Deficit, Difference, or Both? Autism and Neurodiversity

11 May

A pubmed abstract out this week Deficit, Difference, or Both? Autism and Neurodiversity brings the fourth entry in pubmed using the term “neurodiversity”. One other paper is in Portuguese, and another is from Sweden. That said, I am looking forward to reading this study. I say looking forward because when I checked the the full paper was not available yet. I know of the first author, though. Steven Kapp is an autistic researcher at UCLA. He is a member of the Autistic Self Advocacy Network (ASAN) and was on my list of people to speak with at IMFAR last year.

Here is the abstract.

The neurodiversity movement challenges the medical model’s interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.

The Simons Foundation lists this paper as one of the “papers of the week“.

You can read more about the lead author, Steven Kapp, in the UCLA paper. The Daily Bruin article is Autistic student overcomes symptoms to help treat others. The story tells a little of his childhood and how he is now a graduate student researcher. And his plans for the future:

Eleven years later, Kapp is back at UCLA as a doctoral student in psychological studies in education. His goal is to become a professor and research ways to improve the quality of life and adaptive skills of people with autism.

The paper is based on an online survey and those are prone to biases. However, the paper does appear to address some important issues on the differences *and* the overlap between the medical model and neurodiversity approaches to autism. Further it doesn’t fall into the false-dichotomy trap of many neurodiversity discussions of seeing autism as deficit *or* difference. And, as we can see from the Daily Bruin article, Mr. Kapp is interested in researching ways to improve the quality of life for autistics.

I have hope that this is an article which can help to educate researchers (and others) about neurodiversity without the straw-men and misconceptions that are used by opponents. But, beyond that, the paper starts the dialogue in the literature of how to incorporate neurodiversity ideas into research and practice. Depending on how presented, this could be a very valuable paper.

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15 Responses to “Deficit, Difference, or Both? Autism and Neurodiversity”

  1. Sullivan May 11, 2012 at 22:59 #

    For what it’s worth, the Portuguese/Brazilian article is pretty bad, in my opinion.

  2. usethebrainsgodgiveyou1 May 12, 2012 at 14:21 #

    That is exciting! It is an amazing word, and not only autistics, but other forms of difference can benefit. Twenty percent of the population is said to be dyslexic…another form of neurodiversity. In this world, we do need all kinds of minds. It amazes me the gifts that each form of neurodiversity bring to human history. Without it, it seems we wouldn’t advance.

    Even those with debilitating forms of neurodiversity can benefit. I do believe one day we will waste less time trying to “normalize” children with disabilities, and work harder to enrich their lives, as they are

  3. Matt Young May 12, 2012 at 20:29 #

    I’ve had the opportunity to read this paper. I found it quite well-presented, and a good starting point for future dialogue.

  4. MJ May 14, 2012 at 11:40 #

    Unfortunately, the survey data in the paper looks to be pretty biased. Just to give a couple of examples –

    1. The researchers “recruited participants from their own social networks and e-mail lists and asked their contacts to redistribute the survey invitation” (in addition to other sources). Internet surveys are a little iffy to begin with, but asking your friends and family to participate in your survey?

    2. The male-female ratio in the autism groups is completely reversed – 69.5% female in the ASD group and 88.2% in the “undiagnosed” ASD group. How many representative samples of the autism population are going to have a 4 to 1 female to male ratio?

    3. Both of the ASD groups had a mean level of education that included some college education. What portion of the autism population can and does go to college?

    4. A little over 25% of the total autism group were self-diagnosed. So not only are there the typical internet survey problems of knowing that a person actually had the condition, here you have a substantial group who doesn’t actually have a diagnosed condition but rather has decided on their own that they have the condition.

    I could go on but I think you can get the idea. Any one of the above items is enough to question the validity of the data, but when you combine them there is no way that the data is a representative sample of the autism population.

    • Sullivan May 14, 2012 at 18:51 #

      MJ,

      the authors acknowledge a lot more limitations to the study.

      3. Both of the ASD groups had a mean level of education that included some college education. What portion of the autism population can and does go to college?

