Suramin is a drug that's been around a while. Amongst its possible side effects, arthritis, nerve damage, loss of vision, vomiting, hepatitis, bleeding, collapse, jaundice and anorexia.
A research team had the idea that it might be a suitable drug for autistic children. They gave a dose of it to five young boys (average age about 8). Yes, five.
They then asked the parents to report whether the boys were better behaved or spoke more, after having it...and they applied an ADOS autism test to the children more than once. Plus some medical tests. The ADOS test is not meant to show repeat measurement changes. That's not what it is for. The parents reckoned their child's behaviour had improved. Well, it wore off after a while, and the researchers noted some side effects also. The young people were not asked whether it improved their lives, as far as I can tell. They were irrelevant, other than as 'lab animals', it seems.
The researcher put up a media article, saying autism rates were increasing. They're not - we're just better at diagnosis. The researcher also claimed that autistic people are a chronic disease. We're not a chronic disease, we are a different brain design, which comes with a range of positives as well as challenges in today's busy, noisy world. In the article, the researcher also said that they were keen to produce a treatment that only targeted the alleged problem behaviours (like communicating differently from parental expectations), whilst leaving 'special abilities' intact. But, curiously, their study did not test for this preservation of 'special ability', at all.
So, they gave a potentially dangerous drug to five young boys. And measured success as being a change to non-autistic communication and movement.
Am I missing something here?
We know that autism is a neurodiversity. We communicate and move differently because that is how we are. It is not a fault. It is a difference.
We know that most autistic people are not male.
We know that autism is not rising in numbers. Diagnosis is improving.
We know that parents sometimes want to see improvement when there really is none.
We know that most autistic young people eventually do speak, and eventually do learn new skills that they were lacking at the start, just like everyone else. But sometimes on a different time trajectory.
We have no idea what the long term effects are of giving this drug to those young boys.
We have no data at all on the effects on females, or older autistic people.
Meantime, a lot of parents fed the idea that we are a 'chronic disease' will be trying to find a dodgy doc who will give their child a dose or two of this stuff. Well, they will, won't they.
Not impressed. Dear researchers, please try to get a grip on what autism is, and isn't, before trialling a potentially dangerous medication on children.
[The picture at the top showed a shocked older woman. It's not a picture of me. But it is a picture of how shocked I was].