This is a diagram I made about some of the reasons why an autistic person may curse and swear, or show distress behaviour, during periods of high anxiety, stress or distress.
Anxiety, depression, trauma, OCD and other mental health situations are common amongst autistic children and young people. Not because of autism, but because they spend a lifetime being told they are a disaster, a deficit, not the child anyone wanted. They spend a lifetime being coerced into pretending they're not autistic, punished for brain events outside of their control, bullied and ostracised by non-autistic children and young people around them. Frankly the only miracle is that the mental health crisis doesn't affect 100% of them.
Failing to understand autistic distress behaviour has led to a lot of poor outcomes. I see some people misunderstanding the reasons for 'acting out', and assuming that it's directed aggression, at a particular person within earshot, for reasons of nastiness or prejudice.
It rarely is.
Autistic processing, sensory and social differences mean that autistic responses are also different. It is vital to be able to decode what's happening, if someone is in a crisis situation and using some lively or offensive language. It's preferable, of course, to have enabled life to be as pain-free and stress-free as possible for that person. But, we'll start from that worst-case scenario where there they are in distress, swearing.
First, you are going to ask them what's wrong, yes? I hope so. That's always the starting point. Asking, using communication they can understand, and giving communication methods and time for them to respond. All whilst ensuring you use skills to check for immediate safety for them and others of course. All whilst thinking about getting them to a place where they can be calmer, a pre-organised quieter space with some loved safe things. Whilst avoiding eye contact, and keeping body language, voice tone and face expression slow and caring, not fast and aggressive. That planning should always be part of any de-escalation process.
1. Are they in physical or brain pain? Yes, brains are physical things, but a lot of medics assume those are two separate features. Check for pain.
Physical - a lot of autistic people have co-occurring chronic pain conditions.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6804669/ is a starting point for you. If you're in pain all the time, and people aren't helping you with that, what is your mood going to be like? Are you just a nasty person? Nope. There's also research that swearing is one way to reduce pain levels. https://journals.lww.com/neuroreport/pages/articleviewer.aspx?year=2009&issue=08050&article=00004&type=abstract is a starting point. Not sure about that? Go watch some matenity ward shows where there's videos of people giving birth. That language isn't polite, eh. You ever drop something heavy on your foot? Did you say, "Gosh, well well, oh I say!" I doubt it.
Brain 'pain' from approaching meltdown or shutdown is very real, and a number of autistic people may use swearing as a way to warn people, or cope. Disastrously, instead of retreating, people may stay and get confrontational. Wrong approach entirely. Remember, autistic meltdown may be an actual brain event caused by electricity 'spiking' in the brain. Here's your starting reference https://link.springer.com/article/10.1007/s10803-019-03908-2
2. A response to an actual dangerous person around them. Ever been really scared of someone? Ever thought of using strong language to tell them to go away? Autistic people are a highly targeted group. Lots of good research on that sobering fact. We all like to think that all those around more vulnerable young people are nice, kind individuals. But we also read the newspapers and watch TV. "We didn't know. They seemed so nice.". If a young person is reacting strongly to someone being near them, don't make your only response to blame the autistic young person. Check what's been happening.
3. Delayed response to earlier events. Maybe way, way earlier. Autistic people are at increased risk of trauma responses, from awful things done to so many.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061115/ is your starting point for that. Trauma responses may include flashbacks, and may be nothing to do with who's in the room right now, or what's happening right now.
Autistic people may also have delayed processing of emotions, so a scary or angry-making thing from earlier may take a while to process....then whoosh, there's the anger or fear, and there's the swearing. Think about those possibilities.
4. Sensory and social overload causing a blockage in the brain's ability to process stuff. Meltdown, shutdown. Ever been stuck in the worst gridlock ever on the roads, everything round you jammed solid, no way to move. (shutdown) You're tired, you need the loo, you have things to do and you are Stuck In That Traffic? How do you feel? You may want to swear. How about when you are desperately hungry? Are you calm? Or do you get 'hangry' - in a bad mood until you can eat something?
Read http://annsautism.blogspot.com/2018/07/roundabout-hypothesis-guest-blog-by.html about Roundabout Hypothesis by Chris Memmott. Many have said that is a very helpful tool for thinking about autistic behaviour and responses. Our job as allies to autistic people in our lives is to unjam that brain's 'roundabout'. Signals like hunger, thirst etc may be confusing or painful mysteries in the 'traffic chaos'. A simple checklist of 'what do I need right now' might help. So does that quiet space to let the traffic get sorted out. Once that 'roundabout' in the brain is cleared, we can function again. Shouting at us during peak traffic is doomed to failure.
5. Mistaking who's who. Lots of autistic people are faceblind. (Prosopagnosia is the formal word for this).
https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1469-7610.2010.02258.x is one piece of research discussing this. In other words, we may have difficulty seeing which person is which, from their faces. We might recognise them only when they have a particular neutral expression. Or when their voice is calm. Or when they are wearing particular clothes, or have a particular hairstyle. Perhaps the response was meant at a completely different person, and they have mistaken one person for another? Check this.
6. Responding to a conversation in another room or space nearby. Autistic hearing can be extraordinarily sensitive. It's quite possible for many to hear conversations that are inaudible to others. For example, people discussing the autistic person in a dismissive way, in another room nearby, feeling sure that they can't possibly hear. They probably can. That needs some thought, because the and 'behaviour' that may result from that may look as if there's no cause. Or may look as if it's aimed at the people in the current room. Check. And - be aware that if you ask whether an autistic person can 'hear voices', they are going to be honest about how many people they can truly hear, chatting, all over the building and outside. Some have mistaken it for a sign of mental ill health. Nope.
7. Tourette's Syndrome or Tics. Quite a few autistic people also have tic syndromes, which may involve saying random words or phrases, which may include swear words. Especially when stressed or in sensory difficulties, it seems. Worse still, for some, the more they think about not saying a particular word, the more their brain uses that word as the 'tic'.
