“Oxytocin didn’t help kids with autism.”

Yes, I know it says kids with autism and most autistic people prefer to say autistic kids, but it is a quote. I know it’s wrong.

This will be old news when this blog is published, one week old in fact. Last Wednesday, 13th October 2021, as reported in Stat, statnews.com. There are things in the report of the findings that I found disturbing.

A sad looking girl with long brown hair wearing a green top and long red hair sits on a rock. The lack of background accentuates her solitude.
An autistic child’s drawing of loneliness
Picture via Wikimedia Commons

They are trying to change us

The report’s conclusion states:

This placebo-controlled trial of intranasal oxytocin therapy in children and adolescents with autism spectrum disorder showed no significant between-group differences in the least-squares mean change from baseline on measures of social or cognitive functioning over a period of 24 weeks.

https://www.nejm.org/doi/full/10.1056/NEJMoa2103583

The rest of this blog will be based on quotes from scientists involved in the study as quoted in Stat.

‘“This is really a major setback,” said Linmarie Sikich, a Duke University researcher who led the multisite U.S. study published in the New England Journal of Medicine. “We were really hoping to find a benefit and just couldn’t see it anywhere.”’ As experiments on mice had shown that oxytocin led to an increase in sociability we can make one conclusion: Autistic children are not mice. Sikich seems to think that autistic children behaving the same in a social setting as non autistics is a good thing. Did the researchers ask autistic people if they wanted to be more sociable?

I have autism and I love being sociable. The problem is that social occasions are very tiring and I have to limit my sociability in order to socialise. I choose my sociability in order not to become worn out. Taking a drug to make me want to do what I already want to do but which I find difficult but pleasurable does not sound like a good idea. Why should I have to act like a non-autistic person in order to be accepted anyway. I am an autistic man and I want to be accepted as an autistic man.

Children improve as they grow up

The experiment, it was double blind and had sample sized in three figures, 146 children between 3 and 17 were in the oxytocin group and 144 in the placebo group. 139 and 138 participants, respectively, completed the six week course. Small behaviour improvements occurred in both groups, but they had no meaningful impact says the report, which I can understand. Autistic children are children and children grow up.

Vikich said, “Separate analyses showed no difference in outcome in kids with mild or severe autism.” Another trigger here, ‘mild or severe autism.’ When the criteria for what autism is is about how we react when we are upset you get this sort of language mild and severe or high and low functioning then you know something is amiss. It is usually measured as to how effectively the psychologists think someone communicates, but autistic people do communicate, it may not be verbal. One person I know can communicate on social media in an intelligent way despite being non-verbal and despite it taking a significant amount of time to compose a single tweet. Labels like mild and severe, high and low functioning mean nothing. I would probably be thought of as high functioning, unless you assess me just before, during or after a meltdown, up to a week after a bad meltdown.

Behaviour therapy

“Behaviour therapy is the most effective treatment.” says the Stat article. Then they go out of their way to quote people coming up with excuses as to why the Duke University led study are inconclusive. such as this: “Without accompanying behaviour therapy or guidance, however, that effect could be negative,” The source of that quote is described by Stat as “Larry Young, an Emory University scientist who does animal research with oxytocin.” The whole point of this research as I see it is to see if an affect seen in animals, mice, can be duplicated in humans, and no correlation was found. Please don’t try to dispute those results by asking an animal psychologist. As far as I am aware there is no scientific basis for ABA therapy, but I am willing to stand down on that statement if anyone can show me double blind research with a reasonably large sample size that shows positive results then I will publish it here. What I cannot understand is that despite evidence that is coming in from large scale research such as this or this, or with evidence from autistic adults saying how ABA has negatively affected their lives that statements such as “Behaviour therapy is the most effective treatment.” can still be made. Defining people by how they behave when angry or stressed and trying to cure it by a therapy that stresses then is mad, like trying to cure alcoholism with gin. What we need is support, accommodations and respect. The report and the Stat article do neither. Talk to us about it rather than trying to do something for us

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