There was a programme yesterday about autism, in the UK.
Being clear there were some positive things in it.
Being clear that this isn't a go at the parents.
But the messages within it...this was a sample.
We then wonder how autistic people end up stereotyped.
I was v impressed with Mum, incidentally.
Taking this from the top, "complicated" or "complex" normally means, "The specialist doesn't understand".
The myth that we don't recognise emotion. Anyone who hasn't been living in a cupboard for the last decade will know the Double Empathy Theory/
digitalcollections.dordt.edu/cgi/viewconten… Well. In this paper, the ABA industry believes it's serving God and being a blessing to the world, by stopping us naughty autistic people having tantrums so we can get out of doing tasks.
More tea, anyone?
And in it, a marketing pitch:
"The field offers excellent employment opportunities and has the potential for growth outside the area of developmental disabilities. ...75% of Americans identify as Christians...behavior analysis will permeate our culture [if] Christians embrace it"
So, if they tell Christians that ABA is God's will, it's more likely that their business will spread.
I would like to honour all the autistic people who survive the care system somehow.
All those who survive extreme 'therapy'.
All those who are brought to their knees, reading hellish descriptions of their loved people.
And all who did not survive this onslaught.
All those surviving on poor pay.
All those routinely denied Human Rights.
All those dismissed as "their usual contemptuous self" by those in power over them, in care settings.
All those having PBS "enforced" on them (direct quote).
Your lives matter.
Your culture matters.
Your way of communicating matters.
Your right to be authentically you matters.
You deserve people around you who care about who you are. You are not as a project for them, an experiment.
Your voice matters.
As we had a supremacist on a recent thread, a reminder that I don't tolerate " ..'High functioning autistic people have nothing in common with low functioning ones" on my threads.
The idea that there are two convenient groups called 'high' and 'low' functioning always was an error.
As I've said before, no-one wakes up in the morning thinking, "Gosh, I hope someone calls me 'low functioning' today. It's an insulting ableist label/
/designed to suggest that one of our loved community has pretty much nothing to offer, in any aspect of life.
Not friendship? Not shared journeying? Not love? Not creativity? Not humour?
Or are we saying that society doesn't value any of that? /
Today I would like to talk about, "If you've met one person with autism, you've met one person with autism".
It's said quite a lot.
And, mostly, people mean it kindly.
But I'm not sure they've thought this through/
Mostly they think they mean, "So...everyone is an individual, and it's vital to ask each person what works for them."
This is of course absolutely true.
But, let's try this version:/
"If you've met one person with femaleness, you've met one person with femaleness".
How excited are you to hear that, if you're female?
Does it make you pleased that you are being recognised as an individual?
What are we trying to say?/
Today I would also like to discuss harms to autistic researchers from reading some research done on autistic young people.
Do brace yourselves for this one.
We are in a book, "Research Methods in Applied Behavior Analysis"
Pic of front cover/
Turning to page 135, we learn how ABA enthusiasts are great people who allegedly minimise harm to an autistic young person.
They give this a *good* example. Here it is.
Content warning - forced feeding & restraint
The toddler is 15 months old.
"If she did not accept the drink within 5 seconds, the therapist followed B's lips with the spoon & deposited the liquid any time her mouth was open. Another therapist blocked inappropriate behavior from behind the high chair."
It's quite easy to tell when a new-to-me team leader has been given The Talk about Those Autistic People And How To Handle Them.
The 'You are just a naughty person and my job is to explain things very slowly to you' speech is done to me.
It's entertaining, I guess/
One recent Government-level meeting:
I had pointed out that another contributor had given wrong information.
They were nonautistic, and representing a $billion-dollar organisation.
I got the slow speech about how we do not talk until we are spoken to/
...complete with the sing-song voice used for speaking to small children.
Now...guess how many autistic people were in that meeting, about autistic needs? Total meeting = 15 people.
I see that SBC has been attempting to comment on whether early diagnosis leads to better outcome, measured on the ADOS test for autistic people. For 'better', it means 'normalised'.
I think we need to be careful about using words like 'better'. This is why:
For a child to be diagnosed as autistic, the parents have to think their child is different, & take the child to a dx clinic.
Autistic parents are perhaps less likely to notice their child is different to nonautistic children, & less likely to want them to be normalised after dx/
The paper they're talking about suggests that being normalised is a 'better outcome'.
As we can see from the informal poll above, no, it's generally not a better outcome for us.
It's a better outcome for nonautistic people around us.
Haircuts and hair generally. Top tips that may help, from this parent of nearly 30 years of experience of own offspring and advisory work with many others.
Distress around hair stuff is a very common autistic situation and nothing to do with 'bad behaviour'/
Let's take the scenario of hair needing cutting.
a) Does it? Quite serious about this. Is this actually not a necessity?
b) OK, if it does...let's think through the hazards ahead.
First of all, planning with our fabulous young person/
Pictures, chats, watching others having their hair done in videos. These can help many of us autistic individuals to understand what's going to happen, and why.
Sensory situation - the surroundings. Where is this going to take place?/
Wanted...ABA behaviourists to help in study on whether doing awful things to autistic people is acceptable?
Er...if people are reporting adverse effects, the big clue is that no, it's not acceptable.
I hope that helps.
Participants, I believe, are asked to report on whether it's OK to electrocute children, use noxious substances on them as a punishment, or withhold food from them, to force them to comply.
Yes, these appear to be real questions, in a piece of research about ABA.
The participants are asked if it would be OK to do this if the children were already hurting themselves.
Well now. Let me think.
No, it's not OK.
In fact, arguably it's criminal behaviour, isn't it.