Here's an example. A Venn diagram of the overlap between autism (ASD), ADHD and tics (TD).
It's from this research paper
https://www.tandfonline.com/doi/full/10.1080/08039488.2018.1444087
So, are they really being prejudiced? Or is it a brain event where it can't stop itself saying the one thing it's not supposed to say?
8. Copying others. If an autistic person has heard lots of other people saying it, perhaps they think it's OK to say. Trying to work out what situations are OK, who is OK to say it in front of, and when to say it, is all very complex. Autistic social communication and social 'ranking' is very different, so this may be a genuine set of misunderstandings between the autistic person and the person trying to explain the rules.
9. Exhaustion. More and more research happening, showing that autistic people are desperately short of sleep in today's busy, noisy world.
This is just some of the possible reasons for distress behaviour, anxiety and anger. There may be others.
It could well be that an autistic person really doesn't like someone and indeed is really intending to be angry at them. Or maybe they just like swearing. Some people do. After all, we're all human. But that's rarely my first thought. Whilst autistic people have their own straightforward social communication system, most autistic are polite when it's appropriate and possible to be polite, and very keen to follow whatever rules they can cope with. So, investigating is really important.
Get expert advice in to decode situations that have become serious, before they become catastrophic for the person. Misunderstandings can so easily escalate, and the young person may find themselves in deep trouble because people haven't understood what was actually happening.
Thank you for reading, and learning to be the best allies you can be.
So, you're autistic.
Who do you tell? When? How? What will happen, as a response?
Unknowns are scary enough for most people. For autistic people, often it's far scarier. Our social circles are often smaller to start with, and we may have grown up in a world that has wanted to see our naturally-different social communication as 'rude'. The thought of losing a friend or partner can be a huge thing.
Responses from others do indeed vary.
For me, a diagnosis was a fantastic thing, overall. It enabled me to know more about myself. To seek out my own people. To embark on a journey with teams to get good information out there, wherever we can. But it was not without cost, at times.
Who responded well? For me, I was very fortunate in a way to be in an autistic family, so it was affirming for me, and for those around me in the home.
Most friends and colleagues weren't in the least surprised, and coped beautifully.
Some were a bit shocked, as they hadn't expected that news, and edged away, but recovered. Although I think one or two are still in a bit of a state of shock....
Others pretended they were adapting to the news, but then turned away. I found out more about them through that than anything else. That what they wanted wasn't me. It was a masked version of me. That's not OK in any friendship or relationship, to want the person to be something they are not. Autistic people don't mask our identity as a way to lie to others. It's out of fear of ostracism, fear of targeting, fear of loneliness. That mask can be difficult to drop after years or decades of keeping it in place. But the clues of our autistic identity will always have been there.
One or two colleagues and contacts had ancient myths of autism and truly thought it was some weird combination of mental health crisis situation and psychopath, which is actually hilarious since it's pretty much the exact opposite of that. They caused serious damage in their own personal hysteria. So avoiding further contact with people who turn it into nastiness can be really important for health and wellbeing for us.
But, generally, it was great.
Does everyone in my life know? For me, yes. But I'm a national figure, so it would be difficult to hide it now.
Not everyone knows everything, though, for sure. In other areas of marginalisation, very few know. Very selectively. That's a personal choice.
For some people, 'coming out' as autistic is a dangerous thing. Prejudice and hate, misunderstanding and anxiety might result in lost jobs, for example. That should never happen, in a world that should be cherishing generally honest,loyal specialists. But it does, sometimes. There can be a risk of being further targeted by predators, for some. So that has to be thought about too.
What of a marriage or partnership, though? A close romantic relationship of some kind? What happens when one partner gets a diagnosis?
It's a variable. For many, it's a relief for both people. A better way to understand one another. An explanation for why the autistic partner finds some things so hard. A reason why they may miss unspoken clues from one another on such a regular basis. A chance to rethink how to navigate things.
For some, it's a new reason to hate. And a reason for the autistic person to have to think carefully about whether they want such a response in their lives. A good relationship counsellor who is trained on modern autism (not ancient myths around lack of empathy, rigid behaviour etc), is opften important in decision making, if so.
Both people need to learn each others' language. Autistic social communication is naturally different. Autistic responses to social events are naturally different. So are our responses to the environment around us, to sudden changes of plan that may lead to unknown sensory and social overload and a dreaded, painful brain event (meltdown or shutdown). We're right to be sometimes wary, to be cautious, to be reflective of what we can and cannot do. And a partner who trusts and respects that is vital in our lives.
For some, it's a chance to find our herd, our people. To forge new relationships online with other autistic individuals. To find ways to share hobbies, interests and romantic life with people who can understand us because they speak the same basic language. And for others, it's a good way to explain difference and share life with non-autistic allies; partners who cherish who and what we are, and enable us to thrive in ways that work for both.
As with all things in life, individual decisions are important.
Stay safe.
Look for those who love you for you who are, whether as friends or as deeper partnerships.
Those are people to be cherished.
"I don't understand it. We had a fantastic time, at the social events. Then, afterwards, meltdown. Or they just wouldn't talk to me at all. How ungrateful is that?"
A common response from some of those around autistic people. Sometimes it spreads to other thoughts. "Perhaps it's actually bad for them to see those people. Perhaps they need isolating further? They're often upset afterwards. Is that person a danger to them?"
A lot of potential damage can be done by misunderstanding 'social hangovers' and autistic people. Being clear that if someone is a potential actual danger, of course it's right to investigate that.
Let's see if I can explain more about 'social hangovers' and autistic people.
