap with someone else, rather than someone interjecting while you are already supporting.

Too many supporters can heighten stress much more. Supporters might feel safer, but this isn't always impactful as it makes the person you are supporting feel more unsafe.

This also increases the 'audience effect' (Strauss, 2016), in which being watched by others whilst in a stressful situation feels like a form of coercive control - this should be minimised as much as possible.

It is helpful to have a second staff member nearby in case they are needed, but they should be out of the line of sight and should only assist if requested by the lead supporter..

Remove other people

The audience effect makes even the right support feel threatening at times. People 'feeling' you are doing the wrong thing and interjecting also means that there may be too much input for the stressed person to process, making the situation worse. It is much easier to remove other people than to remove the distressed person - so try and remove them so you can focus on helping the distressed person become calm/ relaxed.

Trying to remove the stressed person is likely to escalate the situation and is often what leads to physical restraint.

Sometimes, someone in crisis may focus on one person, and that person moving out of the environment and being 'followed' by the person in crisis can also remove the audience effect. But making a stressed person move out of the environment often has a negative impact.

Avoid direct eye contact

Eye contact can be really overwhelming - a lot of autistic people can find eye contact difficult, and this can be amplified when they are highly stressed. Eyes are incredibly emotional, so having to make eye contact with people when you are struggling emotionally can make you feel much worse.

Intense direct eye contact is also used as a way of asserting power and control, so this can lead to a power imbalance. When a young person feels unsafe, one of the best ways to give them a sense of safety is to make them feel they are in control of what is happening.

When you are supporting someone who is highly stressed, try to avoid staring at them and do not force any eye contact. Intermittent eye contact may be ok.

Tactically withdraw from the person

Sometimes withdrawing from a situation can lead to a decrease in stress. We can often get into arguments, disputes or 'stand-offs' with young people.

When this happens, somebody needs to back down, and more often than not this will need to be us. When a young person's brain is telling them they are unsafe, they may not be able to back down, even if they desperately want to.

If you stand down, try not to view this as 'giving in' - it is really important for avoiding distress/ crisis. Reflection, support and learning will be far more achievable when everyone is in a calm and relaxed state.

"When someone is drowning, that is not the best time to teach them how to swim"

- David Pitonyak

Reduce demands

In a crisis situation, verbal demands, requests and boundaries are often triggers to distressed behaviours.

Research shows that nearly two thirds of behaviours of concern were preceded by staff demands/requests (McDonnell, 2010).

If someone is unable to meet our demands, can we remove the demand completely, or at least reduce it for now?

How you word things is also important in whether it is perceived as a demand. Autistic young people in general can struggle with being told "what to do", and instead thrive when given a reason "why" something needs to be done. This allows them to come to their own conclusion, and so reduces external demands

Remove environmental triggers

People who are highly stressed become more sensitive to their environment.

It is really helpful to remove any potential triggers in the environment:

Turning down lights or turning them off completely.

Reducing sounds

Removing ourselves from sight/ the room

Make sure to consider all of the senses.

Having a safe/ quiet space to go to is often incredibly helpful - though it is easier to access this if a safe space is agreed in advance, before a young person reaches a state of distress. This also works better as a proactive tool, where young people can go there freely and use it to pre-emptively avoid stress, rather than using it only as a place to be sent to when they are no longer in control.

Be flexible with the rules

Learning happens when people are calm. Swearing may not normally be considered socially acceptable in many environments, but commenting or focusing on someone's swearing whilst they do not feel in control you may unintentionally make them feel more stressed and overwhelmed. It is helpful to be more flexible with rules now (as long as they aren't putting themselves or others at risk), so you can focus on helping them to become calm as quickly as possible with minimum damage/ impact.

Important Note: While the Nurture step is for when someone is visibly struggling, assume young people who do not show they are struggling may need input too. If someone has an issue then stops interacting with others or avoids the community, the NEST approach is still important ('flight'/ 'freeze' responses are less visible than a 'fight' response but still need support).

If you would like to learn more about supporting young people when they are stressed, visit Studio 3 Low Arousal website.

They also have a range of free webinars around the 'Low Arousal Approach'. Our favourite is from Professor Andy McDonnell on 2nd June 2020.

When should you move on from the nurture step?

The young person is now calmer/ more relaxed, what next?

Straight after the incident, it is likely that all the young person can think about is addressing threat - threat of punishment, exclusion or judgement. Threats like this are common when you're autistic.

The very first communication with a young person after an incident is therefore important to ensure they feel safe and not under scrutiny. You should reassure the young person (and any parents/carers if involved) that they are not in trouble. Following on from this, you should clearly explain that your first focus is their well-being, as well as theirs and others' safety.

You may need to keep repeating this throughout the NEST steps as this supportive approach may be something the young person is unfamiliar with. They may need time to recognise that this will be the approach of supporters moving forward.

When a young person is out of crisis, they may be feeling shame, guilt and embarrassment, but may also have feelings of anger/ resentment about the situation and what happened.

Although they were unable to control their emotions during the incident, some of their actions whilst in meltdown may have been dangerous, frightening to others, or had a negative impact on themselves and others. Therefore, it is very important to work with the young person to fully understand the situation, and to identify actions that can be taken to reduce the chance of this happening again. This is a three step process that is outlined below.

It is important to not work on understanding the situation too soon. It takes at least 45 minutes from crisis for a young person to reach a calm/ relaxed state, but it is often much longer. It is usually ok to wait until the next day to start this process with a young person. As the experience was difficult for the young person, they also may not be able to talk through this all at once. This debrief may be done over a long period of time, and it is really helpful to not push discussion with a young person around this. Use your judgement to consider when they may feel ready to talk about it, or they may let you know when they are ready.

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Understanding Meltdowns | Autism Barriers to Education

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The very first thing we need to remember is to help a young person feel safe - remember that experiencing a meltdown is incredibly scary. If someone is upset/ stressed/ having a meltdown, focusing on helping them to feel calm is important as people cannot think logically at this time.

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What May Assist You Throughout a Meltdown:

Discovering a quiet area

Noise cancelling headphones or earplugs

Having a 'secure individual' to name or go to who will help you to settle down

Something particular curiosity associated that you would be able to interact with

Calming music or meditation

Weighted blankets

Individuals round you understanding

What Different Individuals Can Do To Assist:

Information you someplace quiet

Scale back calls for as a lot as attainable

Take away any nervousness triggers

Give you time and area

Validate your feelings

Communicate calmly and reassure you

Encourage you to floor themselves

Perceive that you could be say or do issues which you wouldn't often

After a meltdown it is very important do not forget that your physique has simply skilled an intense bodily and emotional response. Your nervous system has been in overdrive. Adrenaline can be pumping round your physique.

You would possibly really feel embarrassed or ashamed, however you'll want to now maintain your self to keep away from burnout. You would possibly do that by:

Having a lot of relaxation and sleep

Fuelling your physique with meals

Hydrating with water

Refreshing your self by splashing water in your face

Participating in your particular curiosity

Figuring out the set off and seeing should you can keep away from it subsequent time

Treating your self with compassion

Keep in mind: Autistic adults have meltdowns too. They'll really feel extremely embarrassing and the disgrace that hits afterwards could be horrible. However it's not your fault. Your mind went into overdrive and your physique tried to guard you.

You might be beloved.

#Autistic #Meltdowns #Authentically #Emily

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Autistic Meltdowns - Authentically Emily | The Global Today

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Frequent Triggers Embrace... Autistic Meltdowns - Authentically Emily | The Global Today The Global Today

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www.5pointscale.com was developed to share information about the use of the 5-point scale and other systems to teach social and emotional concepts to children and adults who could use some extra…

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Teach Kids to Manage Big Feelings Through Effective Social Emotional Learning

Over 80% of U.S. public schools reported in 2022 on the negative impact of the pandemic on child well-being and self-regulation. Kids are:

Struggling to manage their feelings and mental health

More disruptive in the classroom

Needing additional social, emotional, and behavioral support

(source: National Center for Education Statistics)

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The Zones of Regulation is a complete social-emotional learning curriculum, created to teach children self-regulation and emotional control.

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Hello! My name is Emily Price (she/her)

I don't provide interventions based on behaviourism and the social-deficit theory of Autism; these practices are rooted in flawed theories and outdated research. As a Neurodivergent-Affirming SLT I do not provide Social Skills Training. We know that these interventions are designed to teach Autistic children to mask and perform a set of socially expected behaviours built upon neuronormative norms of attention and communication. As a Neurodivergent-Affirming SLT I focus on helping the Autistic person to advocate for themselves through their chosen method(s) of communication. I support them to express their choices, views, boundaries, emotions, and decisions. I give the person full autonomy to select their own goals. I help them to identify their communication strengths & needs using non-pathologising language. I use a trauma-informed approach which takes into context the historic marginalisation and exclusion of Autistic people, I consider the accumulation of sensory, interpersonal, and emotional trauma, and the intersections between other struggles e.g., gender dysphoria, eating disorders, ethnicity.

To empower Autistic children / adults through:​

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Autistic SLT | Emily Lees | Empowering autistic children

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I'm Emily, AutisticSLT. I am an autistic Speech and Language Therapist in the UK . My goal is to empower Autistic children and adults through - accessible information, lived experience of being autistic, expertise of Speech, Language and Communication, promoting neurodivergent-affirming practice

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There are lots of things we like to have in every-day life, right? But as an autistic person, there are some things I really struggle without.

This is my autism survival kit.

