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."
"The therapist re-presented expelled drinks by scooping up the expelled liquid with the spoon and placing it into B's mouth"
"The therapist did not provide any... consequences for gagging, coughing, or vomiting"

For the child, or for those of us reading this?
A 15 month old toddler. Repeating this.
15 months old. Held down and force fed, no matter what she tries to do to get away from the overwhelm.
No discussion of ethics.
No discussion of harms.
No follow up for distress.
This, my friends, is their 'good example' of how we can ensure no harm is done to a child.

I'm going for a nice walk. I may be back.
"B.. had been admitted to a pediatric feeding disorders program for treatment of food and liquid refusal. B's medical history included... gastroesophageal reflux disease..."

Not one word on how that could play into fear of eating.
Not one word re sensory needs either.
And which specialist unit woke up one day and thought, "Hey, why don't we just bring in some people to force her?"


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More from @AnnMemmott

22 Nov
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.

Yes, that's right. One. Me.

Remind me - is this 2021?
Read 8 tweets
22 Nov
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.
Read 4 tweets
21 Nov
Autistic children:
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?/
Read 21 tweets
18 Nov
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.
Read 5 tweets
18 Nov
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/
Read 9 tweets
16 Nov
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.
Read 10 tweets

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