Firstly, many autistic people actually love being with non-autistic people for a while. But it's hard. For us, and for them. There's a lot of 'interpreting' going on, between the two neurotypes. Autistic and non-autistic people speak a different set of social languages and signals. So both can end up very tired. (Real research behind that - truly we speak different social languages)
Secondly, a lot of socialising is done in a space with a lot of noise, smells, chaos. See https://vimeo.com/52193530 for details. Turn the sound right up. Two minutes you'll never regret seeing, if you want to understand autistic sensory differences. Sometimes patterned or grill-effect walls and fences can cause 'sensory static' for autistic people that becomes more and more difficult to process.
Autistic brains can handle about an hour and half of that chaos, if we really put effort into it. Some, far less. Some can do more. When we reach 'stop' it's really hard to work out what's happening, for some of us. We know we feel overwhelmed - but this is fun. We want to be with the person. So we don't notice the 'stop' signals our bodies are giving us.
Then, back we go into a building where they may be more sensory hell. Perhaps noises, echoes, smells, flickering lighting...and we've no brain room left to process any of it. Not even to explain it properly. Another set of people try to interact, and whoosh - meltdown. A brain event. Not in our control. Or, possibly into shutdown. An inability to move, speak. (Those may be more common, by the way - and are often mistaken as defiance or rudeness). Mine are shutdowns. Not spectacular to look at. Hugely horrible to experience. Like being totally paralysed.
So, what's actually going on? Are we ungrateful spoilt brats who need a good smack? (A view I've heard a few times too often). Well, no. Absolutely not. We're struggling to cope with a brain that processes the world very very differently to that of others. No matter how much we love them.
What helps?
Ask
Consider advance sensory and social info. Photos, plans of the space. Thinking about the lighting and the noise levels. A simple free decibel-checking app on a smartphone can give you a good idea of how noisy a space really is. Anything much over 30 decibels (dB) is loud to most of us. You'll be shocked how many spaces are above 30 dB.
Thinking about planning how long to spend with the person. And making sure they keep eye contact to a minimum if they can. Allowing time to answer questions and knowing that we may respond with 'I'm fine' as a reflex, not an actual answer. This is where knowledge of an autistic friend or relative is so important - learning to 'tune in' to how they are. A good reason to keep care teams stable and familiar, wherever possible.
Thinking about how to stop from time to time, to 'tune in' to body signalling that it's had enough. Definitely important after that first hour and a half. A break is always a good idea.
Knowing that, once the socialising is over, we can retreat to a quiet place without people clanging and clanking things, chatting and otherwise causing chaos around us.
Knowing that, if it's gone wrong and we enter meltdown or shutdown, we're not going to be punished for it. Some are, and it's as wrong as punishing someone for having a diabetic low sugar incident and collapsing from it.
Being able to decode how we felt, afterwards. That can be hard, and take time. It's easy to mistake a 'social hangover' - low mood, anxiety etc - for any number of things it's not.
Thank you for learning a little more about autism, and for attempting to find ways to share our life's journey.
These are personal reflections, not professional advice of any kind.
Sometimes, autistic young people are placed in secure accommodation. Perhaps because of a mental health crisis. What happens when they recover enough to transfer elsewhere?
One of the questions often encountered is, "How do we find the right community placement, and how do we make that transfer in a relaxed way for them?"
Let's think about some of the absolute basics of this. It's not a definitive list or professional advice for a particular individual. It's a start to good thinking and planning. I write it from decades of personal experience, as someone who was carer to a desperately ill close relative for many years, and had to engineer those transitions. And as an autistic person who works with teams planning exactly these things, with the young people, and with their families.
First, clearly any autistic young person who has been in secure accommodation will have had a tough time. Perhaps separated from family and friends. Perhaps coping with living in tiny spaces with terrible sensory difficulties; flickering fluorescent lighting, endless echoing noise from around them. They may be exhausted and desperate to get to somewhere better...but also very afraid of having the mental and practical resources to cope with something new.
What to do: (This applies to families, and team members, working as a team to support that young person and their own aims, where those are realistic, of course).
Work out what's possible in terms of the next step. Find a couple of possibilities for places they could move to. And find out everything you can about that building and that location.
I start with a personal visit.
I am using autistic hearing to detect soundscapes that others miss.
I am using autistic vision to detect flickering or intense lighting that may need thought.
I'm thinking about the odours in a place.
I have a decibel meter with me to measure sound levels, and I'll move from room to room, standing in each corner, seeing what it detects.
Then thinking, 'is this going to get noisier once people arrive...in rush hour traffic....if a school nearby has breaks or school traffic....if there's noisy aircraft overhead".
I'm looking at shadows and thinking about where sunshine may shine in, blinding people. Where trees are likely to cast shadows in winds, causing a swirling pattern of confusion on the floor. All sorts of things can be a 'frightener' for those who see and hear differently, and a lot of those things may be overlooked by non-autistic people. Not a fault - just a different set of experiences in encountering buildings. Below, a photo of a surface with leaf shadows on it. Imagine those as a swirling pattern in the wind. Disorientating for so many of us. So I am working out where a young person may walk, and how to make it safe for them.
I look round the neighbourhood. What's out there? If you have someone who loves nature, how do they get there without having to navigate heavy traffic and crowds? Is there a safe garden area? What's the sound level like out there? Is it overlooked by a load of houses or flats, which can be intimidating? I'm mindful of water, given that a lot of autistic people struggle to see the difference between water and grass (for example) when in sensory stress. This, how I see a pond and tree, if on the edge of shutdown. I'm sensible enough to stop. Younger people or those in greater distress may run.
So somewhere without open water nearby may be a better choice. Also, think about children's playgrounds. I've seen placements break down because the autistic young person is distressed by playground noise at random intervals through the day. Think about any autistic young person who sometimes needs to take their clothes off to feel comfortable; are there windows facing onto such public areas? If so, can those be given obscured glass to shoulder height, for example?
