Autism research: who’s it really for?

Note: I’m not going to provide links to any specific studies I may mention. Mainly because I had written this blog post earlier today and internet issues resulted in it being deleted, and I’m much too tired to dig out the studies again. I just want to write it out again as quickly as possible, while I still remember it! If you really want to read the original studies, I know you all know how to use Google!

Opponents of autistic self-advocates often claim that we are anti-research. As usual, the truth is much more nuanced than that.  I have not come across any autistics who are demanding a blanket ban on all autism research. There are, however, specific types of research that seem problematic to us, and that we believe are a waste of money. Broadly, these are:

A: Pointing out the obvious. 

A recent (2016?) study showed that non-autistic people lack an ‘autistic Theory of Mind’. So, just as we can’t really ‘walk in their shoes’, they can’t walk in ours either. Autistic people have have been saying this for years. There are many other examples of studies like this. It gets frustrating that it takes studies carried out by non-autistic ‘experts’ to prove what autistic people have been saying, like their voices count above our own. 

B: We are not mice! (Or dogs, or monkeys or other animal studies)

Every few weeks a new ‘breakthrough’ study seems to be released claiming to have something to do with autism. Unfortunately, a lot of these have been conducted on mice. They take mice, alter them in some way, and then try to claim the ‘autism-like’ behaviours studied have any relevance to autistic people. Getting a mouse to hide in the corner of its cage, obsessively grooming, for example, is not autism. Yes, animal models can be useful in finding treatments for actual medical conditions. But they do not do much for studying different neurotypes. We cannot ask the mouse what it’s thinking or feeling. And selecting a few ‘odd’ behaviours as a proxy for autism is just plain bad research. 

C: You want to do WHAT to us?!!!

This category of research includes all those studies that try to turn us non-autistic. Leaving aside all the ‘quack’ therapies that don’t bother doing any research, there are still a lot that fall into this category. A few examples are Transdermal Magnetic Stimulation, Electroconvulsive Therapy, oxytocin sprays and all sorts of other pills and potions. Aside from the risks of side effects, aside from the ethical issues surrounding consent if children are involved, there are often concerns that rather than helping autistic people, these therapies are more concerned with making them act non-autistic. And I’m not even going to go into genetic research that aims to prevent us even being born. 

So, what kinds of research do I actually approve of? 

Any research aimed at treating the real life disabilities faced by autistic people trying to cope in a non-autistic world. Research into assistive technology that might help us communicate better. Research into co-occurring conditions such as epilepsy, migraines, Ehlers-Danlos Syndrome, chronic pain, anxiety and depression. Research that actually helps us live fully as autistic individuals, not try to turn us into non-autistics or eliminate us. 

But, more than that, when I look at the money that goes into problematic research, paid for both by Governments and charities, I can’t help but think of all the autistic people living in poverty. I would much rather that money be spent on services for them such as respite, home help, support workers. Ideally I’d like a grant made available to someone upon diagnosis, to use as they will, whether that be for supports, for rent, or for buying food. And a grant available for those who cannot access diagnosis in the first place. Every day I come across autistics resorting to personal fundraisers, such as Go Fund Me, just to survive. And so, I’d like actually helping autistic people be more of a priority than the majority of research, which at present seem to mainly benefit ‘autism researchers’. 
[image of a 3D clay-model type depiction of a person, entirely in white and unclothed, holding a giant magnifying glass with a black handle. The magnifying glass is aimed at a large red 3D question mark.]

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2 thoughts on “Autism research: who’s it really for?

  1. Absolutely agree. Forums and Twitter are full of autistic people comparing various physical and emotional situations and saying “does this also happen to you?” Researchers/Google do not seem to have the answers. Of course it is a positive thing for the autistic community to compare notes and research among ourselves, but the sheer number of queries of this type I have come across in just a few weeks is truly staggering. Come on researchers there is no shortage of questions here that genuinely need answering! These are things that impact us every day.

    As for the social and financial support – great idea. Something tells me that if researchers published enough papers on the types of questions autistics really want answered then we would have the evidence base to make an even stronger case for better social care and support.

    Like

    1. I do know some researchers are shifting towards including autistic people in designing the studies. That really needs to be encouraged. And there are studies that show that we have shorter life expectancies and are at greater risk of homelessness. There needs to be studies on why this is the case, and how these issues can be resolved. So much more important than ‘what causes autism’ type research. I mean, they are literally about life and death for us!

      Liked by 1 person

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