1. Fidget Toys
Fidget toys are brilliant for anxiety or restlessness. Not only are they a distraction from my thoughts, but they can also help me to focus on a task or on what someone is saying (I also have ADHD!). I feel safer when I have one on me and quite panicked when I don't. I keep them in my bags, all over my room and have a pop-it on my work lanyard (I work with kids, so it doesn't stand out at all - not that it would matter if it did!).

My day-to-day fidget toys are and . You can get them in so many places other than those websites too, like Amazon, supermarkets and WHSmith.

2. Weighted Blanket
My answer to the question 'if you were on a deserted island and could take 3 things...' is without a doubt my weighted blanket. It has helped me sleep so much better at night, to calm down when I am upset, and to feel safe when I am anxious.
I have a Gravity Blanket that I got for Christmas a few years ago, which I love. Guidance recommends purchasing one that is 10% of your body weight, but mine is a bit more. There are many other brands available now too, with cheaper alternatives.

3. Sensory Lighting
Being able to make my room feel like a sensory haven helps me regulate after work. I have LED strip lights around my room. I have a sunrise lamp on my bedside table that has lots of different colours and light settings. I have fairy lights on my walls too. I did have a lava lamp, but it made a buzzing noise that I did not like in the slightest, so I think it went to a charity shop.

4. Communication Cards
Communication cards like are great for autistic people who can find speech challenging. Or even those who find it hard to verbalise their needs, which can be quite common!

Alert cards are also useful, in-case you are out in public and need help, or need to show someone that you are autistic. There are many different alert cards from organisations such as The National Autistic Society and The Girl With The Curly Hair, and local areas or police departments, such as Autism Anglia, Autism Hampshire, Thames Valley Police, Autism West Midlands, and Scottish Autism.

5. Comfort Shows
It goes without saying how comforting these can be! I was obsessed with the T.V show Friends for years. I would watch it for hours and hours every single day. Sometimes it was on all day. The familiarity of watching the same show over and over again is comforting when life feels so overwhelming and unpredictable.

6. Noise Cancelling Headphones or Earplugs
I like to always have a pair of Loop Earplugs on me. There are lots of places and situations I wouldn't manage in (like my boyfriend's work leaving do last weekend which was a bar crawl - my worst nightmare!) without them. They mean I can do things I want to do, make travelling less stressful and being in the office at work easier!

7. Special-Interest Related Stuff
Special interests are often autistic people's escape when the world feels too much. Or, a way of navigating life using reference points from their interest and the predictability of being able to engage with it at certain points throughout their day. Without them, many of us would be lost, so they are such a core part of our survival kits.

8. Going to new places can be exciting (depending on the place...), but I feel stressed if I don't have something to eat on me which I know I like and can access easily. I tend to always have a cereal bar in my hand-bag. I like Naked bars. Or the Jordans Frusli ones. If I'm going away, I need to make sure I have cereal I like (because I always have cereal in the mornings!) and fruit juice to take my medication with. Safe foods are very important to a lot of autistic people, because the stress of eating different foods with unpredictable textures or flavours can be overwhelming sensory-wise!

What would you have in your autism survival kit, if you are autistic? Or in your general survival kit if you aren't?

There are lots of things we like to have in every-day life, right? But as an autistic person, there are some things I really struggle without.

This is my autism survival kit.

1. Fidget Toys
Fidget toys are brilliant for anxiety or restlessness. Not only are they a distraction from my thoughts, but they can also help me to focus on a task or on what someone is saying (I also have ADHD!). I feel safer when I have one on me and quite panicked when I don't. I keep them in my bags, all over my room and have a pop-it on my work lanyard (I work with kids, so it doesn't stand out at all - not that it would matter if it did!).

My day-to-day fidget toys are and . You can get them in so many places other than those websites too, like Amazon, supermarkets and WHSmith.

2. Weighted Blanket
My answer to the question 'if you were on a deserted island and could take 3 things...' is without a doubt my weighted blanket. It has helped me sleep so much better at night, to calm down when I am upset, and to feel safe when I am anxious.
I have a Gravity Blanket that I got for Christmas a few years ago, which I love. Guidance recommends purchasing one that is 10% of your body weight, but mine is a bit more. There are many other brands available now too, with cheaper alternatives.

3. Sensory Lighting
Being able to make my room feel like a sensory haven helps me regulate after work. I have LED strip lights around my room. I have a sunrise lamp on my bedside table that has lots of different colours and light settings. I have fairy lights on my walls too. I did have a lava lamp, but it made a buzzing noise that I did not like in the slightest, so I think it went to a charity shop.

4. Communication Cards
Communication cards like are great for autistic people who can find speech challenging. Or even those who find it hard to verbalise their needs, which can be quite common!

Alert cards are also useful, in-case you are out in public and need help, or need to show someone that you are autistic. There are many different alert cards from organisations such as The National Autistic Society and The Girl With The Curly Hair, and local areas or police departments, such as Autism Anglia, Autism Hampshire, Thames Valley Police, Autism West Midlands, and Scottish Autism.

5. Comfort Shows
It goes without saying how comforting these can be! I was obsessed with the T.V show Friends for years. I would watch it for hours and hours every single day. Sometimes it was on all day. The familiarity of watching the same show over and over again is comforting when life feels so overwhelming and unpredictable.

6. Noise Cancelling Headphones or Earplugs
I like to always have a pair of Loop Earplugs on me. There are lots of places and situations I wouldn't manage in (like my boyfriend's work leaving do last weekend which was a bar crawl - my worst nightmare!) without them. They mean I can do things I want to do, make travelling less stressful and being in the office at work easier!

7. Special-Interest Related Stuff
Special interests are often autistic people's escape when the world feels too much. Or, a way of navigating life using reference points from their interest and the predictability of being able to engage with it at certain points throughout their day. Without them, many of us would be lost, so they are such a core part of our survival kits.

8. Going to new places can be exciting (depending on the place...), but I feel stressed if I don't have something to eat on me which I know I like and can access easily. I tend to always have a cereal bar in my hand-bag. I like Naked bars. Or the Jordans Frusli ones. If I'm going away, I need to make sure I have cereal I like (because I always have cereal in the mornings!) and fruit juice to take my medication with. Safe foods are very important to a lot of autistic people, because the stress of eating different foods with unpredictable textures or flavours can be overwhelming sensory-wise!

What would you have in your autism survival kit, if you are autistic? Or in your general survival kit if you aren't?

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My Autism Survival Kit - Authentically Emily

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There are lots of things we like to have in every-day life, right? But as an autistic person, there are some things I really struggle without. This is my autism survival kit.

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The Party: a virtual experience of autism – 360 film

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"I talk about all things autism and mental health, while sharing stories of learning to navigate the world as a young autistic adult."

My name is Emily. I am a young autistic woman with ADHD. I talk about autism and mental health.

I've struggled with my mental health since the age of 13, which led to me being sectioned aged 16 on a children's mental health unit. I was diagnosed with autism just before my 17th birthday and ADHD at the age of 21. I began tweeting about my experiences shortly after my autism diagnosis, and discovered a whole online community of wonderful autistic people and...

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My name is Emily. I am a young autistic woman with ADHD. I talk about autism and mental health. I've struggled with my mental health since the age of 13, which led to me being sectioned aged 16 on a children's mental health unit.

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The Best Theory of Autism you've probably NEVER heard of...

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Neurobears - Autism Training for Families

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NeuroBears is for autistic young people, and their families, who want to learn what it means to be Autistic in a really positive way.

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Watch this if you think autism is bad ('Good To Be Me' music video)

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Autism Training for Parents | AUsome | Autistic-led

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Autism training for parents designed and delivered by people who are Autistic themselves. Parents gain insights, advise and understanding..

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Surviving The Festive Season - Autism Understood

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Christmas and the holiday season can come with a lot of uncertainty, change and extra socialising, which can make it a difficult time for some autistic young people. To help with some of these struggles, here are some thoughts and ideas from the young people at Spectrum Gaming on how to survive the festive season.

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Autism is a way of being.

It's a collection of specific differences from commonly

perceived expectations of sensory perception,

information processing & expression, which is viewed

by external observers as differences in

behaviour & communication.

​

Autistamatic is here to help both autistic and non-autistic people

understand more about the lives, challenges and above all
potential of autistic people in society today.

​

Join us as we explore our many coloured minds...

STOP Saying "People With Autism" (Person First Language)

Autism is easy to explain...isn't it? The internet is full of descriptions of autism from charities, medical companies, health authorities and academics, but hardly any of them have had any input from a single autistic person.

Should non-autistic people argue with autists over how to show us respect?How should you refer to someone when you know they're autistic? How should you refer to the autistic community? Are we autistic people or people with autism?

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Autism is a way of being. It's a collection of specific differences from commonly perceived expectations of sensory perception, information processing & expression, which is viewed by external observers as differences in behaviour & communication. ​ Autistamatic is here to help both autistic and non-autistic people understand more about the lives, challenges and above all potential of autistic people in society today.

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[CLICK TO JUMP TO DOWNLOAD ]
The Emotion Sensation Feeling Wheel

WHAT IS IT:

It's an adaptation of the "feelings wheel" that many therapists and educators use to help people learn to better recognize and name their emotions. This wheel is adapted to include common body-based expressions of emotions.

HOW THE EMOTION SENSATION WHEEL IS DIFFERENT:

The two inner rings of this wheel are emotions. The outside ring contains descriptions of the actual physical sensations that may accompany that emotion, described in concrete sensory language. (Language is intended to be more accessible for people who are very literal or who are on the ASD spectrum.)

How to get one for yourself:
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WHY?

When people have not had practice recognizing and labeling their emotions, asking them to identify complex emotions becomes an intellectual exercise with limited opportunity to promote growth and change. My emotion sensation wheel prompts mind-body awareness, connection, and conversation.

