Saturday, 21 September 2019

Misunderstanding Autistic Neurodiversity Supporters

A drawing representing a group of diverse people.

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.  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 neurodiverse, in the same people as that group of people at the top is diverse in other ways.  It does not deny that some need support, and that some may need medical assistance for anything medical, e.g. epilepsy, food intolerances, mental health conditions.

I do not believe that describing autistic people as tragedies to be normalised through coercion is in any way helpful, for anyone.


I think people have us muddled up with autistic supremacists, a completely different 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.

 All deserve a life filled with caring and thriving.  Whether autistic or not.

I hope that's helpful.

Thank you.









Sunday, 15 September 2019

Autism. School. "No bullying here, nothing to see....move along..."

On the left, small wooden figurines, one with a cross expression. On the right, one small wooden figurine looking afraid.

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?

Saturday, 7 September 2019

Autism and IQ. Oh my, we had this one wrong, eh?



For decades, we were told that autistic people mostly have a low level of intelligence  - a low IQ.

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 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)



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.  I'll call this a LD.  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.  So, the number 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 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.

And it varied by gender, too.  37 out of 100 autistic girls had a LD.  Only 30 out of 100 boys.

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



"...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 a LD.

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 no speech and deeply unusual behaviour.  So we missed the females, People of Colour, 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.

Then, there's how we measure IQ for autistic people.  We'd often been using the wrong tests.  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.


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 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.  About 2%.  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.

We need to get a grip of what autism is, and is not.   It's not a learning disability.  And we need to move firmly into 2019.  A 2019 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 dribbling 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.

That scaremongering is costing a lot of lives, in missed vaccinations, 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.

Let's do better, eh?  We can.  And we will, together.

Thank you.

Saturday, 24 August 2019

So, is autism now overdiagnosed and vague? Well, no.


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

Monday, 19 August 2019

"But I work with Real Autistic People Who Can't Communicate At All!"


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.



Saturday, 20 July 2019

ABA. Continued Concerns.


Above, a photo showing a collection of glass marbles.  I used to collect them, as a child.  I'd study them for hours, watching the way the light reflected off them...through them.  Feeling their cold smoothness.  Admiring their colours and arranging them so that they created a beautiful pattern.

Other deep fascinations I had were around horses, maps, grasses.  Toy cars featured, and yes, I did indeed line them up, and spin the wheels on them.

I didn't talk.  I could make word sounds, copying word sounds I heard from others, but it wasn't how I communicated.  I communicated through pattern, colour, rhythm, body movement. I thought in pictures, 'videos', not words.

I'm now MD of a successful national Professional Practice that has run for 20 years, dealing with many of the top Blue Chip companies in the UK.  


So, how did I get from collecting marbles....to running a company?  What magic therapy, what intensive interaction, what amazing therapist did this?

None.

None at all.

Like hundreds of thousands of autistic people before me, and the same after me, we just learned.

Some learned the tough way, with violence if we did something 'wrong'.  I wouldn't recommend that. At all.

So...ABA.  Applied Behaviour Analysis.  I write about it from time to time, as more and more concerns arise from research.

Here are a sample few papers that may be of value to you, in your quest to think deeply about autism and what's needed.  Deeply in what we know about autism in 2019, not what we knew in 1940, to be clear.


https://www.tandfonline.com/doi/full/10.1080/23311908.2019.1641258
That is quite a piece of writing.  It's an opinion piece, not fresh research, but the links within it will lead to a whole world of concerns about ABA.

If we want to continue with doing our best for autistic children, what about this 

https://link.springer.com/article/10.1007%2Fs10803-017-3306-y

An interesting paper showing that in music therapy, it was in fact the quality of the relationship with the tutor that made a difference, not the therapy.

What about this one?
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251
This paper noted that repetitive movement seemed, if anything, to help autistic concentration, not get in the way of it.

