Autism: parents know more than academics

I first started to research autism when my sister was diagnosed.

Having been diagnosed ADHD a year or so previously, I couldn’t help but notice the similarities (according to diagnostic manuals) with certain forms of autistic spectrum disorder.

So I started to dig a little deeper.

And that’s when I came across this book – the ADHD and Autism connection by Diane Kennedy.

Diane, the mother of a couple of neurodiverse children was disappointed by psychologists’ eagerness to hand out diagnoses for ADHD but not autism. Apparently, in the US, parents were often pushing for ADHD because of the stigma attached to autism. Plus, pharmaceutical companies can make a lot more money from ADHD, so there is that.

As Diane furthered her research she, like me, began to join the dots between the two disorders. However, to the frustration of some people, she isn’t a doctor.

During my research I found a comment which boiled my blood.

“I’m very disappointed that i committed so much time to this when i could have spent time on peer reviewed journals on the topic. If you want a mother’s account of her experiences with ADHD/autism issues you may benefit from this, but if you are interested in something academically useful, steer clear. Quite surprised at the acclaim this book has received. Consider trying elsewhere first.”

This comment perfectly solidifies the problem with what we don’t know about autism. As Jac den Houting said – we know nothing about autism because scientists and researchers, for so long, didn’t think to (actually) ask autistic people what they thought, felt and experienced.

And when the voice of autism has been dominated by academics citing peer reviewed, but not autism reviewed, papers, you’re left with, well, something of very little tangible value.

Dr. Mark Adams told me that you can learn more from the parents of autistic children than from any book, lecture or peer-reviewed journal during a couple of hours of conversation.

I’m all for science. And doing things thoroughly. But we’ve got to, you know, do the right things thoroughly.

Which begs the question: why are we approaching autism from the top down instead of from the bottom up.

It’s like how all the best doctors started out as nurses.

From the bottom up.

It’s great to know that change is happening. But these problems must be cut off at the source.

As Desmond Tutu said – “we need to stop just pulling people out of the river. We need to go upstream and find out why they’re falling in”.