I think about the layout of the property. Is their bedroom going to be in the quietest possible corner of the property, away from thudding up and down stairs, away from noisy central heating pumps clunking and loos flushing? Those things can be a living hell for people in a seemingly nice property. Carpeting can really help with some of the noise transfer from room to room. In fact, carpeting is one of the biggest obstacles to success, for many. Highly patterned carpet can make transfer between rooms into a hell. Rough carpet can cause pain in every single step they take on that surface. A soft, moderately thick, cleanable carpet in a neutral colour is often a wise choice. Really soft rugs by the bed help, too. Those first moments when you swing your feet off the bed. Think about that bed. Find a quiet mattress, quiet pillows, a quiet duvet, ultra-smooth sheets and pillowcases. I'm serious about how noisy some beds and pillows are to our hearing. Lie on it. Move. Really listen. Crinkle, sproing, crinkle crinkle, sproing...no wonder so many autistic people are awake half the night.
OK, so we've found some possible properties? Let's show our young person. No, not in person yet. By photo and video, description and gentle chatting about it when they can. A virtual walk through, quietly, slowly, so they can see what's there. With plenty of time to process it. No quick decisions.
Let them think about for a couple of days, if possible.
If they want to then visit, you are going to plan this like a military operation. Er, without camouflage kit and tanks, I hasten to add.
Who is taking them? Make it their choice of absolute favourite person, their most trusted guide, if possible. And a quiet kind spare person.
How will they get there? When? How long for? Plan that journey with them. Google Street View can really help. Which car or minibus? What can they take in the vehicle to help them keep their brain operating at its best? Don't judge. If it works, it works. Keep chatter to subjects they want to talk about - their favourite hobby, in ways that they are comfortable with. Chatter of course can be through technology or picture, sign or sound, not just words.
What will they be wearing for this trip? Think about their choice of most comfortable outfit possible, including their comfiest shoes and socks etc. Keeping everything really low-key, really relaxing. The rest of the day's routine known and predictable. A known and predictable leaving time, arriving time, amount of time there. returning time, and what's next.
Let them know how to signal they need to leave, and give them confidence that they can do so any time, without fuss. If they can't make it in through the door, totally OK. Never knowingly overface them unless there are 'life or death' reasons to do so.
Let them know where a quiet corner in that new place will be, if they just want to 'be' in it rather than explore. Or back to the vehicle to chill out for a while.
Don't pile a load of choice onto them, e.g. "What colour would you like the walls, do you want to choose a new sofa, where do you want your bed", etc. First visit, their brain is filling with the sensory stuff. Add social stuff on top, and it's risking a brain event. If there's others in the accommodation, best if they can be doing something quiet elsewhere, where possible. Lots of us benefit from a choice from only two options, rather than endless ones.
Know your young person. Watch for signs that they are reaching 'can't ' and work with them to guide them back to the vehicle and back to their current accommodation, quietly and gently. Keep chatting to an absolute minimum.
You may have to repeat that a number of times to get them feeling really confident that they can go there, cope, and return.
Think it's going to work? OK, who's going to be their fabulous, kind support team in that new location? I'm not that interested in how many behaviourist qualifications or autism qualifications people have. In fact, behaviourists often have to unlearn most of their training to be any use to autistic people, as they are trained to alter who we are, not think about their own interactions and impact on us. Yes, there are some good and kind people out there with a positive-behaviour-support past. But it's absolutely no guarantee of that vital relationship and trust.
Aside from essential training and essential safety checks, I'm interested in one thing. The only thing proven to be a factor in success: are they someone I'd trust with my young person's life? Are they the sort of person who is just so pleased to be in the life of this young person, and wants the very best for them, as a friendly equal? Yes, of course a leader when needed, and a wise guide. But truly respecting that young person's boundaries and past, and willing to listen, learn, and share cheer with them. It's that relationship that is critical for this transition to work. Calm, friendly, relaxed, personally confident but in a gentle way, not an overbearing one. Willing to accept they'll make mistakes. Willing to take personal responsibility for their fair share of communicating differently. Willing to let the young person be their authentic selves, in safety of course. I see rogue teams who strip a young person of everything dear to them to get 'control', with use of restraint, coercion and physical intimidation to get results. I won't have that.
Any relationship takes time to establish, so your fine young person has to meet them and decide if this is the right person for them. Or the right team. Then gradually share more time with them. Do they respect the autistic person's own communication methods? Do they understand that autistic people use different body language and movement? That they have a different culture, a different way of encountering objects?
What about buying them new things? Please don't whizz them straight out to the shops. Those are sensory hell.
What do I mean? Watch this. Two minutes. Turn the sound right up. Brace yourself. https://vimeo.com/52193530
Wow, eh? That was just two minutes. Imagine what it's been like in some care settings. Imagine what it's like in noisy 'social spaces'. In supermarkets. In some shared accommodation with shared eating spaces.
So much can be looked at online these days. If they really really want to go to a shop for new things for the new accommodation, plan it as carefully. Walk them through all the steps, online. Work out whether they will need noise cancelling headphones, sunglasses, baseball cap, or whatever else works to take down sensory load. Watch for their signal that they need to get out of there fast; some will not know their own boundaries with this, so plan a short visit at a quiet time of day. And absolutely loads of downtime afterwards with their favourite things. It's as exhausting as running a marathon, for us.
There will be some back-steps as well as successes. Let them know that they can trust you. That you're not going to push them further than they can go. It may well trigger big anxiety for a while, so being that utterly reliable presence will get them through so much.
Let them be them. Not some non-autistic person you'd prefer.
You've no idea how much of a blessing it is to be allowed to be us. Us, not an inauthentic poor copy of a non-autistic person. Actually us. Able to communicate as us, move as us, encounter objects our way. Learn our way. Socialise our way.