HOW TO USE:

* A jumping-off point
* A conversation starter
* A reference sheet
* A fill-in-the-blank worksheet for growing self-awareness

This chart is not intended as an assessment tool or scientific measure. Human experience is diverse. Good use of this resource should expect and embrace responses like, "That's definitely not true for me" or "Actually, that belongs over in that section." All responses generate opportunities for making connections, help integrate mind and body, and prompt valuable conversations that can help people grow in understanding how their unique body-sensations and emotions are connected.
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[click here to purchase the fill-in-the-blank style worksheet or the Spanish-language version]

Many emotional experiences, researchers at Columbia University have shown, start in the body before moving into awareness. When we can easily name an emotion we're feeling, it's because we've had a lifetime of practicing. Way back, an attuned caregiver noticed our eyes welling up with tears and affirmed our "sadness" as they comforted us. Or, they saw our wide-eyed panic at the appearance of a new person as they named and soothed our "fear."

Over time and through countless interactions that increase in complexity, children internalize an entire catalog of emotions and their corresponding body-sensations. With this catalog, humans can - in a split second and without conscious thought - understand specific embodied, emotional experiences. For example, a particular twisting of our gut is the nuanced version of anger we call irritation or a certain sort of heaviness in the chest is sadness. Even though everyone's body cues are just a little bit different, researchers in Finland found that for most of us, the felt sensation of any specific emotion is pretty similar from individual to individual.

But not all of us have the opportunity to develop a rich emotional vocabulary affirmed by an attuned caregiver. Often, people who missed that process (called "mirroring" by developmental psychologists) while growing up move through life experiencing a full emotional range within their physical body, but are unable to name, express, or seek comfort for (or connection-in) these emotions. At its most pronounced, this difficulty connecting and naming our feelings is known as Alexithymia. Although, many (if not most) humans have some familiarity with the experience of not being able to notice or name feelings.

Growth, for someone who struggles to name the emotions they experienced - or even acknowledge they are having emotions at all - means learning to recognize the sensations of a particular emotional experience and connect it to a cognitive, conscious understanding in order to express the emotion. (Expression can look like what we typically think of as emotional expression - tears, raised voice, etc. - but emotions can be expressed in many ways, including art, movement, and writing.)

This giant easy-to-read 10 inch sticker is made from thick, durable vinyl. Ships free to the US.
Interested in stickers and more? Join my Patreon.

This 18×18 inch cotton canvas pillow cover is soft, cozy, and printed with clear, readable text. Ships free to the US.

Direct orders are appreciated, however, you can also purchase through Amazon Prime. Amazon's 2-day inventory is currently sold out, but order today for shipping in 5-7 days.

The Two Ways We Experience Emotions:

Researchers have found that emotions come to be in two ways:

⬆️"bottom-up" emotional experience - (described above) where particular body sensations inform our awareness that something is going on emotionally.

⬇️"top-down" emotional experience - when information (like finding out we're not getting a promotion we wanted or being rejected by a romantic partner) creates a cognitive awareness of emotion that then moves down into the body.

Because emotional experience moves in two directions, people who struggle to feel, name, and express their emotions should seek recovery on multiple levels as well.

Get this design on a professionally printed poster, a mug, or on a throw pillow via my shop

This chart can help start conversations that begin to make connections on a cognitive level - like a top-down emotional experience. I hope this chart will be used in holistic work to engage the conscious logical brain, the body, and the emotional-limbic brain.

ALSO AVAILABLE: Blank Worksheet

This worksheet has the outer ring blank for customizing to an individual's own body. The worksheet pack includes an 8.5×11″ worksheet, an 11×11″ (tiles to two pages), and an XXL file for large format poster printing (excellent for a hands-on group or IOP activity).

Printing tip: For smooth, crisp lines on a standard 8.5 x 11 page, set the following in your printer settings: 1. select "fit to page," 2. choose "high-quality printing."

[this resource and others are available in Spanish via the Spanish Language Resources page]

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Emotion Sensation Feeling Wheel Handout by Lindsay Braman - LindsayBraman.com

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Emotions exist in the body- but how? This printable emotion sensation feeling wheel helps individuals match common emotions with the physical sensations that most often match those feelings.

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Why does my child suddenly meltdown "out of nowhere"?

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Why does my child suddenly meltdown "out of nowhere"?

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*"A meltdown (or shutdown) is when a child becomes very distressed and emotionally overwhelmed. They can be caused by many different factors, such as situations that are unpredictable, sudden changes or things not happening as the child was expecting. They can also be delayed as the child takes time to process a difficult situation and sometimes are caused by a build up of stressors so not one particular thing has triggered the distress. The child in meltdown does not intend to hurt or harm or indeed cannot often control what is happening to them. They are often frightened, overloaded and the way we react to them can often make it worse, not that we ever intend that!" Lynn McCann Understanding some of the triggers and also how to support a child from meltdown to recovery can take some working out - but here, Sarah Loveridge, one of our specialist teachers, gives some advice on where to look first.
Whether you're a teacher, TA or parent of an autistic child, we've all been there. Everything seems to be going fine and then seemingly "out of nowhere" we've got a huge meltdown on our hands. Where did it come from? Was it something we said?

Believing that meltdowns come from nowhere is a dangerous notion. It leads to a sense of helplessness and frustration in us as adults as we scramble to try and figure out what's caused this outburst of emotion. It also changes our perceptions towards autistic (and non-autistic!) children, painting them as unpredictable, out of control or just plain stroppy. Behaviour is often a communication that something isn't right or that some need isn't being met (whether that's a toddler "needing" a toy at the supermarket, or a teenager "needing" to feel accepted, loved and supported - both demonstrations of a certain behaviour tell us something).

It might help to picture your autistic child as a bottle of fizzy drink. Every time they get triggered, they're shaken up a little bit. This keeps happening throughout the day until suddenly the lid comes off and their emotions (sometimes quite literally) go everywhere. This is what we call a meltdown (or shutdown, when they internalise their distress) and it can often appear to come "out of nowhere". This is because the triggers have been building up gradually until it all becomes too much.

The good news is that whilst with autistic children it's never one-size-fits-all, there are usually some patterns we can look out for to help us support our autistic children before they hit the meltdown stage.

If we can spot these triggers and patterns throughout the day, then we're one step closer to supporting our children better through the chaos that is daily life. This list is by no means exhaustive, but here are some key areas to look out for:

Often it is the actions of others that can cause the build up of stress and pressure. If the child isn't being supported correctly at school, or if they are being picked on, left out or bullied by others. Check these issues out too. If a child can't tell you, you will have to investigate and trust your instincts as parents or as professionals.

1. Whether your autistic child is non-verbal, talks a lot and has mature vocabulary, or is somewhere in between, they all have their own ways of communicating. If we push them to communicate constantly in a way that is difficult for them (eg lots of verbal communication with little or no visual support) then this can be very draining and may lead to meltdowns later in the day.

TOP TIP: Use visuals as much as possible rather than just relying on verbal communication, and make it a two way street. Get them to show you how they're feeling or what they want, rather than trying to explain it. Use visual timetables to plan out the day and prepare them for any changes. Show them pictures of new or unfamiliar places (like the dentist) rather than just telling them. Using visuals can reduce anxiety and therefore hopefully also reduce meltdowns. We also need to give processing time - so pause often and don't be too quick to repeat or rephrase something.

2. Some autistic children are very keen to chat, and will talk to you for hours about their special interest or ask a hundred questions about why you're doing something. Although this may sound completely effortless it can actually be very draining, especially if they're talking to somebody new.

TOP TIP: If you spot a pattern of your child being very talkative in the morning and then having consistent meltdowns in the afternoon, this might mean they need some help spreading their communication energy out throughout the day. Make sure they have access to sensory activities to support their energy levels and if you say you will have a chat later - make that a specific time and keep to it. They might need help recognising that they need some alone time in the afternoon to recharge. It's all about balance - if they're able to do a 2 hour presentation to a room full of people, great! Don't stop them from doing that, but be aware that they will probably need to ensure nothing else is planned in for the rest of the day.

3. This is heavily linked to communication and can be vastly different from day to day, depending on who your child is interacting with and how that interaction goes. Again, if they are in a new or unfamiliar situation (eg talking to a grandparent they haven't seen for 3 years) then this will put more pressure and strain on them than if they're talking to you or someone else they see regularly (and like!)

TOP TIP: Put some structure in place around social interactions. Maybe they could play their favourite card game with the new person and explain the rules carefully at the start. Maybe they can take some pictures of their special interest so they have something familiar to talk about. Keep the interactions short if possible, and you might want to discuss this time limit with your child beforehand. Again, they may need some time to regulate/recharge after a new interaction, so plan this into your day too.

And let's remember the other side too - it shouldn't all be up to the autistic child to change their behaviour. Tell the relation or visitor what their role is in this, for example you could encourage them not to keep asking questions or demand hugs. Ask them to give your child space if they want it and time to process. If you manage the time and intensity of new social interactions carefully, this can minimise the risk of a meltdown later on.

4. Social interactions in large groups can be very difficult for autistic children, as they try to focus in on lots of different people talking at once (especially if they have sensory needs - we'll come back to that). Again, these times are often unstructured (eg playtime at school or playing football with friends) and it can be draining for your child to try and work out all the social rules required for them to "fit in" with those around them. Should they shout "goal!" every time someone scores? Does everyone hi-five or just certain people? How much eye contact does this game require? Why is everyone wearing a coat even though it's sunny?

