Voices From the Spectrum #25: Dinah Murray on Autism Research

Dinah Murray is a British researcher, speaker, and campaigner for people with varied learning disabilities, including autism. Her work has been published in the journals Autism, Good Autism Practice, as well as a number of books and online publications. She is an international public speaker on autism. Her research interests include medication and quality of life impact, IT for nonverbal individuals, and the ethics of autism research.

This week Dinah shared with us some of her most meaningful research findings as well as how to promote a positive autistic identity.

What led to your interest in autism advocacy?

I had an idea about autism and wanted to meet an autistic person to see if I might be right. Then I realized that I could be a useful person in his life (and to some extent I still am – going to see him tomorrow in fact.

When did you realize you might be on the spectrum?

When my young autistic friend (above) was amazed to hear me describe myself as normal.

What are some examples of meaningful autism research?

  • Mottron, Dawson et al’s analyses of autistic strengths;
  • Morton Gernsbacher’s analysis of reciprocity;
  • Rita Jordan and Stuart Powell’s analysis of the overlap in practitioner behaviour from officially opposite practices- Option and ABA;
  • Hogsboro’s study comparing a few approaches to education of autistic kids in Denmark, and displaying the individual variation in impact for each child – thus showing the active harm that was being done by ABA in some cases as well as demonstrating how the eclectic inclusive schools were generally doing best with most kids.

What are some examples of research efforts that have (or could) become troublesome?

  • Theory of Mind obsession;
  • Oxytocin fascination, though it promotes ‘gang’ thinking as well as love and hugs;
  • All research that interprets its autism data within a medical paradigm.

What are some of the most promising information technology advancements you’ve seen that can help people on the spectrum who don’t use speech and their families/caregivers?

Well, obviously I’m going to say any communication aid, all cameras and video cameras, and the miracle of all of these being combined. The Internet, Facebook, and Twitter are also useful. Specifically I anticipate that the ASK autistic designed app for crisis use will be a great aid to independence (see Autistic space kit on the app store – available for Android too in a couple of months)

What would you say to parents who want to avoid labeling their child as autistic (seeking a diagnosis) in order to avoid a stigma?

If you think your child will need special support, then the odds are they will attract stigma through their behavior anyway; the other side of it is to see a label of autism as not as negative in reality as it is in the diagnostic criteria.

How can parents help their children develop a positive autistic identity?

In addition to avoiding the perception of labeling autism as negative, all parents should read Jim Sinclair’s Don’t Mourn For Us and follow its advice; encourage the child to pursue their own interests and show them how to go deeper into it and connect with others who share those interests.

How can parents and families encourage autism acceptance in their own communities and in the larger society?

By always questioning negative descriptions and rejecting talk of it as a disease. By explaining the ideas of overload, processing time, and recovery time. By being a pioneer of the ASK in their communities, by telling people links and blogs and information about autistic strengths.

 

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