If all has gone well, you may have a young person able to restart their life and really thrive. Step by gentle step. With family support. With good caring teams, good enablement by occupational therapists, trauma-trained & modern-autism-trained counsellor or similar therapists if needed. Each relationship one of re-establishing 'are you safe?' 'do you let me be me?' And with trusted autistic specialists who can help interpret, help problem-solve when situations arise. That's what we're here for. Vast experience amongst autistic specialists.
These are some possible tips for success, from personal experience, meant only as a thinking point. It is not in any way meant as individual advice for a particular situation. For that, you'd need to hire an adviser.
You'll have your own ideas, too. Each young person is an individual, with their own individual path ahead.
Whatever path lies ahead, may your young person truly thrive, and may you as parents or carers find the relief and relaxation, support and cheer you need also.
It's been quite a journey away from tragedy-thinking, for me, and of course for so many others working in the autism industries.
For those looking for respectful and appropriate ways to aid autistic children, may I recommend the following approach:
Change the narrative.
In other words, instead of seeing deficit, disorder, disaster, tragedy, fault, choose to see humanity, uniqueness.
Instead of seeing 'manipulation' by a child, choose to see a desperate attempt to meet a need.
Instead of seeing a deliberate attempt to 'get attention' by self-harm, choose to see distress behaviour as a possibility, and consider how to check for pain, illness, injury, sensory environment difficulties, fear, trauma, exhaustion, need for processing time.
Instead of seeing the 'fault' as being within the autistic child, choose to think about what of your own behaviour, your own approach, your own timing and expectations, *may* have led to a situation or made it worse.
Instead of seeing normalisation as a goal, choose to consider whether different is OK. Obviously keeping safety in mind, of course.
Instead of seeing it as a battle to be won, choose to see it as a chance for both to learn together, to take time out to calm and re-centre.
Seek out autistic specialists who can work on sensory environment triggers that non-autistic people cannot always detect.
Seek out autistic trainers and their allies, working together to bring authentic first hand experience as well as knowledge.
Instead of believing that no autistic child can learn skills without crushing workloads from a particular team, assume competence. Believe they can learn in their own time, with the right support from the right professionals.
Instead of believing that autism equals low IQ, think about using different testing systems.
Instead of believing no verbal speech equal no abilities, think differently.
Most of all, be a role model for your fine young person.
Be the ally they need. A friendly presence. A reassuring and calm personality. A gentle and considerate companion.
And watch them thrive.
It took me a while to figure out. That's human nature, isn't it.
We all learn.
I'm grateful for many individuals over many years, who have challenged, provided me with materials that have caused me to think and reflect. And I am especially grateful for the narratives from individuals who have had treatments and therapies that have left them deeply damaged. I very much hope that, together, we can all learn to do better.
I'm not Black.
I try to be an ally, though.
Why do I try to be an ally? Partly because of watching too many of my colleagues, friends and customers from Black and Minority Ethnic* groups being treated poorly. Being ignored. Being left out. Being ostracised. Being bullied. Having to work harder every day than any person passing-as-white does. This and so many more problematic things they encounter daily.
I don't know what it's like to be Black.
Curiously, though, I know what it's like to experience some racial prejudice.
Have a look at my surname: Memmott.
Most people guess (incorrectly) that it's Middle Eastern. From that, they begin to guess that I'm married to someone from one of the Middle Eastern zone of countries, perhaps Muslim. Perhaps Jewish. That I must be of a different faith. On a good day, I get people asking me if I'm OK to eat pork, or need a specific menu. On a bad day, things get pretty bad. I get outright hate from some, based on their misunderstanding and their prejudice.
As an experiment, we sent out a request for information to 25 different places. Twice.
The first 25 used my current surname.
The second 25, to the same people, used a different surname, one that is normally associated with being white British.
We received one response, when using the name Memmott.
We had a response from nearly every single one of those 25, using the allegedly-white-British surname.
We repeat that experiment sometimes. The results are never very different.
We've also been running a 30 year experiment with restaurants.
Giving the name Memmott gets us a seat near the toilets on nearly every occasion.
Giving a surname arguably white-British gets us a good seat on nearly every occasion.
I don't think most people have any idea of the level of unconscious bias and/or outright prejudice out there. Most people, when asked, would say 'of course we're not prejudiced - how absurd!' But the unconscious bias thing is strong.
Just a couple of examples. But 30 years of experience of those misunderstandings is enough to give me a little insight. Not enough, no. Nothing at all like the lived experiences of those who are in the Black and Minority Ethnic communities every day of their lives.
Another example of unconscious bias, perhaps: Our business (separate to my autism work) handles property valuation for a vast number of properties across the country. Whilst many of our valuation customers and rival firms are superbly wonderful, some show some strange behaviour when asked to do work for BAME communities of any kind. Generally, they try to give us the work, as they think we're Middle Eastern somehow. Thus, we spend arguably a majority of our time valuing Temples, Mosques, Synagogues, & business premises of all kinds which are run by people of a vast number of ethnicities and backgrounds, nearly all Black or Asian. It's been brilliant. I won't say we are experts in everything, because there's always SO much more to learn. But goodness me we have enjoyed 30 years of visiting and working with groups of all kinds, attempting to learn as much as we can, so that we can treat everyone with the honesty, integrity and fairness they deserve, and the respect they deserve. We hear a lot of stories of how they are treated by a few other firms. Not well.
It's a considerable Privilege to be able to give a different name and hope for the best, for sure. Our Black friends and colleagues, for example, don't get that option when they turn up and are greeted with surliness instead of friendliness.
So, it's up to people like me who have degrees of white-privilege to do what we can to boost the voices of those who don't. And to keep learning, keep challenging ourselves. Keep challenging others.
Why is this important for autism? Because of those myths that it's all about young white introverted boys.
People from minority ethnic groups are often denied diagnosis, because too many professionals aren't looking for autism in those groups. Some think it's a white-people thing. Especially true for older Black people, or Black females, for example, I believe, who are very rarely assumed to be autistic.
