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
The painting is by George Frederic Watts, and is called Hope. It shows a lone blindfolded figure sitting down and holding a lyre harp, their head close to its remaining string.
For me, it says something about the desperation for communication, joy and freedom which is felt by some autistic people trapped in some care home settings that don't understand autism.
It's a regular thing that a care home worker or behavioural enthusiast will pop up to say to people like me, "You don't know anything about Real Autism. We do. We work with Real Autistic People in care homes and they can't communicate at all. They spend their day screaming and self-injuring. That's Real Autism."
Oh goodness, no, it's not Real Autism.
That's distress behaviour. Not autism.
We need to be clear about our duty as human beings to do our best for one another. To enable safety, trust, affirmation, and most of all, communication.
I spend a fair bit of time in care home settings, co-assessing care alongside other professionals. I've worked alongside and with hundred upon hundred of autistic people of all kinds. Those able to use spoken words, and those not able to, and all those in between who, like me, are sometimes able to. Those who have been given additional diagnoses of learning difficulties. People of all kinds. Much appreciated. For me, an absolute joy to spend time with, and to listen to. I'm autistic. I have an autistic son. I'm post-grad qualified on the topic. I train NHS teams, amongst others.
Communication isn't always about words, especially when you spend the first ten years of life not having a clue what spoken words meant. That was me.
In our family, we communicate mostly in autistic language, not non-autistic language. It's a different system. The work recently by Crompton et.al. showed how effectively autistic people can communicate and collaborate with one another, and how easy it was for miscommunication when partnered with non-autistic people. We really do have our own language and culture, when enabled.
So, what of the alleged 'real' autistic person, screaming in distress and self-harming?
We need to be able to decode this, and resolve it, because this is distress behaviour, not autism. And it is communication, loud and clear.
Suppose they are hitting their head?:
Could they have migraines?
Is it tooth pain?
Jaw pain?
Eye pain from undiagnosed glaucoma or similar?
Sinus pain?
Supposing they have collapsed on the floor, or are using their body in 'wild distressed ways'?
Could they have undiagnosed hypermobility syndromes such as Ehlers Danlos, which is a common (but little thought-about) co-occurring thing? That can cause pain, balance difficulties, difficulty standing. POTS is another possibility, where there's an error in how the body gets enough of the right blood round itself when someone stands.
What of Restless Leg Syndrome, (which can affect any limb) and can lead to a desperation to move or kick out to get rid of the pain and discomfort in the limb?
Could they have injuries of any other kind?
Are they ill
Do they have CFS or similar?
If they seem frustrated, could they be bored to tears, having been given the wrong IQ rating because teams were using the wrong IQ test for autistic people for decades. Many have a normal or higher IQ, but are given simplistic tasks, teams believing they can do no better.
If they are experiencing meltdowns regularly, have they had a checkup from a brain team? The recent research showing many meltdowns are linked to epileptiform activity in the brain is interesting, and of course vital to understand. Not 'autism', but potentially a form of epilepsy? More research is happening.
What of communication? Have teams engaged a really good Speech and Language Therapist who specialises in autistic communication, to work with the person on ways they can communicate best? Whether movement, sign, technology, speech or otherwise?
What of the sensory environment? Starting with their own body and the clothes and shoes on it. Are they too tight, too loose, with seams or labels that scratch and dig in, causing immeasurable pain and discomfort?
What of the rooms they encounter? Are they lit with lighting that is so bright or flickery to their eyesight that they cannot see in the space, and are totally disorientated?
What of the soundscape? Get a decibel meter (easy to get apps for a smartphone, for this) and see what areas have sounds above about 25 decibels. That can be deafening. You'll find it is just about everywhere in most care homes. The quieter ones often have people thriving.
Sleep. Or rather the lack of it. Common for autistic people because of all sorts of factors, including uncomfortable scratchy nightwear, sheets that feel like sandpaper, beds that creak like a ship at sea when they move. Noises from the hallways and adjoining rooms. Endless flickering light in bathrooms nearby etc. Sleep disorders to do with melatonin or similar. Anyone who is regularly without sleep will be irritable.
Fear. So many autistic people are living with undiagnosed trauma conditions because of past maltreatment, especially those who communicate differently and cannot easily say what happened to them. Are they in fact terrified of someone they work with right now? We don't need to go far to read of the horror stories of a few care homes and the cultures people endured in there of mockery, scorn, violence and worse.
Coercion. Are they subjected to inhumane coercion methods from some fairly fanatical behaviourists? (ABA, or those ABA fans who claim it's PBS but it's actually pure ABA). I say plenty about professional concerns on this subject in other blogs of mine. I see people left in a terrible mental state by some behaviourists. Being clear that some are kind people who adapt techniques to be collaborative and joyful, and I don't mean them.
There are simply so many possible reasons for distress behaviour.
We do no favours to people in care home settings by claiming their distress is 'autism'. It leaves people at grave risk of poor outcomes from undiagnosed health situations, for a start.
We need to be proactive. We need to get in autistic specialists, who work alongside other professionals such as Occupational Therapists and Speech & Language Therapists, and help decode what's happening. Translators, allies, able to see and sense the sensory difficulties that teams would otherwise be guessing at.
We need to stop the idea that distress is 'real autism'. We need to stop the idea that autistic people don't and can't communicate. Above, just ideas. Not a full list. But I hope it's given you a starting point.
Every autistic person is a person of worth, a person who deserves to be listened to, and respected for who they are.
Working together, we can bring about good outcomes.
Glad indeed of the work I do with teams across the country who want to effect positive change that is fit for autistic people, and fit for the 21st Century.
Thank you for reading.
