Thread by @ekverstania

What #ABA professionals are telling us is, "We're not bad! Let us tell you how we help! We'll even listen to you a bit."

What we're saying is, "Forget what you know. Listen from scratch as though you know nothing."

#NothingAboutUsWithoutUs

https://twitter.com/leftyautistic/status/1532068403472502784?t=fxVxV1s-KKdHE6jYb_fxsw&s=19

A few of the enlightened ones have memorised how to placate us.

https://twitter.com/AutismInspired/status/1531056084470882306?t=Ruobf7M6b_L9Lpjdr-9xnA&s=19

I'd actually want to give them a questionnaire, though, to see how much relevant knowledge they really have, considering they're supposed to be PROFESSIONALS.

Not that I expect much, given that this is what they learn...

https://twitter.com/AnnMemmott/status/1333329187529220097?t=lUwm3RJUbr_1yOjSxgq1pg&s=19

In some places, it takes months or years to get an autism diagnosis for your child.

And then suddenly, after that long wait, they tell you the child has 'ASD' and that it's URRRGENT to get 'early intervention' ASAP, or your child will be 'lost'.

ted.com/talks/robin_ro…

There are many places where 'early intervention' for autistic children is synonymous with ABA.

https://twitter.com/DrNancyFreeman/status/1157412407117041666?t=PzidAGPnWG7lznNHZrP3jA&s=19

So let's follow this idea for a bit.

Early intervention.

⚠️ Gotta INTERVENE quickly against that D in the ASD: disorrrrder! Because otherwise it will ossify into something horrible where intervention is needed constantly and indefinitely! 😱

/s

Behaviour analysts are taught that Other Medical Things that may affect their 'client' (the kid they're supposed to work on) are not their jurisdiction, so...

...if the kid has a spectacular tonic clonic seizure, for example, they can't just continue with a session, they need to refer to a medical professional.

That's how it's supposed to work, in theory.

But here's the catch...

I'm going to list some of the health issues that occur more commonly among autistic people than in the general population.

In no particular order, and with some overlaps, off the top of my head...

Spinocerebellar ataxia

Apraxia

Oral motor apraxia

Calcium channel disorders

Other problems with calcium homeostasis

Connective tissue disorders

Choline deficiency

Tethered cord

Chiari Type II malformation

Other cerebrospinal issues

Various cerebellar/brainstem anomalies

Hypokalaemic sensory overstimulation

Mast cell disorders

Gastrointestinal problems

Vitamin D deficiency

Cerebral folate deficiency

Autoimmune disease

Assorted seizure types: gelastic, dacrystic, absence seizures, temporal lobe epilepsy...

POTS

Magnesium deficiency

Sodium deficiency

COMT not working properly or COMT gene gone AWOL altogether

Shall I continue, or do you get the point?

Here's the point: these things are not in the syllabus.

https://twitter.com/ekverstania/status/1532074549722087424?t=wQSX5D8HZU9U8reOAcsJMQ&s=19

But if you happen to spot the symptoms of one of these things you've never heard of and wouldn't know how to spot, then as an ABA professional, you must dutifully report this as a possible medical issue.

https://twitter.com/ekverstania/status/1532082509021863936?t=wQSX5D8HZU9U8reOAcsJMQ&s=19

So what happens in practice?

You could be in considerable distress from any number of those things (brainstem issue, magnesium deficiency, POTS, mast cell disorder, connective tissue disorder, ataxia, apraxia, absence seizures, ion channel disease, hypokalaemic sensory overstimulation, whatever), but...

...unlike non-autistic children who have one of these conditions as their primary diagnosis, you, being autistic, don't get the regular treatment for these conditions as your main treatment, because you're autistic, and your 'behaviour' is now the focus.

What are the diagnostic criteria for autism again? It's social communication deficits, repetitive movements and narrow or restricted interests, I think.

And that, allegedly, warrants behaviour therapy.

What happens to a non-autistic child who has diagnoses for three or four of these health issues?

https://twitter.com/ekverstania/status/1532088524480077826?t=wQSX5D8HZU9U8reOAcsJMQ&s=19

Would a doctor prescribe ABA after diagnosing a non-autistic child with POTS, MCAS, ataxia and hypokalaemic sensory overstimulation?

What would such a child's 'behaviour' be like anyway, on any untreated day?

If autism is supposed to be a disorrrrder, then what kind of disorder is it actually? You could use those three main diagnostic checkboxes, but they'd be pretty superficial 'symptoms', wouldn't they?

Now some people argue that autism is some kind of complex agglomeration of inflammation and GI problems and whatnot that should be treated by early BIOMEDICAL intervention.

But weirdly, instead of leading to better support in the light of health and disability issues, this often ALSO puts the focus onto behavioural outcomes instead of human rights and quality of life.

I mean, I have a specific doctor-prescribed diet, and I take a lot of supplements, but I am not measuring the results in terms of 'behaviours'.

I'm managing pain, mobility, and energy, for example.

But an autistic child with an undiagnosed vitamin B12 deficiency, undiagnosed EDS/HSD and undiagnosed mitochondrial disorder, whose parents believe in biomedical treatment for AUTISM, are usually not going to look at pain, mobility and energy as areas for optimisation.

The autism, oh, the autism becomes the primary focus of worry, because if you don't reverse the autism early, if you don't recover them from autism early, if you don't treat and restore, then the autism behaviours are gonna come back and bite forevaaaah!

s/

Or so the legend goes.

And then you get the people who think you should Do It All, legal and illegal, biomedical, ABA, hyperbaric oxygen, stem cell therapy, chelation, chlorine dioxide, colloidal silver, craniosacral therapy, waging a war against this hard to define thing called autism.

That book was written by a woman who runs a CARD-affiliated ABA company, by the way. She tried to murder someone, left him slumped on the floor and walked away. She tried everything to destroy his autism, and failed.

When we follow a #HumanRights approach to disability as in the #CRPD, eliminating our differences is no longer the goal.

Optimising health is important, but OPTIMISING is the keyword here. You work with what you have so that you can can live your best life, not so that you can stop being unusual.

Where does ABA belong in all of this?

Well, actually... nowhere.

ncbi.nlm.nih.gov/pmc/articles/P…