TOP TIP: Encourage the other children to explain rules of games very clearly (eg in our running race, where do we start and end? When do we go? etc) - it shouldn't all be reliant on the autistic child changing to fit in so teach neurotypical (non-autistic) children how to adapt too. Give your autistic child an "out", whether this is a space where they can go and sit if it starts to become overwhelming or a "job" they can do to get away for a bit. Again, be aware that after spending time in a group, your child may need some time alone or with one "safe" person to recharge. And also let's remember, some autistic children might use playtime as a chance to regulate themselves after sitting in a noisy classroom during lessons so sitting alone might be just what they need.

to give all children some specific praise when they interact well with those around them - things like "well done, you made space for each other" or "thanks for allowing everyone to choose a rule in your game" or "well done for giving each other a turn". By stating specifically what they did well, we can give them some helpful clues about how to understand the social things around them whilst also explaining to others the social communication of your autistic child.

5. Sensory needs that aren't being met can be a constant source of frustration, confusion and sometimes even pain for an autistic child. For example, they may be hypo-sensitive which means their senses are under-stimulated and they fidget because their muscles are not giving the brain strong enough signals. To counteract this feeling, they rock on their chair or get up and walk around to wake their body up. On the other hand, they might be hyper-sensitive which means their senses are over-stimulated and light/sound/textures can become overwhelming. To deal with this, they may sing to themselves to block out other sounds, put their hands over their ears, run away or may hide under tables to get away from the light.

TOP TIP: It can be easy to create a "sensory safe space" at home or in your classroom by using a teepee, pop up tent or even just a blanket draped over a table. Ideally it will be quiet and fairly dimly lit, to minimise the potential for sensory over-stimulation. Create it together so it's somewhere special and personalised for them. You could put a favourite book in there, or some music they like or a big beanbag to give their muscles some sensory feedback (especially if they're hyposensitive) - personalise it together. This can then be used as a retreat throughout the day ( before they become overwhelmed) to help them regulate, therefore reducing the risk of future meltdowns. It can also be a safe space to access during a meltdown to help them calm.

- if they need movement then make it happen! Let them sit on a peanut or body ball, use a trampet, go for a walk or stretch with a yoga band. Let's not teach children to suppress these needs but rather give them strategies and space to help them get sensory feedback in appropriate and safe ways.

6. If your autistic child's senses are being over-stimulated they may live each day in a constant state of high alert. We might think they are anxious and worried all the time. Ever wonder why your child's eyes dart around the room whenever someone moves? Or how they know exactly where each fire exit is? Or why they "patrol" the perimeter of your picnic blanket? Things that may seem small to us, like preferring a certain pencil or not liking the consistency of some foods can have a huge impact on how well autistic children are able to function from day to day.

TOP TIP: Don't assume that a child is just being "fussy" or "picky" if they refuse certain objects or food. If possible, open a conversation with them about why they don't like it. What in particular is making them squirm or refuse? Make a little note of it and see if you can start to spot any patterns. This will help you to understand your child more and figure out ways how to work around potential triggers that may lead to a meltdown later in the day. Pick your battles - do they have to eat porridge for breakfast or could they have some dry cereal? Is it vital that they wear a coat or can they manage without?
Recommended further reading - The Out-of-Sync child by Carol Stock-Kranovitz.
There is so much more we could say on this and we know that every child is different so be kind to yourself. It will take time and patience to figure out those specific trigger points but hopefully by starting to spot patterns throughout the day, the links between potential triggers and future meltdowns will become a little bit clearer. Your child will communicate to you and you can be their advocate. If they need adjustments, it's the right thing to do.

Keep going, you're doing a great job!

Written by Sarah Loveridge - Reachout ASC Teacher, May 2021

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Why does my autistic child suddenly meltdown "out of nowhere"? - Reachout ASC

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"A meltdown (or shutdown) is when a child becomes very distressed and emotionally overwhelmed. They can be caused by many different factors, such as situations that are unpredictable, sudden changes or things not happening as the child was expecting. They can also be delayed as the child takes time to process a difficult situation and [...]

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Shared Responsibility for Communication | AJ's Brain

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Rejection Sensitive Dysphoria in ADHD & autism | Embrace Autism

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Rejection Sensitive Dysphoria is a common ADHD trait, but what causes RSD and how can it be differentiated from similar conditions?

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Spectrum Gaming is an online community for autistic young people. The aims of Spectrum Gaming are to enable autistic young people to develop meaningful friendships; to help them understand and develop a positive perspective of their differences; and to advocate for the needs of autistic young people

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Our online courses give neurodivergent young people, a nd their families, the knowledge they need to build confidence and manage stresses.

​

🌈 Affirming and positive 💜

Neurodiversity affirming

Nurtures your child's unique strengths

Supported by neurodivergent facilitators and peer

​

👋🏼 Accessible and Affordable 💲

No formal diagnosis needed to join

No waiting lists, affordable and easy to book

Free places available for low income families

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👨‍👩‍👦 Support that works for the whole family 👨‍👩‍👧

Convenient evening sessions, from the comfort of home

Young people participate however work best for them

Additional parent support sessions included

Parents looking for support for a young person

Education or healthcare professionals working with young neurodivergent people

Organisations or individuals looking to partner

University students interested in becoming peer facilitators

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Wellness support for neurodivergent young people. We're on a mission to give neurodivergent young people the tailored support they need to embrace their strengths and face their challenges as they journey into adulthood. We work with clinical experts and neurodivergent people to create solutions that work for neurodivergent brains.

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Chris Packham helps autistic people connect with their friends and family in a new way.

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Have you ever gone a morning without eating and/or drinking, only to be reminded you're famished by a visual cue such as a clock, rather than noticing a dry mouth or hunger pains?

If the answer is yes, you may, like many Autistic individuals, experience interoception differences.

What is interoception?

Interoception is colloquially known as the eighth sense (Mahler, 2017), and is a lesser-known yet crucial sense that helps individuals perceive and interpret signals originating from within their own bodies - signals such as hunger pains, thirst, fatigue, nausea, tummy flutters, a racing heart, goosebumps, sexual arousal, muscle tension, toileting urges, and even pain.

Our interoceptive awareness is mediated by a network of sensory receptors located in various organs, including the heart, lungs, stomach, bladder, eyes and skin. These receptors send signals to the insula in our brain about the state of our body's internal environment. Our brain then uses the information about how our body feels as clues to our emotional state. Are we anxious, sick, tired or excited?

Interoception is important because we need to be able to sense, process and integrate our bodily cues in order to maintain homeostasis, regulate our emotions and enjoy an overall state of wellbeing and connection to ourselves and others.

Interoception and Autism

Research shows our Autistic community experiences interoception differences more frequently than non-autistic individuals (Zachary et al., 2023). Similar to our sensory processing of external stimuli, Autistic individuals may be hyper- (over) or hypo- (under) aware of our bodies' internal cues.

This means we might have difficulty accurately perceiving our internal body signals, we may over-feel these signals or simply have difficulty differentiating between body signals and emotional signals, for example, struggling to discern if our discomfort is due to hunger or anxiety.

Such challenges can manifest in various ways and significantly impact our daily life, and physical and emotional wellbeing.

Challenges in Identifying Basic Needs

Interoception differences can make it difficult for Autistic individuals to accurately recognise and respond to basic bodily needs. This can lead to irregular eating and drinking habits, dehydration, constipation, or difficulty getting to the bathroom in time.

Emotional Regulation Difficulties

When non-autistic individuals begin to feel frustrated, angry, or upset, they can recognise these emotions and can utilise internal bodily signals to help them understand the reasons for those emotions, to take action to address them. In contrast, some Autistic people might struggle to notice and connect internal physical sensations with emotions. This confusion and disconnect can make it challenging to actively regulate our emotions when we need to do so.

As a result, we might appear fine, until unmet physical and emotional needs pile up and overwhelm us, leading to big emotions and/or survival behaviours like or .

Read more about how Autistic people experience emotions differently .

Difficulty with Introspection and Alexithymia

Interoception is essential for introspection, the ability to reflect on one's thoughts and feelings. Autistic individuals with interoception differences might find it challenging to engage in introspection, as it can prove difficult to interpret internal cues and connect them with our mental and emotional states. This can affect our ability to understand ourselves and integrate our experiences.

Many Autistic individuals are also alexithymic. alexithymia is a condition in which a person has difficulty identifying and describing their emotions and is closely associated with interoception differences. When internal bodily signals are misinterpreted or not recognised, it becomes challenging to associate these signals with specific emotions and identify how you're feeling. This can lead to a confused sense of self. Read an Autistic account of alexithymia.

Heightened or Diminished Experiences of Pain

Some Autistic individuals may experience heightened sensitivity to internal signals of pain. This can make it look like we're being 'overly dramatic' with big reactions, but it is vital to remember that each person's experience of their pain is genuine, individual, and intimately related to their interoceptive sensitivity. Others might have a diminished sensitivity, making it harder to notice when they're in pain.

This can have long-term health implications as Autistic people with low pain interoception may not attend to symptoms of injury, disease, illness or infection in themselves until it is well advanced. Read more about the Autistic experience of pain .

Impact on Social Interactions

Social interactions often rely on the ability to recognise and respond to one's own as well as others' emotional states. Interoception differences can make it harder for Autistic individuals to pick up on social cues and respond appropriately. For instance, we might not notice subtle signs of discomfort or stress in ourselves, which would help us remove ourselves from overwhelming or even dangerous situations.

Health and Wellbeing

Atypical interoception can also affect overall health and wellbeing. Difficulty in recognising and responding to bodily needs can lead to chronic health issues, such as poor nutrition, dehydration, and gastrointestinal problems. Additionally, the stress associated with misinterpreting internal signals can contribute to mental health challenges, such as anxiety and depression.

