Saturday, May 22, 2021

What Happened to Ethics, in Research About Autistic People?

Scrabble tiles spelling out the word "Research."
Photo © Thomas Haynie | Flickr / Creative Commons 
[image: Scrabble tiles spelling out the word "Research."]

Ann Memmott
annsautism.blogspot.com

I wondered whether a recent major international autism conference had discussed ethics as a topic this year. 

I found one discussion. Well, that's better than none, for a three day conference about our lives

Here’s part of that research team’s paper. It’s called “Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature” and was written in 2021 by Bottema-Beutel, and Crowley for a journal called Frontiers in Psychology.  

“Result:  Of the 180 studies that met inclusion criteria, we found that 84% had at least one author with …a conflict of interest, but that they were disclosed as conflicts of interest in only 2% of studies…Five of the eight journals we examined had policies requiring disclose of conflicts of interest related to employment; clear violations were evidence in four of these five journals.”

So, what’s a “conflict of interest”? This is where teams do research into subject A or B and say e.g. "No, really, I don't earn any money doing subject A or B, so of course I'm not biased when I say that A or B works." But actually they were employed by companies selling A or B, for example. 

It seems that nearly all autism research in that field of Applied Behavior Analysis is being done by people who earn a living out of the thing they are researching. Or are otherwise involved with it in ways that might lead them to overlook facts, or make results look better than they really were.

....and they generally don't bother telling anyone this when they write up the research.

People may think the research is done by completely independent people, but it’s not. 

This is serious stuff, and seems to me to be deeply unethical on this scale.

Example: Suppose you are employed by Company A to do a thing to autistic children.  It's in your contract that you must do it. You're paid to do it.

And then you're researching it.

If you say, "Oh no, it doesn't work!"—there goes your job.

So...would you say it didn't work?

It gets worse. Because now you've said that the thing works, when it doesn’t work.

The next set of researchers write their own paper, and they say, "Well, the first Research Team say this works fine. That must be right. So we'll design new stuff that also uses that technique."

Now there's two papers saying it works.

Along comes a third team who say 'Great, two previous teams say this worked. So we'll design it into a third thing."

Autistic people then say, "But it doesn't work," and get told we're talking nonsense. After all, three teams say it works…

Those who follow some of social media know how often I've tracked an alleged 'fact' about autism back to someone who simply invented the 'fact,' and then it got put into research paper after research paper. But, the ‘fact’ was never actually true. Sometimes it is just an idea that someone had, for example, without doing any proper research.

We are awash with nonsense. It escalates and escalates. Not just in the field of Applied Behavior Analysis, either. 

One person's vague rubbish or error, decades ago, gets boosted down generations of researchers, until some autistic children are being subjected to drugs, surgery, techniques to terrify them, and goodness only knows what else, because of the alleged 'facts.' Some of the research I see is truly shocking.

Allegedly autistic people are broken, have no social communication skills, will lead dreadful lives, etc etc. So much good research has shown this to be largely untrue. Autistic people generally have different social skills, not broken ones, for example. (Plenty more about that in some of the blogs I write.) Yet we see paper after paper saying our social skills are broken, and the research teams don’t even bother to mention all the new research showing it’s not true. The Ethics Board at the University don’t notice the errors and missing information, it seems. So Universities enable team after team of researchers to enforce normalisation of our social skills, even though we have research showing this is so often disastrous.   

Ethics matters. Ethics is supposed to respect differences, not erase them. Ethics is supposed to consider whether harms are being done during research. Yet few autism research teams check to see if any harm is being done, when writing results in their research papers. The team of Bottema-Beutel, Crowley, Sandbank and Woynaroski looked at “Adverse event reporting in intervention research for young autistic children” in 2020, and found that out of 150 examples, only 11 considered whether the children were harmed during any of the research. How can this be right, when this is such a vulnerable population, and when these are children? Do people think we are unfeeling lumps of wood?

We desperately need Universities to take ethics seriously, for autism. To consider autistic Human Rights, for example those in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which says that autistic children and young people should have a say in what is done to them, and should be listened to. The CRPD says that autistic children and young people have the right to an autistic identity. Such autistic identities, cultures and communication styles are so often erased by treatment programs such as Applied Behavior Analysis.  

We need Universities to put autistic specialists on their Ethics boards, so that when research is done on autistic people, there is lived experience and expertise at that table, challenging some of the incorrect ideas.

We need the opinions of autistic people to be taken seriously. So many people ask the parents and carers rather than the autistic young persons themselves. How can that be ethical? Even when autistic people are asked, so often their opinions are ignored or considered less important than any other ‘stakeholder.’  In fact, often we are the only people in the room with no say in how we are treated.

We need to stop the bizarre idea that autistic people are either too autistic to be able to give views that matter, or not autistic enough to have views that matter. How on earth did that piece of thinking ever happen? The views of all autistic people matter. Enable communication, and listen.

We need research that is open, transparent, person-centred, informed, collaborative, Human Rights based, and unbiased.

Every autistic person deserves ethical research that improves our lives, and honours our own aims for our futures.

Thank you for reading.