As a result, too many lovely people are left to flounder, unheard, and unrepresented. Unresearched, unsupported. Or given incorrect labels and diagnoses.
We can do better than this. We must do better than this.
Find voices (by which I mean communication of all kinds) from people of all kinds. On Twitter for example, you can try the hashtags #AutisticWhilstBlack #BlackAutistics #AutisticPOC or #BAMERAutistics
Ensure your conferences have people from different minorities, different ethnicities, different backgrounds, wherever possible.
If you're a diagnostic professional, e.g. Psychiatrist, think laterally about people who visit for support. Too many face misdiagnosis or lack of diagnosis because of that unconscious expectation that it cannot possibly be autism unless it's a young white boy. Or, at best, a young white girl. https://link.springer.com/article/10.1007/s10803-017-3176-3 may be a helpful starting point, showing the bias in the diagnostic criteria, for example.
Do I get being an ally right all the time? Nope. But goodness me, it's worth attempting. And continuing to learn.
I have daily lived experience in several marginalised groups, only two of which involve me being 'out' in public. This post isn't about what happens when I disclose any of my own actual differences. They take up much of my time and energy every day, wading through LGBT+ prejudice, autism prejudice, etc...for me and for some of my family. But having this surname has been such a 'wake-up call' to me about racism.
Why not just change to a different surname? Because I am fed up with a world that sometimes sees difference and wants to hate it, ignore it or exclude it. Or which puts people who are different next to the toilets. Really, really fed up.
None of us should have to hide, or fear.
All deserve equal respect. Equal love.
All are of equal worth.
Thank you for reading.
*sometimes abbreviated to BAME
Above, a drawing representing a diverse group of autistic people.
I'm a neurodiversity supporter. I want all autistic people to thrive. All of them. All of those in care home settings. All of those with a lower IQ. All of those with higher support needs. All of those who do not work for a living for many reasons. All of those who also have mental health conditions. All of those who use different forms of communication. And all other autistic people.
I am the parent of an autistic individual. For some years, I was carer to a family member in a high secure setting, with very high levels of support needed around them.
My work for the autistic communities is largely around those in care home settings, ensuring they have the best possible care, and ensuring their families feel supported and listened to also.
My academic studies currently look at how to help autistic people who are victims of crime (many of them with higher support needs). My studies also look at the best ways to enable respectful and positive education for all autistic people, and respectful and positive healthcare for all autistic people.
Neurodiversity support does not mean 'I only support the elite'. Nor is it anything to do with hating parents or wanting them separated from their children (unless their behaviour is actually abusive, in which case that is a matter for social care teams, not me personally).
Neurodiversity support means we accept that autistic brains are neurodivergent, in the same people as that group of people in the illustration here is diverse in other ways. It does not deny that some need support, and that some may need assistance for anything medical, e.g. epilepsy, food intolerances, mental health conditions, or for learning disabilities.
I do not believe that describing autistic people as tragedies, to be normalised through coercion or genetic tinkering, is in any way helpful, for anyone. This huge study on the Autistic Not Weird website included lots of people with learning difficulties and lots of people who do not use spoken language. Very few saw themselves as tragedies in need of a cure. Look how many strongly disagreed that they should be 'cured'. Neurodiversity work isn't about ignoring their voices. It's helping ensure their voices are heard. Their voices, not those of their relatives, or scientists whose work will profit from cure-treatments.
I respect individual choice, though.
I think people have us muddled up with supremacists, a completely different small group of people who believe they are better than others. I don't think I'm better than anyone else, or worse than them. Just different. Just like I was as a non-speaking autistic child, rocking in a corner. I spent a long time learning skills. So many do. But every person is worthwhile. Every person deserves their human rights, and people around them they can trust.
I see too many parents putting up awful personal details about their autistic young person's toileting habits, or videos showing them during times of distress and crisis, saying 'This is what Real Autism is like!'.
We're all real.
We all deserve not to have our dignity and privacy ignored.
All deserve a life filled with caring and thriving. Whether autistic or not.
I hope that's helpful.
Thank you.
https://autisticnotweird.com/2018survey/ is the survey link
This week, I read something very strange.
A school, catering for autistic pupils. Age 3-19. About 150 pupils. It's run by behaviourists who use a form of ABA (PBS) on the pupils.
I scanned through its policies, noting the ones that list the endless forms of physical restraint they permit:
Friendly escort. Single Elbow. Figure of four. Double Elbow. Single elbow (seated).T Wrap.
T Wrap to seated. T Wrap to ground. Cradle. Front Ground Recovery. Back Ground Recovery .
The list continues.
So, including face-down restraints that I was under the impression were now pretty much banned after major safety concerns and deaths internationally.
I read the latest OFSTED report for them. Well, that was five years ago. But there was a more recent mini report for them from these school inspectors.
The inspectors said there was no bullying of any kind at all.
And, for me, that was a heartstopping moment. Not in a good way.
No bullying.
At all
None
Not from any pupil to any other pupil
Not from anyone.
Not at all, all year, perhaps year after year.
Really?
I'm sorry, but I don't believe them. I want to, but this isn't fairyland.
So what can 'there's no bullying' possibly mean?
That the school staff are clueless about spotting it?
That they are forbidden from recording it, because it makes the school look bad?
That they are choosing not to record it?
That they have recorded it, but the information wasn't given to OFSTED?
That the pupils are terrified of saying they're being bullied?
That the pupils aren't given the means to report bullying?
That the pupils are 'gaslighted' into believing that what happens to them isn't bullying, that it's actually an OK thing to do to them?
That someone outright lied to the inspector?
I would find 'there's no bullying, honest guv' to be the biggest 'red flag' I can imagine.
Wouldn't you?
Updated February 2022
For decades, we were told that nearly all autistic people mostly have a low level of intelligence - a low IQ. This is a big part of being diagnosed with a 'learning disability' or 'intellectual disability' (shortened to LD or ID)
This was based on a misunderstanding of autism, and a misunderstanding of which IQ tests work for us.