Strategies to Support Autistic Individuals with Interoception Differences

Autistic-led research shows that our interoception can be improved and there are many activities that can be harnessed to improve your or a loved one's interoception (Goodall, 2021).

Here are some strategies that can help:

1. Engaging in Interoceptive Awareness Training

Interoceptive awareness training involves activities and exercises designed to help individuals recognise and interpret internal signals. Mindfulness practices, body scans, and guided relaxation techniques can be beneficial. These practices can enhance awareness of bodily sensations and improve the ability to connect these sensations with emotions and needs.

2. Involving Visual Supports and Communication Tools

Visual supports, such as emotion charts and body maps, can aid Autistic individuals in identifying and expressing their internal states. These tools provide a visual representation of bodily sensations and emotions, making it easier to communicate needs and feelings. For example, an emotion chart might help an individual identify that a headache is related to stress or that a stomachache signals hunger.

3. Providing Consistent Routines

Establishing consistent routines around eating, drinking, and other selfcare activities can help mitigate the challenges of interoception differences. Regular schedules can serve as external reminders to address internal needs, reducing reliance on internal signals that might be misinterpreted or unnoticed.

4. Modifying our Environment

Creating a supportive and predictable environment can help Autistic individuals manage interoceptive challenges. Reducing sensory overload and embracing technology such as phone alerts to prompt selfcare activities such as drinking water can help individuals feel more in control of their internal states.

5. Making Space for Stimming

In a 2019 study, Autistic researchers found that repetitive, stimming behaviours, such as hand flapping and body rocking, are self-soothing and help to regulate the autonomic nervous system, which in turn generates interoceptive signals (Palser et. al., 2020). The focused attention from such stimming behaviours helped the Autistic children to accurately notice their heartbeats.

Caregivers, educators, family members and healthcare professionals should advocate for accommodations and encourage self-regulatory behaviours such as stimming, to provide a supportive environment for the Autistic individual.

Read more about the study in our summary for non-academics.
6. Offering Understanding and Validation

Supporting Autistic individuals with interoception differences requires a deep understanding and acceptance of our unique experiences. It's important to recognise that our perception of our own bodies may differ significantly from non-autistics, yet this difference is not a deficit. Our responses to internal cues, and physical sensations may be unexpected to some, but these responses are our authentic lived reality.

Validating and respecting our experiences, even when they diverge from neuronormative expectations, fosters an environment of support and empathy. By acknowledging and embracing these differences, loved ones can provide meaningful and compassionate support to us.

7. Upskilling your knowledge of interoception

Informing caregivers, educators, family members and healthcare professionals about interoception and its impact on Autistic individuals is crucial. Interoception differences significantly affect various aspects of life for Autistic individuals, from recognising basic bodily needs to managing emotions and engaging in social interactions. By understanding these impacts and implementing supportive strategies, we can improve Autistic quality of life, and support greater selfcare, emotional wellbeing, and social connection.

References

Goodall, E., (2021). Facilitating Interoceptive Awareness as a Self-Management and Self-Regulation Tool to Increase Engagement in Learning and Education . Master's Thesis, University of Southern Queensland.

Mahler, K., (2017). Interoception: The eighth sensory system. Lexena: AAPC Publishing.

Palser, E.R., Fotopoulou, A., Pellicano, E. et al. (2020). Dissociation in How Core Autism Features Relate to Interoceptive Dimensions: Evidence from Cardiac Awareness in Children. J Autism Dev Disord 50, 572-582. https://doi.org/10.1007/s10803-019-04279-4

Williams, Z.J., Suzman, E., Bordman, S.L. et al. (2023). Characterizing Interoceptive Differences in Autism: A Systematic Review and Meta-analysis of Case-control Studies. J Autism Dev Disord 53, 947-962. https://doi.org/10.1007/s10803-022-05656-2

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Interoception: Knowing Yourself Inside and Out - Reframing Autism

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Have you ever gone a morning without eating and/or drinking, only to be reminded you're famished by a visual cue such as a clock, rather than noticing a dry mouth or hunger pains?If the answer is yes, you may, like many Autistic individuals, experience interoception differences.

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A Beginner’s Guide to Self-Directed Neurodivergent Play

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The free document ‘A Beginner’s Guide to Self-Directed Neurodivergent Play’ has been created to support childminders, nurseries and schools interested in having necessary conversations about neurodivergent play.

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Autistic young people share which autism myths they hate the most!

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So you’ve discovered that you’re autistic. But you relate to many ADHD traits… So perhaps you actually have ADHD? Or maybe both?

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Hyperphantasia & aphantasia | Autisticality

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Understanding Aphantasia and Autism - Reframing Autism

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Research suggests that there may be a higher prevalence of aphantasia among Autistic individuals compared to the general population. While the exact relationship between the two is still being studied, it highlights the potential overlap and shared characteristics between Autism and aphantasia.It is theorised that the connection between Autism and aphantasia lies in the perception and integration of sensory information, specifically, a potential overlap in the underlying neural mechanisms and cognitive processes involved in complex thought.Research has shown that Autistic individuals often display atypical neural connectivity and activity across various brain regions involved in sensory processing, memory formation, and imagination. Aphantasia is theorised to result from disrupted neural connections involving the visual cortex, which prevents the formation or recall of mental images.

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Aphantasia & Autism: Visualisation & Neurodiversity

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Can’t visualize images? Aphantasia is common in autistic individuals, affecting memory & imagination.

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Pooky Knightsmith: Neurodivergence & Mental Health

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Pooky Knightsmith: Neurodivergence & Mental Health

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Autistic Communication: Different NOT Deficient

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The Low-Demand Communication Toolkit (2)

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When your child self harms - KNIGHTSMITH (1)

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Managing Morning Anxiety - Parent and carer guide (1)

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Autistic Communication- Different, Not Deficient (1)

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Pooky Knightsmith: Neurodivergence & Mental Health

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Interoception: What is it Why Does it Matter for Neurodivergent Children?

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Supporting Your Demand Avoidant Child - companion notes

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Autistic individuals frequently experience stress and overwhelm as part of their daily lives.

Simply navigating a culture and environment that do not align with their needs can be a source of constant stress, often resulting in sensory and emotional overload. This stress can originate from various factors, such as anxiety-inducing social scenarios, unwelcoming work environments, or excessively stimulating surroundings.

Moreover, it can manifest in manners that may appear perplexing to those who are neurotypical.

One of such results of chronic stress, overwhelm or sensory overload is an Autistic shutdown.

What is an Autistic shutdown?

An Autistic shutdown refers to the condition in which an Autistic individual retreats from their surroundings. This shutdown is often a coping mechanism triggered by an overload of sensory or emotional stimuli, or simply due to exhaustion from excessive processing of stimulation.

A shutdown signifies a discrepancy between the individual's requirements and the environment they are functioning in.

When an Autistic person is attuned to their own needs, they may consciously initiate a shutdown as a means of self-protection. Alternatively, it can occur involuntarily as a response to feeling overwhelmed.

Essentially, the shutdown shields the Autistic individual's nervous system from stimuli that are perceived as excessively intense or overpowering. During these episodes, the person may become unresponsive, withdrawn, or exhibit signs of extreme fatigue.

Being able to identify the typical causes of a shutdown is crucial in effectively managing and potentially avoiding them altogether.

These triggers may differ from individual to individual, but commonly involve elements like sensory overload, overwhelming social situations, stress, anxiety, sudden disruptions to routine, a succession of minor distressing incidents, and other factors.

Meltdowns vs. shutdowns

Autistic individuals may display signs of distress when they are overwhelmed by chronic stress. This can manifest in both internal and external ways. One common external expression is an Autistic meltdown, which can be quite dramatic and easily noticeable.

For those who are not familiar with Autism, these meltdowns may appear to come out of nowhere.

Unfortunately, meltdowns are often misunderstood as tantrums by those who are not familiar with the challenges of Autism. It is important to recognise that a meltdown is not a result of bad behavior, but rather a response to sensory overload, emotional overwhelm, or intense stress.

An Autistic shutdown, on the other hand, is different.

Autistic shutdown, the lesser-known counterpart of the Autistic meltdown, is often overlooked by many individuals due to its internal nature. Shutdowns are a more 'muted' reaction to intense overload, overwhelm or stress. This internal expression of distress is frequently unnoticed by those around the neurodivergent person. Despite its invisibility, an Autistic shutdown is equally distressing for the individual experiencing it and can significantly impair their overall quality of life.

Autistic burnout vs. shutdowns

Burnout, although related to shutdowns and meltdowns, is distinct in nature. While shutdowns and meltdowns are immediate reactions to stimuli, burnout is characterised as a continuous state.

In a 2020 study conducted by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), Autistic adults were examined to understand how they describe burnout. The study identified chronic exhaustion, loss of skills, and reduced tolerance to stimulus as the primary features of burnout.

One participant shared their experience, stating that existing in the world as an Autistic individual is incredibly draining.

Burnouts can arise from significant life changes such as relocation, the loss of a family member, or starting a new school.

However, burnout, along with temporary shutdowns and meltdowns, can often be the culmination of daily stressors, particularly masking.

Masking refers to the act of concealing one's Autism. In the AASPIRE study, a majority of participants identified masking as a significant factor contributing to burnout. One participant described it as the accumulation of "psychic plaque" in the mental and emotional well-being, similar to the buildup of physical plaque leading to heart attacks or strokes.

