Autism: The Danger of Diagnosis - Part 2

John Elder Robison Community Member
  • In my last post I talked about the value of self knowledge in the context of neuro-psychological testing.

    I said, "There is no downside to testing." Several readers took me to task for that, pointing out that there can be a downside . . . learning that you are officially "different" can be a crushing blow to the psyche.

    I have thought about that point quite a bit. Frankly, although I acknowledge what people are saying, it does not make a lot of sense to me. Why would increased self knowledge be such a blow? ADD, Asperger's or autism are neurological differences. They are (generally) stable conditions, not diseases that progress. If you learn you are on the spectrum, it's not a death sentence. You're not going to become senile or lose your wits.

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    So why is the knowledge of why you are different so hard to take?

    I think we grow up with certain notions of what conditions like "autistic" mean. We think, I'm glad that doesn't apply to me. Then, all of a sudden, we are told it does apply. Our self image takes a hit.

    I can understand that, but I still believe that knowledge is power. We can't change our lives for the better unless we understand what needs changing. Therefore, it is necessary to get beyond the shock of a diagnosis and move into understanding what it means, in terms of how we act, live and get along.

    To me, critical comments like Samwick's (on my main blog) illustrate the danger of labels, which is rather a different issue that what I originally meant to write about.

    When I wrote my original post, I thought how much diagnosis meant to me by helping me understand exactly how my mind differed from other minds around me. For example, the simple insight that I miss nonverbal cues was life-changing. I seized upon the specific behavioral issues and set about constructing a better life. It worked. Words cannot express how much better my life is, thanks to the self-knowledge I've gained since learning about my Asperger's.

    For some other people, it does not work that way because they become sidetracked by preconceived notions about "having a diagnosis." Instead of looking at their own specific issues, they look at broad statistics associated with the diagnosis. They see phrases like, 32% can't live independently, or 66% never get married and have a family. They become trapped in generalities rather than focusing on specific issues to make their own lives better. They interpret those general statistics as a prediction for their own future, when it's nothing of the sort.

    More specifically, they see their future as inexorably tied to every unfavorable broad statistics associated with their diagnosis. IN that sense, some DO see an autism diagnosis as a sentence to some kind of living death. They get swallowed up by diagnosis, forgetting the fact that they've lived their lives before and life goes on after.
    That is the danger of a label. Some people read what's associated with a label, and make it self-fulfilling. They let go and become the label. That negative outcome can be reinforced by teachers and adults who say or think, He has a diagnosis of autism. We can't expect too much of him. That is most assuredly not the way I have lived my life.

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    For knowledge to have power in this context, it must be you-specific knowledge. You should not care what 66% of people do in this context. You should care that you have specific and identified strengths and weaknesses. For example, testing might show that you can read subtle emotion in voices, but you can't pick signals up from faces alone. That's an example of knowledge you can act on to make your life better. The fact is, you ARE that way. It's not new, and you're not getting worse. You are already living your life in context. Understanding can only help.

    Next, I'd like to address another important point . . . the risk of a wrong diagnosis. People say, What if I get an Asperger diagnosis when I really have ADD? Can't that be harmful?

    That actually goes back to my comments on the dangers of labels. To me, the label does not matter. What matters are the specific insights into your own behaviors and identification of your personal strengths and weaknesses. There is no hazard to learning those things. I agree that diagnostic errors can be harmful, but that too is another subject.

    Don't focus on the label. Focus on the behavioral insights. Ask yourself, does the result make sense? If it does, you are the way to improvement. If it doesn't make sense, question the tester. Perhaps the results don't mean what he thought. In the end, it is the specific behavioral insights that allow you to make a better life, not a broad brush label.

    People are not labels. Our personalities are made of countless eccentricities and aberrations, and it's those I seek to understand. The power is in the details. There is no power in a broad brush label.

    Finally, there is another danger of diagnosis. That is with your medical record. What if you receive an autism diagnosis and it's entered into your "official" record because you had the testing done by a professional who's paid by a health insurer? It's possible that you could be rated unfavorably for insurance, or even denied insurance later in life.

    What to do about that? The only answer I know is to pay for testing on your own, and make your own decision where the results are released. I would have some concerns about having any diagnostic information in my medical record because the evidence indicates insurers sometimes try and use those records against us for their own advantage.

    So the issue of "downsides to the diagnosis" is not as clear-cut as I originally portrayed. I apologize to those who felt my original post was misleading or incomplete.


    For more of John's insights check out his blog Look Me in The Eye


Published On: April 28, 2011