Sharing from Sue Fletcher-Watson : Autistic voices, and the problem of the “vocal minority” | DART

Recently I have received feedback from a number of sources suggesting that I need to be careful when listening to autistic people, and integrating their perspectives into my research agenda. The implication is often that I would be better off if I didn’t talk to autistic people quite as much as I do.

This has been pretty challenging for me. I obviously don’t always (often? ever?) get it right, but working alongside autistic people, trying to ensure that the research I do aligns with their priorities, is absolutely a matter of principle for me. You can see examples of that in the Shaping Autism Research seminar series, in which I was proud to take part, and my personal mentoring relationship with Kabie Brook.

At the same time, I deeply respect, and am personally fond of, many of the people who are telling me I need to watch my step in relation to asking autistic people what they think.  These people are all doing high quality research and are super brainy. More than that, I have no doubt that they care greatly about making a difference in the lives of people on the autism spectrum, and their families. So why the reluctance to ask  #actuallyautistic folks what they think?

Read the rest of this great piece at: Autistic voices, and the problem of the “vocal minority” | DART

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4 thoughts on “Sharing from Sue Fletcher-Watson : Autistic voices, and the problem of the “vocal minority” | DART

  1. Maybe the Autism Moms™ (aka moms with autism of their children) feel threatened, and so do all the other specialists without autism?
    Asking only advice from a group that is an outsider is like asking women for advice on how to check if you have prostate cancer, or American people about the bosy language cues in Saudi Arabia, or neurotypical shrinks from India how to accurately assess if any issues Estonian clients are presented with are part of their culture or “mh” issues. If you are not part of that group, and only use book knowledge about said group, well… your view will always be that of an outsider. Why the f would that even been seen as an expert?

    I’m always amazed how all the psychology books written in USA are so neurotypical and with such sighted and hearing authors. It’s like they try to pathologize any deviation of the social norms of eg the use of eye contact, facial expressions, tone of voice etc. And then on the same time while they briefly might mention that body language or expressions are NOT universal and international, and to maybe consider people might have lived elsewhere etc etc so they feel like they are ah so inclusive and whatnot. On the same time, disability and other issues are pushed aside as not relevant (and so far little thought has been heard in those books that people could have a) invisible disabilities b) a combination of them and c) gasp, have issues because everyone disses their combined issues).

    We need better psychology books, written by diverse authors. Dyslexic, autistic, generally neuroAtypical. Train he professionals too. This is what the world feels like when you are autistic: … lots of autistics out of closet are fortunately already dping that. Describing it, and in a way that is normal. Like, look, nothing to see, being autistic is no weirder than being a person without autism™ (like the person first language there?). Even superior in many ways.

    I’d never claim to have a good understanding of neurotypical mind; especially that corresponding to the gender i was assigned when i was born. I have learned from books, have learned from many interaction mistakes, and don’t usually do much with females as I don’t understand their communication styles easily. If i wrote a book explaining their typical behaviors and communication styles, there would be a lot of pathologizing, but only because I see their weird behaviors as something that are inefficient and as something to be fixed. Maybe if DSM-VI will have finally neurotypical spectrum disorder, they could add views by aspies, as neurotypicals’ opinions about themselves should not be sought out… same logic 😉

    Liked by 3 people

  2. The reason for suggesting researchers to avoid input from NDs, is a well justified concern that learning the TRUTH may force some to revise an otherwise lucrative business, built nevertheless on division and confusion.
    Unfortunately, children can’t tell Autism’s real story, and oftentimes the story of their parents (and I say this with respect, without any intension to offend anyone) is the story of what they would want their children to be(come).
    Also, the absolute chaos caused by the arbitrary shift from the DSM-4-TR Asperger / classic Autism differentiation to the all inclusive/confusing DSM-5, leaves parents -especially those with children diagnosed in the early years of their lives when the major, language subsequent and learning disabilities/difficulties haven’t fully clarified yet-, even more confused…
    Because as difficult to accept as it may sound, in my opinion, Asperger’s and classic Autism should be considered, researched and supported from an identical stem, but as completely different branches. Otherwise, parents of children with classic Autism specific learning disabilities might end up with disappointed expectations while facing neurobiological barriers impossible to cross, while parents of children with Asperger’s would never learn that narrowed capabilities are usually enhanced capabilities beyond the average, worth exploring and developing.

    Liked by 2 people

  3. There seems to be a fear of ” hearing” about autism from actually autistic adults. Could it be that non-autistic people parents, researchers, treating professionals may be challenged to examine their behaviour and attitude to autism and autistics?

    It would not be easy for autistic researchers to challenge the status quo as they are dependant upon the establishment for their livelihood and career.

    This leaves people like myself, without a completed post graduate degree not only without the opportunity to use my knowledge and experience in a profession but also it leaves me discredited of having legitimacy as one who has experienced autism all my life but is also capable of reflecting upon my life and communicating my appraisals.

    A non-autistic parent is considered as being more knowledgeable than people like myself. .. and what ever we say can be easily dismissed on the grounds that it is ” only your/our opinion” read only one autistic person’s opinion.

    Now this is getting close to why you , Sue, have been cautioned. Imagine if there were studies looking into the actual autistic adult existential experience as reported by autistic adults, willing and able to communicate their experience and understandings as to how their disposition affects their ability to thrive within a society designed for and by the dominant non-autistic demographic.

    I posit that it would become apparent that similarities would be found within the adult autistic community. Whilst we may truly be a heterogeneous bunch we are none the less human beings capable of consciously experiencing our life experiences, reflecting upon and communicating them through our appropriate, if individual, means… spoken written, signed, gestural, graphical/visual etc.

    Researchers have taken a safe path for themselves by concentrating on studies into infancy, childhood and Intellectual Disability… these autistic people have no power..they are not able to challenge or give explanations.

    We are the Hot Potatoes!

    Liked by 1 person

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