An average person has an IQ of about 85 to 115. Very few have an IQ below 70 or above 130. If we make a chart of any big group of random people, it may look like this. Along the bottom, their IQ scores. Along the side, how many have that IQ score.
So, normally for most people, only about 2 out of every 100 people will have an IQ low enough to be classed as an intellectual disability. (2% means 2 people out of every 100 people, for those who don't speak a lot of maths)
So, about 2% have an intellectual disability. There's a lot of difference in skills, in that group. Normally professionals divide that 2% into four groups. These are shown in the table above. The standard groups are mild and moderate, which is nearly all of those with intellectual disabilities. And then severe & profound, which is a very small number of people indeed. Every one worth care, consideration, being heard, being safe, and having a full set of human rights and proper support. We learn, through this and through asking people with learning disabilities that most people with an intellectual disability can read and write. But we're routinely told that people with intellectual disabilities cannot possible understand or respond to simple questions or access any social media. Isn't that odd.
What was our belief about IQ and autism? Here's some typical older research:
1988. Smalley, Asarnow and Spence decided that only a quarter of autistic people had an IQ over 70. The rest, three quarters of autistic people, were believed to have a learning disability/intellectual disability. Not 2 out of every 100. 75 out of every 100. That's a huge huge number who were believed to have a LD, eh.
By 2010, Fernell and team had written research suggesting about 40 out of every 100 autistic young people had a LD. (40%) So, the percentage was dropping.
For 2012, the USA did major research on autistic children and young people. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6237390/
It has some interesting stuff in it.
Among all 3,353 autistic children they looked at, on average about 31 out of every 100 had a LD. So that's lower, again.
But it varied, a lot. In some States, like Utah, it was only about 20 out of every 100. In others, nearly half the autistic children were said to have a LD. Are they too-often only diagnosing autism if it resembled a myth of low IQ?
And it varied by gender, too. 37 out of 100 autistic girls had a LD. Only 30 out of 100 boys. Are they too-often diagnosing autism in girls if they also have a LD?
Fast forward to 2019, and we have a very useful brand new study from Scotland, who looked at nearly all their children in the 2011 Census. This is the link to their work:https://bmjopen.bmj.com/content/9/8/e029040.full It's not a study of IQ, but it has info within it that is fascinating.
"...Of the children and young people with autism, 15.0% additionally had intellectual disabilities, and of the adults aged 25 years and over with autism, 29.4% additionally had intellectual disabilities."
So...when they crunched the numbers for the whole of Scotland, for autistic children, only 15 out of every 100 autistic children also had an intellectual disability. We can assume that most of those are able to read and write, because we already know that most people with intellectual disabilities fall into the mild/moderate band.
Fast forward again to This new study about English autistic children which looked at nearly 120,000 autistic pupils in England who were in state education. Of these, the authors say 18% had "learning difficulties". This usually includes e.g. dyslexia as well as learning disabilities, so we may assume that the figure for learning disabilities (intellectual disabilities) is lower than 18%.
What's going on here, then? Why all these different numbers?
Well, it depends what we're measuring, and how.
First, we need to find all the autistic people. That's not been easy. We had those myths that autism looked like an antisocial young white lad with a low IQ or a total focus on trains (or both...), and of course little or no speech and deeply unusual behaviour. So we missed e.g. the females, Black autistic people, Asian autistic people, extraverts, older people...in fact nearly everyone.
Some countries, and some States, were better at finding the missing people.
Some countries, and some States, were still assuming autism looks like a low IQ and definitely male.
The only way some females got diagnosed is if they also had a LD, and also had some pretty unusual behaviour. The rest weren't discovered, weren't measured. Or were routinely told they couldn't possibly be autistic, and turned away by the first professional they saw.
Then, there's how we measure IQ for autistic people. We'd often been using the wrong tests, it seems. Using a Raven's test, the IQ results for autistic people are way higher than we'd realised, for many. Here's a chart where people realised the error. Bit technical, so feel free to skip this explanation: Four sets of bars. Each shows a different IQ test. First two bars in each group of four is the results of female and male autistic people. Second two bars in each group of four is the results of female and male non-autistic people ('controls').
The first three IQ tests showed a whacking great difference between autistic people and the non-autistic ones. But look at that Raven's test. Hardly any difference at all. Have we been accidentally putting a lot of autistic people into the 'intellectual disability' group when in fact their IQ is pretty normal?
It's all quite a challenge, eh?
So....as far as we can tell from the Scottish data, about 15 out of every 100 autistic young people also have a LD. And the rest do not. But if you're older, it's become clear from wider research that there's more chance of you being missed from diagnosis, because of the myths. Maybe, if we used the right IQ test, it would be even less than that 15%. I suspect it'll be no different to the rest of the population, to be honest. But I can't prove it....yet...
A lot of what we thought we knew about autism has been wrong. A lot of the alleged costs of autistic people was based on the old data about low IQs. A lot of the assumptions about our abilities and employability was based on those old myths, too. Autistic people who can read and write are routinely told that there is a mythical 30-50% of autistic people who cannot communicate at all. And, on that basis, anything we say is only representing one of two more-or-less equally big groups of people. Mmm. Every person needs enabling to communicate, and the needs of each person matter. But we don't need to invent huge numbers of profoundly intellectual disabled autistic people, do we.
We need to get a grip of what autism is, and is not. It's not a learning disability, although some also have a learning disability. And we need to move firmly into 2021. A 2021 where autistic people of all kinds are valued, whatever their IQ. Not seen as burdens and costs, but as marvellous people with so much to offer. My other blogs talk about the honesty, integrity and full humanity of this wonderful population.