And this one?
https://link.springer.com/article/10.1007%2Fs10803-019-04138-2
It shows that it didn't seem to matter which therapy autistic children had, or for how long/how many hours.  They still developed skills.  So, that hectic dash to get them into the best 'therapy', for the most possible hours, at the earliest age?  Might as well just sit back and read a newspaper, whilst a good Speech and Language person and a good Occupational Therapist sort out a best way for the fabulous young person to communicate, and the best way for them to do basic skills in a world that is too overwhelming for most of us.

What sort of overwhelming?  Chris explains Roundabout Theory here: http://annsautism.blogspot.com/2018/07/roundabout-hypothesis-guest-blog-by.html

...and you can watch this fabulous short clip. https://vimeo.com/52193530   2 mins.  Turn sound on, really really loud.  That sort of overwhelming. 

ABA is problematic, in my view.  Here's a video of some. Watch the first minute.  See how often the child is grabbed, moved, grabbed, moved, grabbed, moved.  How the toy is given, the snatched away. Endless endless repetitive meaningless tasks.  That's not OK, from my perspective.  I wouldn't recommend it.  https://www.youtube.com/watch?v=7pN6ydLE4EQ&t=504s

Autistic 'behaviour' doesn't have one neat cause, most of the time.

It may have many causes.  Some historic, from memories or emotions of past situations.  Some trauma-based, from poor treatment.  Some around sensory need that isn't easy to spot.  Some around communication, using autistic language, not non-autistic language.  Yes, that's a real thing.  The cause may be health related, or a spiritual or artistic need.  It may in fact relate to entirely different things. Personality, ADHD, Ehlers Danlos Syndromes Restless Leg Syndrome, for example.

It may be many of those things, all at once. Including the trauma, which of course would need a very specialist and thoughtful approach from a very very qualified person.

But here's the terrifying bit.




Who would have guessed that an 18 yr old without a qualification of any kind can turn up at your door as a 'tutor', having probably never even knowingly seen a young autistic person before....and you would pay them to do a therapy on your beloved child. 

Yes, some ABA specialists are qualified in child development as well, and I'm not talking about the ones who hold an additional appropriate qualification for applying therapies to children who are vulnerable and may have complex, overlapping and overshadowing diagnoses and situations.  I'm talking about the average ABA interventionist at a parent's door.

This isn't a 'gold standard', is it.

This is playing with children's brains, without any actual RCT evidence to prove a thing.  (RCT evidence is a proper big study, with children given a therapy...and other children not given the therapy...and really good long term studies of who did best, what harms, etc).

My concerns about ABA are shared by simply vast numbers.  Here's just one example of many many surveys.



That's from https://autisticnotweird.com/2018survey/

So, what helps?

Changing the attitude of the people around us.
The people around us learning about autism.
The people around us enabling us to see, hear and thrive, with simple accommodations.
The people around us respecting our different communication methods, and learning about them, and enabling us to learn about theirs.  Both enjoying that learning.  Both enjoying sharing.  Double empathy.
Allowing a child to grow in their own time, whilst of course keeping them safe.  Always take top advice on safety concerns.
Accessing good autistic experts to interpret your child's behaviour and help with sensory accommodations.
Accessing good speech and language experts, and occupational therapists who are trained in autism and sensory needs.
Trusting your instincts on which schools care about your child, if a choice is available to you.
Enjoying one another's company, as companions in life's journey.  Watching the young person grow, and thrive, and share, in that caring and supportive environment.
Learning from autistic people online. So many blog, and give of their time freely on social media.  But respect their boundaries, and their way of communicating.  Ours is direct, honest, straight to the point, not 'rude'.
Twitter, with its #AskingAutistics hashtags can be useful.  Or following threads like those I and others put on there to help parents with all sorts of autistic children. An example:


https://twitter.com/AnnMemmott/status/1122439058351894528

You might want to consider the SPELL training that's available from good providers.
You might want to get your school or organisation to use Synergy training from AT-Autism

You might just want to do your own thing. Many do.  I know their autistic children.  They're wonderful.

