Autism research

lake-louise

 

I love learning about autism at the moment.  I can spend many hours relaxing reading blogs, books and research.  Occasionally though, I find my special interest can be a source of irritation rather than relaxation. So today I am blogging because I want a bit of a moan.

I try and get to as many conferences as possible and have seen some excellent speakers talking about autism.  At my most recent one, I heard a researcher speak about the work they are doing to engage the autism community and how feedback from autistic people had enabled them to make many positive changes to their research design.  There is obviously progress, if the involvement of the autism community is sought where it wasn’t before. I don’t think this engagement goes far enough though.

‘Researchers’ and ‘the community’

Frequently, the speaker referred to ‘researchers’ and ‘the community’ but it seemed to be assumed that they are two mutually exclusive groups. The talk seemed very much ‘us and them’ as though autistic people were there to be studied, but not to study. I commented on the fact that autistic people carrying out the research would be an improvement and was told ‘it is hard to find autistic people who are able’. Given how we are disadvantaged both at school and in higher education I am sure it is difficult, but let’s look at this statement in more detail:

Firstly, earlier in the talk there was mention of how the environment was made more autism friendly so that ‘the community’ could come to their offices to be engaged. Flourescent lights turned off, annoying buzzy microphones not used etc. But if researchers need to make changes to their workplace in order to make it accessible to ‘the community’ then that is quite telling. It suggests their everyday workplace is not an accessible environment and so many autistic people may be prevented from getting jobs as researchers. Making workplaces accessible is a work in progress, I know that.  But you would think a place that is researching autism would be ahead of the game.  If there were a real belief that autistic people are best placed to research autism, surely more would be done to enable this.

Secondly, if existing researchers say publicly that it’s hard to find autistic people who are able enough to become researchers, then that’s going to reduce the likelihood of a) an autistic person believing themselves capable of this achievement and b) disclosure of autism by any autistic person applying for a research post.  It sends out a pretty clear message to any one applying for a job – the employer believes non autistic people are more able than autistic people.

My view is that problems with how we identify autistic people (or often don’t) also contribute to difficulties finding researchers who are openly autistic. I believe there are some autistic people who don’t require any support. Some of us have learned to get by, perhaps at great cost to our mental health. I suspect, it is often the more intellectually able who have been able to do this.  Seeing as being a researcher is intellectually challenging, we are talking about the people who may be most suited to becoming researchers.  This group of intelligent autistic people are often precluded from a diagnosis as they have become so competent at copying the behaviour of non autistic people.  Many people have complete faith in the diagnostic criteria and believe you can’t be autistic unless a medical professional can see it.  So ironically, the years of research by primarily non autistic people have resulted in diagnostic criteria which may not be appropriate for recognising the autistic people who may make the best researchers.  Without that recognition these autistic people may never pay much attention to autism as a field.  There is no doubt my interest in the field has been sparked as a direct result of realising my family and I are autistic.

Representative samples

There is another point I would like to make about the representativeness not only of the autistic people you are using in your sample, but also the autistic people you are engaging whilst designing the study.  This particular researcher was confident that in one particular area, the sample was representative of autistic people.  I would like to say here (as there was no opportunity at the talk) that if you are researching autism, it is in my humble opinion, never possible to say that you have a representative sample. We don’t know who all the autistic people are and I believe the diagnostic criteria are biased.  It is based mostly on research done on males for a start, and some say that females present differently.  So one can say one’s sample is representative of people with an autism diagnosis but I do not believe people with an autism diagnosis are reprentative of the autistic population.

Anyway, I am glad to get that off my chest.  It would be so good to be able to have a proper debate about these issues with those who are doing the research. In the absence of that opportunity, blogging will have to suffice.  Please comment if you have any opinions on the matter.

 

 

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Author: typicallyindividual

Autistic mum to autistic children. Autistic wife to autistic husband. Hoping to link up with others who share my interest in autism. If you recognise me, make yourself known but don't blow my cover please! It is anonymous so I can write more freely.