We need to stop scaremongering about autism. If you have an autistic child, it's very likely they can lead a lovely life - of varying sorts, if found, evaluated correctly, and enabled and supported properly. I've seen too many parents brought to absolute hysteria about 'all autistic people are wrecks incapable of doing more than crayoning, who will live in nappies forever!!'. Not a pleasant way to describe anyone, let alone with such inaccuracy. Just rude, really. Incidentally, autistic people are no more likely to be incontinent than anyone else, and an awful lot of adult women in the general population have degrees of incontinence, for example. Are they leading awful lives? Generally not. Though it would be great if science could do more to assist, of course.
That scaremongering is costing a lot of lives, in forcing autistic people to live under-employed and undervalued lives in the margins, instead of as welcome and loved people. In forcing people to be less than they can be. In routinely underestimating what many can do. In routinely ignoring any of us who are able to communicate, in a quest to believe that 'real autistic people' cannot do so.
Every autistic life is a life of full worth.
Let's do better, eh? We can. And we will, together.
Thank you.
PS - further research on how many autistic people may have a lower IQ? Only feel comfortable hearing statistics supported by non-autistic-led charities? The National Autistic Society's preferred journal, Autism, wrote about this study
https://journals.sagepub.com/doi/abs/10.1177/1362361316682621?journalCode=auta which shows about a quarter of the autistic people had an IQ lower than 70.
Recent research (link below) and key researcher interview suggested that diagnostic teams were getting too vague in the way they diagnose autism. That there was now little difference between autistic and non-autistic people. That it was too easy, and that people could get a diagnosis for trivial differences in numbers of friends, or if they found clothes to be a bit scratchy. This, from an online article re the research.
Is this true?
Let's have a look at their research paper.
I sense that we're not off to a winning start in the opening paragraphs. "..our understanding of autism has evolved from a narrowly defined clinical picture to a spectrum of conditions of uncertain similarity". Well, no. We dropped Asperger Syndrome and PDD-NOS etc, and we dropped the assumption that autism = learning disability or autism = no speech. So in my view, the criteria became more clear, not less clear.
Picking up pace, the authors then assert, "There has been an increase in the prevalence of autism from less than 0.05% in 1963 to 1.47% among children aged 8 years in the United
States and to more than 2% in studies measuring lifetime prevalence through less stringent case ascertainment". Translating for those who don't speak academic, a cheeky assertion that diagnostic people got sloppy, which is why there's now more cases.
Well. That'll make for some frosty receptions with diagnostic teams, I'd say. Most of whom are highly professional people who are trying to keep up with modern reality around autism.
Let's step back and think about the ancient myths of autism.
That top picture, on this blog. Imagine that's a few hundred people. All of them autistic.
All share the same naturally different body language and social communication system (although many have had it 'trained' out of them, so they no longer dare use it).
All have a passionate focus on topics, some becoming world experts in those.
All have different sensory experiences, some of which may be difficult in what is now a busy, noisy world. But, sensory experiences and differences that can be of value, can be a great source of joy.
All are people of worth, whatever their set of characteristics, whatever their additional diagnoses.
Way back in the 1940, a couple of people identified the ones in the circle. Young, white boys, little communication, introverted, really different behaviour, etc. They were believed to lack empathy, to lack 'theory of mind', to lack the ability to plan and learn skills. "That's autism!" they declared, more or less. The belief, that they were like that for life. It was an idea that kept going for decades. In fact, some still believe the myths. So, is that autism?
It wasn't.
Because some autistic people are other genders.
Most are older than child-age.
Some are extraverts.
Some are People of Colour.Some have learned to 'act normal' to avoid punishment and ostracism, thus are masking their autistic characteristics.
Nearly all have learned to talk using spoken language, either at a normal point in development, or later on. A delay, not a deficit. Although autistic communication is meant to be different.
Nearly all have developed good practical theory of mind; it was a delay, not a deficit.
Nearly all learned skills. Some are absolutely brilliant at planning.
So, just about everything we thought we knew about 'autism' turned out to be a misunderstanding.
All are likely to have terrible outcomes in modern society, due to the early myths and misunderstandings. And due to what we now know about the prejudice of non-autistic people, who are likely to form an instant dislike to autistic people based on instinctive misreading of our body language. Bullying, ostracism, assault, refusal to provide adapted environments, refusal to provide education, refusal to provide accessible healthcare, normalisation therapies until people break from them.
Suicide rates breathtakingly higher than the standard population.
I would suggest the very last thing we need is for a researcher, no matter how notable, to pop up and say diagnoses are now trivialised. It's like saying, "We need to stop diagnosing people as Deaf. In the old days, we'd only diagnose them as Deaf if they showed wild behaviour and no empathy, but now, gosh, they'll diagnose anyone as Deaf! It's trivialised Real Deafness." Bizarre stuff.
The amount of effort families have to put into obtaining a diagnosis.
The exhaustion, the anxiety, the dreadful wasted years without support, because the system doesn't yet recognise most presentations of autism sufficiently well. Or doesn't expect some groups to be autistic. People given incorrect diagnoses, incorrect therapies, incorrect treatments. The damage from that. People left to rot, quite frankly.
Dr Mottron suggests that, in his view, real autism was a lack of any interest in other people.
He is concerned that people are being diagnosed who actually have friends.
Well, for one thing, the 'we're not interested in other people' mantra always was a myth.
Secondly, in the last couple of decades, technology has allowed us to find one another, and develop the friendships with other autistic people that we were lacking. If we recall, many autistic people were barred from socialising with their peers, in case they made each other more autistic (I kid you not. Much like refusing to let Black children play with other Black children, in case they get more Black...).
Try sending a child who finds labels scratchy to a diagnostic professional and see if you can obtain an autism diagnosis. Try it. I guarantee that you won't get far.
I've no idea what was in the mind of the researcher. Perhaps it was a bad day when they finalised the paper. But my goodness me, it's nothing like reality.
Thank you for reading.
https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2747847