Furthermore, the participants emphasised that a lack of support can trigger or exacerbate burnouts. Some individuals required formal support such as disability services or therapy, while others simply sought more understanding from their loved ones.

During burnout, individuals may struggle to perform certain skills as effectively as they once did and become more susceptible to sensory overload, resembling a shutdown. However, burnouts persist for much longer durations, spanning weeks, months, or even years.

Additionally, shutdowns and meltdowns are more likely to occur during burnout due to the individual's diminished ability to manage anxiety.

What does an Autistic shutdown look like?

Identifying an Autistic shutdown in real-time can pose a challenge due to the subtle and individualised nature of the signs. However, once you familiarise yourself with the typical physical, emotional, and behavioural indicators, you will be better equipped to recognise and address these episodes, whether you are the one experiencing the shutdown or a supportive person in their vicinity.

It is crucial to have a grasp of the indicators of an Autistic shutdown in order to intervene early, whether it entails relocating to a more tranquil environment or employing alternative coping mechanisms.

It's not always easy to tell when a shutdown is about to happen, but if an Autistic person is feeling overloaded, it's helpful to understand the root cause.
1. Physical signs of an Autistic shutdown
Physical manifestations of withdrawal can be observed in Autistic individuals during a shutdown. These manifestations may present as fatigue or an excessive display of tiredness, reduced motor coordination, or a deceleration in movements. Some individuals may become unresponsive and completely cease verbal communication, while others may restrict their speech to brief one or two-word responses. The inability to provide coherent answers to questions is a clear indication that a shutdown is underway.
2. Emotional signs of an Autistic shutdown
Individuals going through a shutdown may appear detached or distant on an emotional level. They might struggle to articulate their emotions or exhibit an unusually passive demeanor. This behavior can occasionally be misinterpreted as apathy, but it is crucial to recognise that this emotional withdrawal is a coping mechanism in response to feeling overwhelmed, rather than a genuine absence of emotion or care.
3. Behavioural signs of an Autistic shutdown
In terms of behavior, individuals may exhibit a withdrawal from activities they typically find enjoyable, display a diminished responsiveness towards social interactions, or demonstrate a decreased interest in their environment. They might seek out a calm and less stimulating setting or engage in self-soothing actions, such as stimming.

That being said, it is crucial to bear in mind that these indicators do not serve as conclusive evidence of an Autistic shutdown, and they can also differ among individuals. Instead, they imply that something is happening and should be taken into account in relation to the person's typical behavior and recent encounters.

Warning signs of an Autistic shutdown

The shutdown process is almost entirely automatic, with many Autistic people unaware of it happening in the moment. However, there can be warning signs that the Autistic person may experience.
Signs of an incoming Autistic shutdown may include:

A feeling of confusion

Dissociation

Sudden fatigue

A sudden tension headache

Increased anger or irritability

Feeling cut off from or numb to emotions

Understanding and watching for these signs can help warn that someone may be about to experience a shutdown. If you can, try to help them circumvent the shutdown by removing them from a stressful situation that may be triggering the tension, taking a walk with them, fetching them a drink of water or a snack, encouraging them to take a nap, or indulging in an enjoyable hobby with them.

However, sometimes even with warning signs, a shutdown is inevitable. It's important to remember that shutting down is not a conscious choice by the Autistic person, but an involuntary and self-protective response to overwhelm.

Autistic shutdown triggers
Some specific triggers for a meltdown in an Autistic person - child or adult - may be:

Sensory triggers

Stress

Unmet needs that the person is unable to communicate

A disruptive work, school or home environment

Inconsistency or change in routine

Lack of sleep

Life changes such as marriage, births, moving house, changing jobs etc.

Co-occurring mental health conditions such as anxiety and depression

Hormone changes

Chronic pain, illness or other disability

Reactions to new medications

Lack of control over an element of life

Sensory stimuli (meaning any kind of sound, touch, taste, sight or smell) is one of the most common shutdown triggers. Some more specific examples of sensory triggers that could cause or contribute to an Autistic shutdown are:

Auditory input (sounds) such as machines, animals, voices, or music

Tactile input (touch) such as the different textures of clothing, or being touched by people, or touching/stepping in an unwanted texture

Visual input such as patterns, busy places, or lights that are too bright

Olfactory input (smell) such as the smell of food, perfume, people, or animals

Gustatory input (taste) such as the flavor of foods, drinks, and medicines

Input from movement, such as travel or exercise, that is too much or too fast

Cognitive stimuli is another common Autistic shutdown contributor. When the brain becomes overwhelmed with too much information at once to process, anxiety during an activity (or in anticipation of an activity), or being subject to too many forms of information at once (e.g. multiple people talking, or talking while showing diagrams and images), sensory distress leads to dysregulation, which then gives way to a meltdown.

Research suggests that this may be because Autistic brains, unlike neurotypical brains, do not acclimatise or "get used to" some stimuli, so the feeling of threat/anxiety/distress remains at a high, rather than a downward gradient as we might see in a neurotypical brain.

It's important to note that Autistic shutdown triggers are often the same as Autistic meltdown triggers. The response - and whether it leans towards a meltdown or a shutdown - will depend on the individual.

Many Autistic people report a that "snowstorm" of meltdowns occurring often predicts an incoming shutdown for them.

For instance, an Autistic person may be experiencing repeated meltdowns every day due to an ongoing work or personal stressor. After several concurrent days of meltdowns, the already severe level of overwhelm reaches a critical tipping point, and the Autistic person then experiences a shutdown.

However, this isn't always the case. Some Autistic people have never experienced a meltdown but have experienced a shutdown, and vice versa.

As with all individuals, the way an Autistic person responds to overwhelm is dependent on a wide variety of factors, including but not limited to their overall mental health, personality traits, upbringing, attachment style and any pre-existing trauma that they may have experienced.

The impacts of Autistic shutdowns

Autistic shutdowns can significantly influence different aspects of daily life for the person experiencing them, and generally are an exhausting experience. Ongoing stress can lead to not just shutdowns, but full-on burnout and possible depression. Presented below are several domains that may be impacted.
1. Emotional health
Regularly experiencing shutdowns can have a significant impact on one's emotional well-being, resulting in heightened levels of stress, anxiety, and a sense of isolation. These persistent challenges can gradually give rise to (or exacerbate) depression and various other mental health difficulties.
2. Physical health
Some individuals may encounter physical symptoms either during or following a shutdown, including migraines, gastrointestinal issues, or overall exhaustion, all of which can further hinder their ability to carry out daily activities. In rare instances, certain individuals may even encounter significant difficulties in their mobility or in vacating their premises during a shutdown, thereby hindering their capacity to participate in almost all aspects of their daily routines.
3. Communication
Shutdowns can greatly impede communication capabilities, be it verbal expression, decision-making, or even sending a simple text. In certain cases, the ability to think coherently and logically can be severely compromised, rendering communication difficult or even impossible.
4. Sensory processing
During a shutdown, individuals may experience an increased sensitivity to sensory stimuli, causing previously manageable environments to become overwhelming. This heightened sensitivity can significantly impact their ability to function effectively in a range of settings, including grocery stores and public transportation.
5. Household management
During a shutdown, routine responsibilities such as preparing meals, maintaining cleanliness, and handling financial matters can transform into overwhelming obstacles. Additionally, the ability to effectively parent may be affected, as the emotional and cognitive capacities required to nurture a child may be temporarily out of reach.
6. Social interactions
Shutdowns have the potential to disrupt social engagements and pose challenges in maintaining interpersonal connections. In the event of a shutdown happening amidst a social gathering, for instance, the person might feel compelled to retreat, resulting in potential misunderstandings or strained dynamics.
7. Work and/or school performance
In professional or academic environments, shutdowns can pose difficulties in maintaining focus, actively participating in tasks, or even being physically available. Consequently, this can result in reduced efficiency and notable miscommunications with peers or instructors, potentially impacting one's professional growth or academic achievements.
8. Self-care
During a period of shutdown, even fundamental self-care activities such as nourishment, hygiene, and personal grooming can become burdensome and difficult to manage.

Autistic shutdowns and neurodivergent mental health

Autistic shutdowns serve as a means to escape from the constant overthinking that can impact Autistic individuals. Whilst involuntary and often scary, these shutdowns offer a much-needed respite and reset for their brains, which is crucial for maintaining their overall mental well-being.

The minds of Autistic individuals are often in a state of hyperactivity, constantly engaged in tasks such as categorising information, searching for patterns, practicing social interactions, and concealing their true selves.

As one can imagine, this constant mental exertion can be incredibly draining. When external pressures and expectations are added to the mix, it becomes a perfect storm for a meltdown. In essence, shutdowns act as a valuable coping mechanism experienced by many Autistic individuals to prevent overwhelming meltdowns and safeguard their mental health.

How to support someone during an Autistic shutdown

If you have a connection with an Autistic person as a friend, family member, or caregiver, it can be incredibly beneficial to understand how to respond when they experience an Autistic shutdown. It is crucial to keep in mind that each Autistic individual is distinct, meaning that what may be effective for one person may not be for another. Nevertheless, here are a few overall approaches you can employ if someone you are acquainted with is going through a shutdown.

In the event of a shutdown, it is crucial to prioritise the safety and well-being of the individual. This entails gently guiding them to a serene and less stimulating environment, using a composed and reassuring tone while communicating, and respecting their personal space by refraining from any physical contact without their consent, as touch can sometimes exacerbate the situation.

Additionally, don't pressure them to talk or communicate: It is important to refrain from pressuring individuals who are going through a shutdown to communicate or participate, as they may not have the capacity to do so. It is crucial to recognise that their lack of responsiveness or distance is not intentional, but rather a result of their brain attempting to manage an overpowering situation.