It's about love, you see.  It's about love, and thriving, and sharing.  And respecting difference.

Goodness me, we need families to have good support.  No-one is doubting that at all.  And we need young people's needs to be respected and good supports put in place for them, based on their needs, not on someone's probably faulty understanding of 'behaviours'.


But, without deep understanding and caring, there won't be thriving.  There can't be.  Nothing thrives in a forced repetitive intervention, pulled about and denied basics until there's total compliance.

Whatever you choose, I wish you and your fabulous young people a life of joy.




Friday, 5 July 2019

Autistic Cure. What Do We Mean?


There is much debate about cure, amongst autistic people, families and society.  Some of it useful.  Some of it generating a lot of anxiety or anger.

Some imagine there are only two possible groups.  Those who don't want any autistic person given support, or medical assistance for anything medical...and those who want all autistic people medically or behaviourally normalised, and future autistic people prevented.

Well, no.


It's a far, far more 'multi-flavoured' discussion than that.  Much like the picture of the different spices, shown at the top of this blog, there are different aspects of being autistic.  Different things to consider.  Different personalities.  Different circumstances.  Different levels of possible support.

As a professional in this field, and an autistic person with an autistic family, friends and colleagues of all kinds, I want each person to be free to make their own best choice.

What I don't want is lies, profiteering, or damage to autistic people.  Those are the three things I am deeply concerned about, and three things I see far too much of from some places.

Most of the difficulties autistic people have are from some non-autistic people.  That's a tough fact, but a fact it is, and we can't make it go away by ignoring it.

It's mostly some (not all) non-autistic people who control power in society, and budgets, and make decisions on whether autistic people get support.  Whether we have buildings with lighting and soundscapes that mean we can access them.  Whether employment has barriers so difficult that few autistic people can overcome them.  Whether prejudice is allowed to build to such a level that autistic people are wrongly feared, hated, attacked, defrauded, bullied, ostracised. Look at the anti-vaxx groups as an example.  They would rather their child died than have a child who is autistic.  That is how bad the prejudice is now. We also see too much nonsense  written about autistic people and published to earn a company some profits.

I'm very glad of allies.  Allies who enable us, and look out for us.  Allies who realise the myths about autism are exactly that; myths. That we are indeed generally honest, kind, fair, diligent people, gravely misunderstood for nearly 80 years.  Here's my blog on some of the research. https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html 

When we say we want autism cured, what do we mean?

I'm going to generalise.  Every autistic person is different. 
Autism is a different social communication system, which means we collaborate and socialise differently, often enjoying the company of other autistic people, but surrounded by non-autistic people who misinterpret us and get offended, thinking they're seeing rudeness.

Autism is a different sensory protocol, designed to spot danger around us and others, hence very sensitive hearing and sensitivity to anything different in the scene.  Arguably we are, and always were, the 'early warning system' for communities.  Focusing on the surroundings, not on the non-autistic social scene.  That may have kept society safer for thousands of years.
Autism is a different focus, where we practise, and practise, and practise, until we master something.  Build something.  Create something.  Something of value for all.  That may have helped society build structures and systems that were fair, properly tested, good for all.

Not all autistic people have such skills.  Every autistic person is a person of worth, a person who deserves to be fully themselves, and living their own best life.

Some autistic people (not all) find they are in too much sensory pain, and are desperate for that pain to be switched off or down.  I fully support their quest for that to happen, if adaptations aren't helping.

Some autistic people (not all) find they are in great difficulties with planning and carrying out tasks, because their internal 'organiser' is amazingly disorganised, and they very much hope that they could improve this.  I fully support that.

Some autistic people (not all) cannot use spoken language at all, or perhaps reliably, and very much wish to (although that's not autism itself, as quite a few autistic people can speak just fine.  So it's a 'comorbid' (hate that word...). They might want to use spoken language better, and if they do, I fully support their quest.  Although for me it is a pain in the, er, language department and I'd be happier just typing, personally.  I blogged on that too.

