Biases in autism research

Before wondering whether this post has anything to do with recent discussions anywhere, please note that it was written in January and just wasn't posted until now.

I think science is a Good Thing and I think the results of scientific research can be very helpful to autistic people. That being said, much of current autism research suffers from a number of serious problems, none of which I've barely even seen being mentioned outside of the autistic community.

These problems are sufficiently severe, especially in combination, that I cannot bring myself to take large amounts of this research seriously. There is good work being done, but as I see it, it's being obscured by all the rubbish.

I will consider taking autism research in general seriously when...

• Researchers control for common causes of stress, anxiety, depression and detrimental obsessiveness before assuming that those conditions are inherent to, caused by or just mysteriously connected to autism, and without once considering the possibility that they're caused by the same things as in non-autistic people; i.e. discrimination, bullying, abuse, sensory issues, being surrounded by unpredictable people, etc.


• Researchers performing studies of autistic people in institutional settings (including places that function like but aren't called institutions) control for the results institutionalisation has on everyone, such as depression, anxiety, side-effects of medication, fear of staff, learnt helplessness, passivity, Stockholm syndrome and many more, before assuming that either those things or the further results of those are in any way due to autism.


• Researchers presume competence and purposefulness when they encounter difference. Starting with the assumption that everything not like yourself is inferior and broken and then forcing all your findings into that mold may be fine according to one's equally ableist peers, but won't impress the people who are trying to deal with the consequences of this practice.


• Researchers stop assuming that skills and deficiencies of autistic people generalise the same way as those of non-autistic people, and take this into account when designing, performing and evaluating studies. For an example of what happens when one doesn't do this, see this discussion of theory of mind. For an example of what happens when one does, see this study.


• Ethical review boards include autistic people, in a non-tokenistic manner, in the decision making process for whether to conduct a given study of autistic people in the first place. This process of inclusion will necessarily involve thinking about accessibility in ways far beyond ramps, and will have to include reimbursement for transport and loss of income for those who participate.


• Funding bodies make non-tokenistic attempts to solicit feedback and opinion from the autistic community at large. To use a (still somewhat) recent example, giving less than a month's time for feedback and conducting the inquiry during the winter holiday season, while certainly better than nothing, does not speak highly of their interest in actually receiving feedback from a wide variety of autistic people.


• Funding bodies realise the inherent dangers of having a privileged group conduct research on an unprivileged one, especially in a climate of media hysteria and relatively unhindered discrimination, and start funding autistic people to conduct our own research; both medical, psychological and sociological. For an example of just how much of a difference this can make, see the work by Michelle Dawson.

Until these issues have been addressed, I will continue to look very carefully at the methodology of any studies performed on autistic people before even considering taking their results seriously, regardless of whose opinions they support.

PS: No, I'm not back, just clearing out the post queue.

Why I'm not doing autism self-advocacy anymore

Last autumn I returned to autism self-advocacy, being fed up with the way I was treated post-diagnosis. I knew that a single person can't accomplish much on eir own, and no one else seemed interested in helping, but I wanted to have another go at changing people's attitudes nonetheless.

The thing is, I belong to a number of other minorities, not all of which are apparent. I'm well aware that there's a prohibition against multiple differences, but they're still there. That was fine until I started to accept myself for who and what I am. While fear and a lack of self-acceptance had long kept me from affiliating myself with some of the more stigmatised groups to which I belong, suddenly that was no longer the case, and as a result the prejudices, fear and outright hatred between their various activists and advocates finally got to me. In the end, after a lot of consideration, I left. It just seemed increasingly pointless to me to do it one step at a time.

Hence the silence.

So-called normal people, of course, continued to behave as before. This time, however, I didn't have anywhere to go, or at least I felt like I didn't. I began considering alternatives and I'm still in the process of doing that, but I've found precious few ways to advocate without having to force-fit myself into an already existing group's mould.

Sometimes I find tiny glimmers of hope, where all manner of odd people reach out to one another and join hands, if only for that brief moment recognising their shared goals. For the most part, however, I see much destructiveness and little actual progress, with many being more concerned with distancing themselves from "those people" than with seeking allies or even improving their own situation.

Perhaps one day I'll be able to participate again, voluntarily cutting myself into tiny pieces for the benefit of intolerant people, but right now I just can't bring myself to do so. For those of you who are still at it, I admire and applaud every bit of progress you make, but I also mourn every time one group tries to gain acceptance by speaking ill of another.

PS: If you think this entry is specifically about you, then you're very specifically wrong. No, really.

The history of Project Empowerment

I'm not sure if this is new to anyone, but I found an English translation of a document describing the history of Project Empowerment, a former project within the Swedish national autism society. It was originally initiated by Gunilla Gerland and was intended to increase the influence of adult autistic people within the organisation itself.

Some notes on the translation:

The term functional disorder is a mistranslation of the Swedish "funktionshinder," meaning disability.

Communicator should probably be lecturer. Unfortunately, from what I've seen and heard from the Dalarö based school, it mostly means self-narrating zoo exhibit.

LSS administrators are the people whose job it is to judge who gets access to the forms of aid granted by the LSS legislation. Unfortunately, they today frequently and illegally do so based on the local budget instead of the person's actual needs.

Podcast: SALT

For those who enjoy listening to speeches, I can wholeheartedly recommend the Seminars About Long Term Thinking series by The Long Now Foundation. It's a big part of my usual audio input when I'm travelling nowadays.

A surprising number of these talks touch directly on subjects relevant to activists and self-advocates of any kind, and most of the other ones have various amounts of geek appeal.

All of the talks given so far are available in their archive.

Quickie: I can has labels

I've now tagged (labelled in Blogger-speak) nearly every past entry on this blog. Hopefully that'll make it easier to find older posts on a particular topic.

Now, for some reason the tags won't appear on the actual posts. Not sure why, but I'm working on it.