      Good question. Perhaps if we hadn’t spent the last decade acting as though there wasn’t a big population of unidentified autistic adults we would know the answer to that by now.

      Have you read the paper? With apologies in advance, I ask because your point 4 doesn’t sound like the point made by someone who read and understood the paper. The authors do include ASD diagnosed and ASD undiagnosed groups, as you point out. However, they treat them as separate groups for most (all?) of the analyses.

  5. Christie Buchovecky May 14, 2012 at 14:56 #

    SO glad this paper is out there. This is a topic I struggle with every day as a researcher and family member. Though, Sullivan, I would argue it’s not only the Neurodiversity opponents and researchers that sometimes loose sight of the nuances, some of the more vocal proponents do as well… I’ve had people tell me I shouldn’t be studying genetics to understand the causes a number of times. I think there’s a fundamental misunderstanding in the general public (not just the autism community) about why we study genetics. My goal is to improve quality of life; genetics I what I’m best at and can contribute the most with – to understand how to change something it helps to know how it works first (and this doesn’t have to – and for me doesn’t – mean changing how people with autism think, it can also mean alleviating many of the comorbiddities that people with autism suffer from). Sorry for the “sales pitch”.

    On a side note: are you heading to IMFAR this year? I have to miss it to work on getting a paper out, so I’m hoping to find some good liveblogging.

    • Sullivan May 14, 2012 at 18:39 #

      Christie Buchovecky,

      I’m glad the paper is out there too. It gets the conversation started in a good forum and puts it in front of researchers.

      I wish I were going to IMFAR this year. I find it ironic that IMFAR is scheduled during the peak of IEP season. That and a few other major factors make it impossible for me to go this year. Next year I (and until at least 2014) I plan to go.

  6. MJ May 14, 2012 at 19:30 #

    Sullivan,

    As I am sure you know, acknowledging the limitations doesn’t make them go away. I read the study up until the methods and data were presented and then skimmed the rest of the results and conclusions because the data was so biased that the results are meaningless. Garbage in, garbage out.

    “Good question. Perhaps if we hadn’t spent the last decade acting as though there wasn’t a big population of unidentified autistic adults we would know the answer to that by now.”

    You might find this statewide survey done by state of Pennsylvania to be interesting. The survey involved over 2,900 children and over 600 adults with autism and covered a wide range of issues.

    This survey is the largest collection of data on adults with autism that I have seen to date and it suggests that only about 12% of the adults population with autism has any college education.

    The data for the adults part of the survey is in two parts. The first part includes the results for adults whose parents answered for them and makes up the largest part of the group (492) –

    http://www.paautism.org/asert/ASERT%20Needs%20Assessment%20Adult%20Results.pdf

    The second is adults who were able to answer for themselves –

    http://www.paautism.org/asert/ASERT%20Needs%20Assessment%20Individual%20Results.pdf

    • Sullivan May 14, 2012 at 20:34 #

      So you read up to the methods and dismissed the results without even reading them? GIGO applies to decision making processes as well.

      I guess I won’t bother to ask what you found in the results that you disagreed with.

  7. MJ May 14, 2012 at 20:57 #

    I thought I was clear on that point, but maybe I wasn’t. So let me try and simplify my point –

    The results are irrelevant because the data collected does not represent a meaningful sub section of the autism population. Given that, you can’t take any of the results from the paper and have any confidence that they would apply to the autism population as a whole or even a large subsection of the population.

    About the only thing you could say is that the data collected is representative of just the people surveyed.

    • Sullivan May 14, 2012 at 21:44 #

      You were very clear. Hence my response.

  8. Christie Buhcovecky May 14, 2012 at 21:25 #

    Eeek… supposedly IMFAR is in España next year (though I find this information on twitter, not the INSAR site) I really hope I can scrape the funds together to make that.

    • Sullivan May 14, 2012 at 21:53 #

      Christie Buhcovecky,

      check the INSAR page for the program book. Search for “Spain”. It’s on Page 34

      IMFAR 12th Annual Meeting
      May 2 – 4, 2013
      Kursaal Centre
      San Sebastian, Spain

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