When it comes to long-term strategies, try to reduce the exposure to chronic stressors.

If you are aware of the factors that cause stress, you can strategise to minimise exposure to them. In situations where it is impossible to avoid these stressors, make an effort to limit the duration of the Autistic person's presence and help them prepare in advance by carrying items such as ear plugs or sunglasses to mitigate sensory sensitivities. These tools can help reduce the intensity of sensory inputs and promote a more comfortable experience.

If there are frequent shutdowns occurring in a particular setting, it could indicate that the setting is not suitable for the individual, and a modification might be required.

Just like a saltwater fish cannot be expected to flourish in a freshwater aquarium, the needs of a saltwater fish differ from those of a freshwater fish. This does not imply any fault with the saltwater fish; it simply requires a slightly different environment to thrive.

Additionally, helping the Autistic person to practice stress management techniques can effectively reduce the occurrence and intensity of shutdowns. By doing so, you can proactively help them to employ strategies such as deep breathing to alleviate stress before it reaches a critical level.

It is advisable to practice these techniques in secure environments, allowing them to become ingrained habits that can be readily utilised during times of stress. Trying deep breathing for the first time during the midst of a shutdown may not be effective or helpful... but if the Autistic individual has had the benefit of practicing deep breathing beforehand in a safe environment, while fully regulated - and they feel confident that they know how to do it - then they are much more likely to be able to self-soothe by deep breathing during a shutdown.

Creating a shutdown plan

You may also like to create a "Shutdown Plan" with and for the Autistic individual. Having a well-thought-out "shutdown plan" can be extremely beneficial in managing unavoidable situations that often lead to shutdowns.

This plan could involve recognising early indicators of a shutdown, setting up a secure and comfortable environment for such instances, and devising alternative communication methods for situations where verbal communication becomes challenging.

You might like to create a step-by-step list of things to do in the situation that is triggering regular shutdowns - this means that the list can be pulled out and referenced at a moment's notice, and can serve as a helpful grounding touchpoint during the panic and overwhelm of a shutdown.

Developing a personalised shutdown plan, specifically designed to identify the signs promptly and effectively handle the situation, can also be an empowering measure for Autistic people. This not only provides relief but also instills a sense of mastery over a potentially overwhelming aspect of their lives.

Having a well-thought-out strategy in case of unexpected challenges can greatly enhance your self-assurance when facing known stressful circumstances. It is crucial to always have a contingency plan in place for navigating stressful situations and effectively communicate it to those accompanying you. By doing so, not only will they be aware of the plan's execution, but they can also provide assistance if needed.

Recovery time

In the event of a shutdown, it is common for Autistic individuals to eventually recover (just as they would for a meltdown). However, the duration of the recovery process can vary depending on the cause of the shutdown, the level of overwhelm experienced, and the proximity to the triggering factor.

To ensure the well-being of the Autistic person, it is advisable to give them some space during a shutdown.

Allowing them to be alone for a period of time enables them to gradually reduce stress and facilitates a more natural recovery, minimising the risk of another shutdown. If they experience multiple shutdowns, it is important to identify strategies that aid in their recovery. This could involve engaging in activities they enjoy, utilising stimming techniques, or providing them with a calm and reassuring word or touch. The latter can be particularly beneficial, as it offers easily tangible support to them during times of heightened stress or anxiety.

The importance of empathy and understanding

Autistic shutdowns can be silent emergencies, concealed yet profoundly impactful. They manifest subtly, compelling the individual to retreat into a safeguarding cocoon that shields them from overwhelming stimuli. Identifying these shutdowns is imperative for anyone seeking to provide assistance to Autistic individuals, be it a family member, friend, caregiver, supervisor, colleague, or even the person undergoing these states.

Exhibiting patience, comprehension, and compassion is arguably the utmost crucial aspect of providing assistance to someone going through an Autistic shutdown. It is essential to bear in mind that an Autistic person experiencing a shutdown is doing so as a response to overwhelming circumstances. In response, it is vital to demonstrate kindness and reassurance, while simultaneously offering support without exacerbating their already heightened levels of stress.

Never shame them, blame them, or chastise them. Shutting down is not a conscious choice, or a flick of a switch, or an attempt to manipulate a situation with behaviour. It is largely out of the Autistic person's control, and while they may sense it coming and sometimes may be able to self-soothe or co-regulate enough to stave off a shutdown, it is still not a conscious choice.

No Autistic person would ever consciously choose to shut down. It can be scary, overwhelming, panic-inducing and embarrassing. An Autistic person experiencing a shutdown is an Autistic person who has been pushed past their limit, and they need compassion, support and importantly, non-judgement.

It's also important to know that shutdowns can be helpful to Autistic people. While they can take a few minutes or hours to recover from, they can also help to block out stresses and strains. Do what you can to help and they'll feel better for it.

Empathy and well-informed support can truly have a profound impact on someone grappling with an Autistic shutdown.
It is crucial to bear in mind that the objective of comprehending and handling Autistic shutdowns is not to "repair" the person, but rather to create a world that is more inclusive and considerate of their requirements. This can only be achieved through raising awareness, providing education, and fostering empathy towards the diverse ways in which individuals perceive the world. Autistic individuals, like all individuals, possess a variety of experiences and reactions to the world surrounding them. By comprehending these diverse experiences, we can enhance our ability to provide support to Autistic people in a way that acknowledges their unique neurological makeup and enhances their overall well-being.

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All About Autistic Shutdowns: A Guide for Allies - Reframing Autism

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Autistic individuals frequently experience stress and overwhelm as part of their daily lives.Simply navigating a culture and environment that do not align with their needs can be a source of constant stress, often resulting in sensory and emotional overload. This stress can originate from various factors, such as anxiety-inducing social scenarios, unwelcoming work environments, or excessively stimulating surroundings.

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An Autistic meltdown, also sometimes referred to as an autonomic storm, is a reaction to feelings of intense overwhelm, distress, or dysregulation.

Although some may see an Autistic meltdown as a tantrum, or worse - as someone being manipulative to get their way - that is not the case.

A meltdown is not a conscious behaviour that can be changed, but rather an uncontrollable response to overwhelming feelings; a physical reaction to an overwhelmed brain. Too much information from sensory or cognitive stimuli triggers the automatic nervous system, which then signals to the brain that the person is in danger. This results in behaviours of distress, which can manifest in a variety of ways.

What does an Autistic meltdown look like?

Studies have revealed that Autistic individuals possess neurons that exhibit a higher level of connectivity compared to non-Autistic people. This sheds light on the reason why Autistic individuals are more susceptible to being overwhelmed by their surroundings. The sensory systems of Autistic individuals function in a distinct manner, and when faced with overwhelming stimuli, it can lead to a complete meltdown of their emotional and cognitive state.
A meltdown may look like:

Crying, wailing, sobbing

Screaming

Throwing objects, breaking objects

Flapping or pacing

Withdrawing or shutting down

Clenching or grinding teeth

Zoning out or dissociating

Running away (eloping)

Hitting, punching, biting, kicking or pushing (objects, oneself, or others)

Intense stimming (e.g. rocking, vocal stims, muscle tensing, joint cracking)

Autistic meltdowns can last from ten minutes to an hour or longer, but often last at least 20-30 minutes past the removal of the initial trigger (potentially longer if the trigger is not removed or resolved).

It's important to note that a meltdown is never a contrived or pre-meditated act, and an individual often has little to no control over the behaviours that may manifest during the height of a meltdown.

Once a person becomes aware that they are melting down, with support and strategies in place, they are then more able to de-escalate themselves.

Meltdowns are common for Autistic individuals of all ages and levels of support needs, and can often be triggered by rejection sensitivity, distress intolerance and emotional regulation issues.

Sensory meltdowns can also occur, when there is too much external stimuli for the brain to process at once (for example: bright lights, loud music, noises that trigger pain or distress, too many people talking at once, or poor temperature control).

After a meltdown, it can take a while for an Autistic person to recover, and they'll most likely need time and space to regain emotional regulation. In the aftermath of a meltdown, many Autistic people report that they are unable to recall the details of what happened. This memory lapse, in itself, can be distressing and may contribute to subsequent anxiety.

Autistic meltdown triggers
Some specific triggers for a meltdown in an Autistic person - child or adult - may be:

Sensory triggers

Stress

Unmet needs that the person is unable to communicate

A disruptive work, school or home environment

Inconsistency or change in routine

Lack of sleep

Life changes such as marriage, births, moving house, changing jobs etc.

Co-occurring mental health conditions such as anxiety and depression

Hormone changes

Chronic pain, illness or other disability

Reactions to new medications

Lack of control over an element of life

Sensory stimuli (meaning any kind of sound, touch, taste, sight or smell) is one of the most common meltdown triggers. Some more specific examples of sensory triggers that could cause or contribute to an Autistic meltdown are:

Auditory input (sounds) such as machines, animals, voices, or music

Tactile input (touch) such as the different textures of clothing, or being touched by people, or touching/stepping in an unwanted texture

Visual input such as patterns, busy places, or lights that are too bright

Olfactory input (smell) such as the smell of food, perfume, people, or animals

Gustatory input (taste) such as the flavor of foods, drinks, and medicines

Input from movement, such as travel or exercise, that is too much or too fast

Cognitive stimuli is another common Autistic meltdown contributor. When the brain becomes overwhelmed with too much information at once to process, anxiety during an activity (or in anticipation of an activity), or being subject to too many forms of information at once (e.g. multiple people talking, or talking while showing diagrams and images), sensory distress leads to dysregulation, which then gives way to a meltdown.

