The argument over a long-standing autism intervention

I can't help but wonder if there's something about the tendency to black-and-white thinking characteristic of autism that makes it hard for people on one end of the autism spectrum to appreciate that the experiences of people on the opposite end might be very different from their own.

My sister was a special education teacher and had a theory about autism that she described with a metaphor. Imagine riding a tricycle. Neurotypical people are along the fairly limited spectrum of "healthy children riding tricycles." Some are a little better or a little worse, but most can do it, and the skill variation isn't that high.

People on one end of the autism spectrum are more like adults trying to ride a tricycle. They're too big, too powerful. It doesn't work now, but if they try really hard or come up with creative workarounds, they can sort of do it.

People on the other end of the autism spectrum are trying to ride a tricycle with a jet engine attached. There's way too much power. The tricycle can't handle it. There's no way to ride the tricycle with a jet engine on it that will even vaguely resemble a child riding a tricycle.

Maybe if you're an adult riding a tricycle, you can argue you don't need help. You'll come up with something. You might have to ride with your knees over the handlebars, but you'll still get where you're going. It would just help if people would leave you alone and stop staring at you while you do it.

But if you're trying to navigate a jet bicycle, that's not really going to help. You might need really severe intervention to keep you from crashing and hurting yourself. Maybe that's picking the trike up off the ground or something so at least it's not crashing, even if the heat is still a lot to handle (it's a metaphor; it's not perfect).

Might it be nice someday if the world had the capacity to handle jet-powered tricycles? Maybe, but that's not going to happen immediately enough to help the people already on them when the whole world has been built around children on trikes, whereas the world might be able to change fast enough to accommodate adults on trikes, since that would mostly mean not looking askance at the people riding in different ways.

It might be a spectrum, but many things considered opposites are on a spectrum. Light and darkness are on a spectrum too, but what works in the light may not be any use in the darkness, and vice versa.

Lumping autism and Asperger's into a single spectrum disorder was a mistake imho. I'll be using the old terminology here, for clarity.

The two share some symptoms, but largely in the "all psychiatric disorders are comorbid" way. Asperger's is best modeled as a personality disorder[0][1] whereas autism proper is a neurodevelopmental disorder, associated with significant developmental disability and delay in mastering basic human skills, some of which, sometimes, never manifest.

Most of the flak in "treatment of autism" comes from adults with Aspergers, and usually milder cases of it. This is what happens when you lump such people in with non-verbal twelve-year-olds who wear helmets, especially if misguided physicians and parents attempt to "treat" them using protocols designed for the latter sort of person.

People with Asperger's can benefit, sometimes, from guidance and therapy. They, and those close to them, often suffer from their condition, to some degree. But like any personality disorder, there's a spectrum from mild to severe, and on the mild side of the line, at the limit, it's not a personality disorder, it's a personality.

None of which has anything to do with autism proper, which is, even in the mildest forms, a severe and lifelong disability. Many who suffer from it will require lifelong personal care, they pose a physical threat to themselves and others, and/or will never be able to master basic life skills (along the lines of wiping your bum or tying shoelaces) which preclude independent living.

[0]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8717043/

[1]: having a personality disorder isn't a shameful thing, it isn't an insult, and if this characterization upset you, I apologize for that.

Roughly speaking, there are two categories of autistic children. The therapy is focussed on autistic people who need care 24/7. The therapy doesn't seem to fit autistic children who are verbal but have issues with social skills.

The latter group had some bad experiences with this kind of one-size-fits-all therapy. But the argument is made that the therapy isn't totally inhumane/worthless as it does help 'severe' autism cases.

This reminds be a bit about the deaf community arguing whether having cochlear implants as a "cure" means they are abandoning their deaf identity.

"They say that its rewards for compliance are dehumanizing;"

Have these people never experienced life? You get rewards as a child, in school, and at work for doing the preferred actions. You get punishment in these areas and other areas of life if you do the wrong behaviors. That's just life. Perhaps those people can't see through the facade in "normal" life and this unhidden view of it is somehow harsh to their surface view of the world.