Some autistic people also have a very low IQ and wish theirs was higher.  A low IQ is not autism.  It's another 'comorbid'.  But if they wish to have a higher IQ, and there was a way to do that, I'd support it.

But...what does 'curing autism' mean?

Can we just 'cure' (say) sensory pain and planning difficulties, but leave the useful parts (as defined by that person?).  Perhaps. No idea.

What happens if we try?

What if the 'cure' goes wrong?  What if tinkering about with genetics and potions actually leads to disasters, to things becoming worse, not better?  We barely know how to give an autistic person a standard medical treatment without noting it has a vastly different effect on us, compared to others.  Tinkering about with genetics?  That's serious stuff.  Messing about with medication, in the hope it only 'removes' a problem and not something vital?  That's impossible to say.  It's why messing about with the genetics of people is so carefully controlled by international groups.  Almost no drugs are tested on autistic people.


I also worry greatly about a future where our plans for helping autistic people are built on lies.

Lies that 'all' autistic people are tragic burdens that cost £millions.  That one really is a breathtaking piece of nonsense.
Lies that 'all' autistic people suffer.
Lies that 'all' autistic people wreck the lives of others.
Lies that 'all' autistic people lack emotion, empathy, humanity.

I see those lies Every Single Day of my professional life, from some groups and from some specialists.  


Lies that we are behaviours that need controlling
Lies that without treatment X, we are incapable of learning anything, ever.

If we spent even a thousandth of the quest-for-cure monies on actually improving autistic lives, actually providing autistic-led, autistic-requested support, actually countering the lie-mongering...I wonder how much better life would be for families?  For individuals?  For society, able again to benefit from autistic people instead of using us as scapegoats?

There are countless £millions being spent on a quest for a cure, and the background papers aren't about improving our lives.  At all. I've read some of them and it's shocking stuff.  The background papers are about improving the profits in the bank for the shareholders, and we are the tool by which they're going to do that.

That, my friends, is what worries me.

And, it should worry you too.

Because a population that is portrayed as nothing but tragedy, nothing but burden, nothing but cost and misery...well that is a perfect target for profiteers.  


Don't you think enough non-autistic people have profited from us already?

I'd like to see a world where we honour, respect and enable autistic people.


Where we truly listen.


Where we are free to identify all who are autistic, and stop imagining that autism looks like a multiply-disabled non-speaking young white boy or a white male computer engineer in his 20s.


Where we affirm the importance of positivity and support, instead of imagining that such things 'fail to affirm the problems of others'.  (Nonsense.  It's perfectly possible to affirm good things, as well as support those who need support,and offer medical treatment to those who have medical conditions such as IBS, EDS, epilepsy)


Where we encourage specialisation, and put in place good housing,doable jobs and vocations.


Where we acknowledge the autistic people who are in employment, who are retired, who look after family, who bring up children, who serve charities, who support one another.  The weird stuff where we are either in full time work, or are 'tragic burdens' is another myth, isn't it.

Where we stop seeing full-time-work as the only measure of human worth.

Where we take time to walk in friendship, learning autistic culture and communication.  Observing caring, love, sharing.  Creativity, art, poetry, music, flow, rhythm.


Realising that autistic people aren't naturally rude at all.  It is a misunderstanding.

Celebrating with the Autistic Pride movement and all it is bringing to confidence and authenticity.

And where those who need support or treatment that actually does help with pain, fear, depression and anything else negative, can find that in safety, with their lives and wishes at the centre of that quest.

Like so many of my fellow professionals, I have serious concerns about the cure-industry that is happening.

I think autistic people are a vital part of society.  As vital as every other person.  Bringing different perspectives, different integrities, different skills.


I think if we forget that, there will be a catastrophic cost to us all, in a world where we need every kind of mind to help us all survive.