Research suggests that this may be because Autistic brains, unlike neurotypical brains, do not acclimatise or "get used to" some stimuli, so the feeling of threat/anxiety/distress remains at a high, rather than a downward gradient as we might see in a neurotypical brain.

The warning signs of an Autistic meltdown

An Autistic meltdown can be triggered by a number of factors, and there are generally "pre warning" signs that an Autistic person is heading towards a meltdown.
Some common signs to look for:

Increased anxiety, such as fidgeting, rocking or pacing

Difficulty communicating or expressing themselves clearly

Heightened sensitivity to sensory input

Becoming easily frustrated or irritated

Withdrawing from activities that they normally enjoy

Engaging in repetitive behaviour more frequently than usual

Not everyone, however, will display pre warning signs of a meltdown.

Autistic meltdowns in children

Many people conflate Autistic meltdowns with a tantrum, especially in children. Meltdowns and tantrums may look similar, but are not the same.

Tantrums are used to control or manipulate an outcome via displaying extreme behaviours - they have an end goal and employ behaviours as a tactic to get what the child wants, whereas meltdowns do not have a goal or objective.
Example 1: A child wants a toy in a toy store, the parent says 'no'. The child has learned that if they start screaming and making a scene in public, the parent will cave and give the child what they want. The more times this cycle is repeated, the more the tantrum becomes a learned behaviour that the child may employ to get what they want. This is an example of a tantrum. Example 2: A child is in the toy store with their parent. The child is feeling dizzy from the fluorescent lights and the loud beeping sounds of some musical toys. The parent notices the child displaying increasingly anxious behaviours. The parent tries to distract the child by showing them a toy, but the stressful stimuli persists, and so the child becomes dysregulated. The child begins involuntarily flapping, crying and fidgeting and is having trouble expressing themselves. Their behaviour becomes increasingly panicked and distressing. This is an example of a meltdown.
Meltdowns don't have an end goal. There's no strategy or greater purpose, and certainly no attempt to manipulate - they are purely reactive and a sign of great distress.

Further reading:
Learn how to navigate meltdowns as the parent of an Autistic child -Parenting an Autistic Child: A Practical Guide

Autistic meltdowns in adults

While meltdowns are commonly associated with children, it is important to recognise that Autistic adults can also experience them. This includes Autistic individuals who may otherwise be seen to have "low support needs". Meltdowns can occur at any stage of life, and may become more frequent during times of increased stress or anxiety. The misconception that only children experience meltdowns can lead to Autistic adults feeling overlooked, misunderstood and ashamed.

Phung et al. (2022) conducted a study that revealed the experiences of autistic adults, who expressed a profound sense of being overwhelmed and lacking control. These individuals described this sensation as something that permeates their entire body. They reported experiencing symptoms such as blurred vision, heightened muscle temperature, flushed cheeks, and tense shoulders.

Additionally, they mentioned struggling with cognitive processes, including difficulties with thinking, finding words, and recalling simple information. Autistic adults conveyed a pervasive feeling of complete disarray, as if their surroundings were enveloped in a haze of uncertainty.

The same study also discuss a phase known as burnout, which occurs prior to a meltdown in individuals with autism. During this stage, the autistic individual experiences fatigue, feelings of being overwhelmed, slowed cognitive processing, and struggles with cognition. It is during this period that the constant pressure and intense sensory and emotional stress start to deteriorate the autistic person's capacity to carry out daily tasks. It is crucial to support and encourage autistic individuals to reduce emotional and sensory pressures during this phase in order to prevent meltdowns from occurring.

Further reading:
An Autistic adult recounts their lived experience with meltdowns -Menopausal and Melting Down: An Autistic Tale of Sensory Survival

Helping an Autistic person during a meltdown

If an Autistic person is having a meltdown, the best thing you can do is to be there to offer support in a calming manner - importantly, without judgement. Help the person relax and feel safe.

When an Autistic person is having a meltdown, it's helpful to stay calm. Their behaviours may be distressing to witness, but try to remember that the behaviours are not deliberate, and are coming from a place of the person's severe feelings of distress.
Try to respond by:

Staying calm

Staying quiet/not talking over them to avoid contributing to auditory overload

Moving slowly and calmly (sudden movements may make them feel as though they are in danger, or about to be "punished" for melting down)

Giving them space

Not touching them without their permission

In short - be calming, reassuring and patient. Don't try to talk them out of it, or scold or punish them.

It's not their fault, and it's not deliberate or calculated. It's overwhelming, scary and awful to experience a meltdown, and a person experiencing a meltdown will most benefit from genuine support and non-judgement.

Show the person kindness, care and compassion, and know that they desperately want the meltdown to end just as much as you do.

Be curious about what the experience of meltdowns is like for them as a unique individual, without making assumptions or judgements. Never shame them for having a meltdown, and never attempt to punish or scold them.
Some ideas to help calm a person experiencing a meltdown:

A drink of water

Soft toys or cushions to hold

Something to rock on

Noise-cancelling headphones

Comforting smells

Calm music (or upbeat music that they enjoy, if that is their preference)

Singing, humming

A weighted blanket or vest

Space

Peace and quiet

Turning the lights off

A cool compress for the head

It may take trial and error to find the strategies that work, and meltdown triggers may vary with time and context - what triggered a meltdown two months ago might be fine today, and vice versa.

Safety is imperative - for both the Autistic person, and anyone in the area. Some meltdown behaviours can be frightening and sometimes dangerous. If this is the case, try to help the person get to a safe, quiet room until the meltdown is over.

Eventually, the meltdown will subside. The Autistic person may experience remorse, guilt or shame, and engage in self-criticism. When calm, the person may be able to describe what happened - but it's not uncommon for a person to have limited to zero memory of what happened.
Immediately after a meltdown, the person may feel exhausted. You can help them to regroup by:

Giving them time and space

Providing a calm or familiar activity, such as reading a book or touching a sensory object

Playing their favourite music or movie to give them something pleasant to focus on

Ensuring not to use shaming, punishing or judgmental language or tone about the meltdown - encourage them to discuss their feeling with you when they're ready, without pushing them

Try to determine if there were new triggers or a combination of triggers

Ask them how you can best support them next time

Further reading:
Learn how to respond to the aftermath of a meltdown -How to Respond Empathetically to a Meltdown

Preventing an Autistic person from experiencing a meltdown

"Preventing" a meltdown isn't always possible, but you may be able to help an Autistic person better avoid meltdowns by understanding their unique triggers, and making appropriate accommodations.
For example:

Taking sensory regulation items to activities/times where distress is likely (such as parties, loud venues, venues with bright lights) to help the Autistic person self-regulate

Providing consistent routine, and giving advance notice to upcoming changes in routines

Acknowledging the person's emotions without judgement, and giving them space and opportunity to tell you if they think a situation is likely to contribute to them melting down

Deciding on a code word between you, that the Autistic person can use to quickly let you know they're in distress

Other co-regulation strategies will depend on the age of the Autistic person, their support needs, and your relationship to them. However, every method of helping an Autistic person stave-off a meltdown is generally centered around care and compassion.

Like any other coping strategy, preventing a meltdown is only possible when the exacerbating triggers/stimuli are recognised early enough, and the person is able to be removed from the trigger or given a strategy to cope.
Example: an Autistic person in a grocery store is getting overwhelmed by the food smells, bright lights, loud beeping from the checkouts. They start to become agitated and start fidgeting and pacing. Their anxiety is increasing the longer they're exposed to the trigger. If given the option to leave the store, or to put on some sunglasses and noise cancelling headphones, they may be able to take the edge off the dysregulation, and bring themselves down from that heightened nervous system state. However, if they're left without coping tools and are required to simply sit in the increasing feelings of distress, a meltdown is much more likely.
Be curious and ask the Autistic individual (in age appropriate terms, for children) how they're feeling. Understand if they're feeling distressed, anxious or overwhelmed, and find ways to either eliminate the cause or help them break down the cause into manageable steps.

Ultimately, helping an Autistic person prevent (where possible) and navigate meltdowns starts with you demonstrating to them from the start that you're a safe, trustworthy and caring person.

Whether you're their parent, spouse, friend, family member or a support professional, trust is the cornerstone of safe relationships. When an Autistic person feels safe and comfortable with you, the more easily they will be able to communicate distress, anxiety and incoming meltdowns - and this will best place you to help them navigate it as gently and painlessly as possible.

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An Autistic meltdown, also sometimes referred to as an autonomic storm, is a reaction to feelings of intense overwhelm, distress, [...]

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Spoon Theory is a kind of pacing system that helps those with disabilities and chronic illnesses monitor their energy levels and prevent burnout. In this article, I explain how I’ve adapted Spoon Theory for Autism and ADHD

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Spoon Theory For Autism and ADHD: The Neurodivergent Spoon Drawer

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4 times as many boys are diagnosed autistic as girls. This is not an accurate picture.

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Our private Facebook group supports both autistic girls and women and their extended families, but there are many more who need our help. We are now a registered charity, fundraising to enable us to both fund projects which offer face to face support and campaign for real change.

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We are a small registered charity working to support, educate, and bring change. Here you will find lots of resources.

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Neurodiversity specialist in ADHD, Autism, EHCP guidance, coaching and Pre-assessments, working with children, adults, families and schools worldwide.

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What Does Overstimulation Sound Like To Someone With Autism? (PLEASE WATCH THIS WITH HEADPHONES ON)

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Young people explain shutdowns | Ambitious about Autism

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Young people explain meltdowns | Ambitious about Autism

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Pooky Knightsmith: Neurodivergence & Mental Health