I think generally we have turned a corner on Autism where it's moved from being viewed as a disease one treats to just how someone is. I think of it in terms of alignment, we used to try to "align" someone with autism with the way society works but now rather than trying to align the person, we instead align society to the way the person is.

I believe everyone deserves the level of respect where someone else will speak with them in a calm and rational way.

When therapists, cops, HR, drug addicts, or lawyers do not do refuse to speak rationally, I write then off as not being worth speaking with.

Because street drugs/recreational drugs can cause mood imbalances, I have found it productive to ask for drug testing of such people.

Can you imagine an ABA therapist that is not a drug addict, but genuinely lacks respect for aspies to the point they refuse to sit down and talk to them? Imagine disliking a group so much that you taunt them with constant overly-emotional drama instead of just speaking with them. Such a therapist would be worse than a drug addict.

I have a friend with 2 autistic children, who is an activist for autism. One is high functioning and the other is very low functioning. He has told me several times that the only thing that works with his low-functioning child is ABA therapy but it's extremely expensive. In Canada, the autism medical intervention is minimal in many parts of the country and a growing crisis. The idea that some activists would try to get rid of it is astonishing.

>In recent years, private equity has taken a voracious interest in A.B.A. services, partly because they are perceived as inexpensive. Private-equity firms have consolidated many small clinics into larger chains, where providers are often saddled with unrealistic billing quotas and cut-and-paste treatment plans... Private-equity-owned A.B.A. chains have been accused of fraudulent billing and wage theft; message boards for A.B.A. providers overflow with horror stories about low pay, churn, and burnout.

Private equity takes a questionable medical service and makes it objectively worse. It would merely be depressing and tiresome except we are now talking about putting neurodivergent children and their caregivers into an increasingly hostile, exploitative, and extractive system so Blackrock and its ilk can put some more black on its balance sheet. Disgusting.

Seems like a problem of applying a "one-size-fits-all" approach to all patients with autism spectrum disorder (ASD). It's clearly inappropriate to try and change behaviors that are not harmful, but clearly appropriate to change behaviors that are. Banning ABA would throw out the baby with the bathwater.

> Hammond is now the mother of two autistic sons.

An autistic autistic-advocate has two sons and they are both autistic? What are the odds of that? Is there some genetic hand down I’ve never heard of?

There is a lot of money from Silicon Valley rushing into ABA treatment and having seen the results I can't help but think we do better.

Current systems of ABA rely on billing the therapy to insurance and thus most of these ABA "mills" just throw inexperienced college kids who haven't graduated yet at the problem on a session by session basis paid at minimum wage.

These college-aged therapists have no interaction with each other since they go directly to the session at the client's house, leave and go home to take notes. Sometimes they switch patients quite regularly so there is never a chance for a comprehensive plan to emerge.

The insurance only pays for treating the patient and thus no space is available for training the parents. If we want to do better, we have to start with the parents and develop therapies that last the whole week not just 2 hours a week.

Theres a lot of potential for improving the system, but the current ABA system that SV is taking over focuses on extremely short sighted "box checking" and does nothing to develop a long term approach for the family.

ABA is evil and should be illegal. In my jurisdiction, it's illegal but not enforced so they continue to operate.

Autism is a very interesting subject for me. I got to 40,000 words in a book and then abruptly stopped when I figured out the cause(not genetic). ADHD, autism, somatics, tics, etc are all the same thing.

>A.B.A. is the only autism intervention that is approved by insurers and Medicaid in all fifty states.

The sooner this stops the better for the USA. This is really the big problem though, the DSM(american) is written not for patients, but for insurance companies in the USA.

We have gotten to a point where the USA would rather harm autistic people then deal with the consequences of the combined spectrum and dealing with the cause.