14 thoughts on “Autism research”

  1. I want to thank you for writing this. My lab studies the cellular mechanisms of differences between males and females in autism and intellectual disability. We do a lot of thinking about how boys and girls will behave and compensate differently, but what you describe in your post really hit me when a woman came to speak to me after one of my talks. She was so gracious to openly discuss her struggles and how she experienced her job and daily interactions. I learnt so much from her and it opened my eyes to some of the misconceptions I had developed by only looking at a small group of individuals. Because the diagnosis process was designed for males, we actually have no clear idea what females with autism really are like. So you are absolutely right in your frustration and it is important to voice it.
    Also, there are probably a lot of scientists who are on the spectrum. The autistic brain can be well suited for science. 🙂

    Liked by 3 people

  2. Thanks for this piece – it’s so important and very well put! I’m a PhD student doing research on ‘camouflaging’ (aka coping, masking, compensation) in autism, with a focus on how people who camouflage, especially women, may not receive a diagnosis. As a research community, I think we definitely need to become more accessible and inclusive, but I also think that the practicalities of doing research under time and money pressures mean it’s difficult to do this. I’d love to hear some of your thoughts on ways to encourage more overlap between the research community/autism community.

    Liked by 3 people

    1. i have had many office jobs (though no research experience). There are many suggestions I can make from that perspective.
      The sensory environment of open plan offices was not good for me, especially when they do fire alarm tests. Hot desking was the norm as to save money the policy was for every 10 employees there were only 8 desks – not good for some autistic people, those who don’t like constant change or fair on people who had to come in late e.g. after school run. Sometimes you’d have to spend first part of your morning hunting for a desk. It wouldn’t be difficult to allow some people to have a permanent desk. Plus side of this policy is working from home was encouraged – v autism friendly in my opinion.
      So many offices are multi site nowadays, so there were lots of conference calls. I found this very difficult, I am not sure what would be a good alternative though.
      I have lots of thoughts on how higher education could be more autism friendly. Maybe I should write a post about this.
      What we need in the long run is for autistic people to not be ashamed of being autistic. At the moment there’s a stigma. If autistic people don’t think they will face discrimination they will be more likely to disclose and more able to ask for what they need.

      Liked by 1 person

  3. I get what you mean…. by separating Researchers and Community we, autistics are placed in the position of the ” subject of study”.
    Which “culture” do autistic researchers adopt? That of the established NT design and methodology or do they take steps to create a new appropriate system?

    Would a different system be acknowledged in broader community etc?

    Liked by 2 people

    1. What do you mean by a different system? Do you have particular research methodologies in mind that you think are inappropriate? I like qualitative data e.g. interviewing people.
      For me, the problem is often that we are judged through an NT filter. So this affects things like the ‘outcomes’. I have seen successful outcomes being described as (for example) wide range of interests. As an autistic person who is very happy with my limited range of interests and who enjoys the expertise it brings, I am sure I would have a different take on what’s a good outcome.
      I think many autistic people would choose different topics to study too. I would be more concerned with how to improve the lives of autistic people by enabling them to be happier. Not by making them normal or worse preventing their birth. And I would find out what makes them happier by asking them, not by assuming they want to be like NTs.

      Liked by 1 person

      1. I think mixed methodologies are beneficial. Qualitative yes and with a view to possibly formulating designs and questionnaires/surveys that address autistic personalities and concerns. Hopefully developing new quantitive “autism culturally relevant /specific research tools.

        Participatory action research which includes autistic people in every step… from formulating the ” question to be addressed”, design and processes also interpretation.

        Something to aim for.

        Autistics are best placed to decide on an approach … the NT approach/es doesn’t apply to us… to acquiring an understanding of us but how NTs see us in relation to their NT cultural material/criteria.

        Not sure if I’m explaining it effectively.

        Liked by 2 people

      2. You’re explaining it fine and it does sound like something to aim for.

        I really think we need autistic people doing the research rather than just being involved though. The reason I say that is there is a conflict of interest if a researcher just recruits people to help them. No one is going to want a critical autistic like me telling them they’re doing their research wrong. It must be tempting to hire people who will be less critical. And of course if the NT researcher is ‘the boss’ (or at least perceived to be) you’ve got to be pretty confident to tell them they’re wrong.

        Liked by 2 people

  4. Hi,

    I Recently wrote an article about this subject, using peer reviewed, clinical/journal articles and data. I illuminate some aspects about modern medicine, autism, and iatrogenic realities. I think this can give you (anyone) insight into biochemical/physiological processes. Peep my blog below. Thanks 🙂

    Paradigmshift101.wordpress.com

    -Badmash

    Liked by 1 person

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