Before an unexpected situation earlier, I was honoured to speak to the attendees at the @PSCRuth#PSCneurodiversity conference, about thriving. I said a variety of controversial things. Things like 'build on strengths', and 'stop using negative words as descriptions for us'/
@PSCRuth I mentioned Human Rights, and the challenges so many parents face in trying to get even the basics of these for the fabulous young people.
I talked about education, and the challenges involved in finding the right place with a positive team/
@PSCRuth I talked about the importance of including neurodivergent people. About belonging, rather than accessing.
These shouldn't be controversial things.
These should be the absolute minimum things in people's lives, if we want them to thrive/
Autism research funding debate happening in the House of Commons, London, right now (16/11/21 17.44pm) BBC Parliament channel on the TV.
My old 'boss', @RobertBuckland currently talking about the problems of autistic young people not getting diagnosed with other things e.g. ADHD, which mean their school life is difficult and they may be more at risk.
@RobertBuckland Greg Clark MP @GregClarkMP talking about the importance of good opportunities for employment. Absolutely.
Now discussion about exclusion from school for a five year old, accused of being 'manipulative'. Five years old! Shame on whichever adult came up with that.
Whilst we're talking about nonautistic autism organisations in the UK, someone explain to me why this is a good symbol for 'I am autistic'.
Snip shows 5 male heads, overlaid with question marks, puzzle pieces, coloured blobs, cogs and a lightbulb.
This appears to be a lightbulb usually meaning high intelligence. Some 'we haven't a clue' question marks. Three non working cogs, possibly meaning our brains don't work. Some insulting puzzle pieces, and some random blobs indicating...well, I've not a clue. It's a PR disaster
If we're trying to indicate the wide variation of autistic people of all genders, we could attempt to show some diversity in the heads.
If we're trying to show allyship, we could use the symbols that autistic people choose, rather than ones from a hate-group (puzzle pieces).
Dear nonautistic autism charities.
I am not a free broadcasting service for you.
It's not OK to send me requests to publicise your work.
Especially when you have a track history of behaving very poorly towards me in the past.
Simply extraordinary. The notion that autistic people are here as a way for charities to market their products and publications, for free.
Thank you to charities that approach respectfully, and pay a proper rate for agreed work.
Now, if you are an autism charity, I have news for you.
It is YOUR job to support US.
It is not OUR job to support YOU.
I appreciate this is quite hard to understand.
This new study is very important, in my view.
About autistic people, and the difficulties we may have in producing speech, and eating a good range of foods in a useful way, because of muscle/sensory differences in our mouths. ncbi.nlm.nih.gov/pmc/articles/P…
Whilst it's still a 'medical model' document, yearning for a cure for us (sigh), it's right that many autistic children and young people are referred to as 'picky eaters', as if it is a behavioural choice, a refusal to do sensible things.
This is why it is really, really important to get excellent advice from an Occupational Therapist and a Speech & Language Therapist who are trained on autism, so they can assess how the mouth, tongue etc are working...assess sensory needs, check practical steps to assist/
What on earth is this?
Is the thinking that no autistic people have autistic children?
That autistic children are more violent compared to others?(Nope)
That ABA, shown to make zero difference to 'challenging behaviour' will somehow work because she's swearing at us?
Because someone will say, "What nonsense, Ann! Of course ABA works!", let's remind ourselves of the research by various organisations including the Psychiatrist profession's researchers and the United States Military (not exactly clueless amateurs). annsautism.blogspot.com/2019/01/autism…
The Military found there was no real improvement in behaviour, except for normal progress you'd expect from any child who simply grew up a bit.
The Cochrane Review found only weak evidence.
The big review found nothing, if you remove studies likely to show bias.
It's a mess.
Who was saying ABA problems were all in the past?
New paper. onlinelibrary.wiley.com/doi/10.1002/ja…
Enforcing compliance on autistic young people.
Want to know what the 'problem behaviour' was?
"..resisting (e.g., physically resisting prompts to complete the instruction, pulling or turning body away from instruction, putting head on desk after an instruction was delivered"
"...elopement (i.e., standing and moving 15 cm or more away from the desk without permission..)"/
The young people Must Comply. Instantly. Without complaint. Without question. Without hesitation.
Whatever the adult tells them to do, no matter how utterly pointless, and no matter how bewildering, and no matter what horrific sensory environment, Do It/
Andrew Whitehouse has responded, re the work done to seemingly prevent young children getting an autism diagnosis. He claims we are misrepresenting their team's efforts.
I want to talk about the response, because I remain deeply concerned/
OK, what does Andrew say? "..Autism cannot be 'prevented'....the babies remain neurodivergent but they are not showing the same degree of developmental barriers that lead them to meet the 'deficit focused' DSM-5 diagnostic criteria of autism".
So, avoiding being diagnosed/
What does Andrew say his team used? The IBasis-VIPP method. Here it is. research.bmh.manchester.ac.uk/ibasis/protoco…
Let's look at its contents. Snip is from link.
Here they are, training the autistic child to make eye contact/
Surprised to see the British Psychological Society's new guide, 'Working With Autism' (2021), referencing Autism Speaks.
Doesn't include any named autistic people on its list of contributors?
Out of date statistics re work, also.
I am mystified. bps.org.uk/sites/www.bps.…
"Practitioner psychologists working with adults with autism should work to ..explain how the core characteristics of autism can impact on the relationship (e.g. rigidity; inability to demonstrate affection; inability to empathise with others’ difficulties..."
This is what happens when people do not work with us as equal partners. They end up writing embarrassing materials that are in part very out of date, and which contribute to stigma, trauma and to incorrect narratives.