The Autism Spectrum

A cognitive neuroscientist explores autism, Asperger's syndrome, and related disorders.

Stigma

Autism Diagnosis, Benefit or Stigma?

I apologize once again for my inconsistant posts.  I get so busy with research it is hard to find the time to devote to the blog, but it is always my hope to be more consistant in the future.  I also realized that the post I drafted in January somehow did not get posted.  I just uploaded it. 

For today's post I thought I would ask a question to those out there with ASD.  Has the increased awareness of disorders on the autism spectrum helped or harmed the stigma?

I can see both sides and often am confronted with people with differing opinions on this matter.  On one side I think it has helped the stigma.  People are more aware of it.  They understand that it is a neurological condition, not just that the person is "socially awkward" or "rude" but on the other hand if you had been living your life without a label and now you have a "diagnosis" people may treat you differently.  Oftentimes I am asked by participants that noone be told that they are participating in this study (which is always adhered to because of HIPAA and confidentiality guidelines) anyway, but that they are very concerned about others (family members or coworkers or friends) find out that they have Asperger's Disorder or Autism. 

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Also participants often either are only interested in research that will lead to some therapeutic benefit to themselves, not interested in basic research and then there are those who are only interested in the basic research to gain insight into their condition, but do not want to be "changed". 

I understand that in a harsh world anything that makes you different puts you at risk for social stigmatization, but on the other hand, it is the diagnosis that can help you to be more functional and receive the resources that will in the end help you to lead a more full and happy life.

In a related area, I have faced a similar issue and because of my mother's proactive attitude, I was given the additional resources that I needed and I truly believe without the "diagnosis" I would not be in the place I am today.  Specifically, when I was in Elementary school, I received speach therapy.  If I had not received this therapy as a child I have no doubt that my difficulties would have led to much frustration in communicating over my lifespan.  A family member now has a similar problem that I beleive would benefit from speech therapy, but his mother is afraid that putting him in such therapy would stigmatize him and is thus resistant to such treatments.  Her fear is that the stigmatization will impair him more than his speech difficulties.  I disagree, but we each have to make our own decisions for ourselves and our children as to what is best for them in the long run. 

The question of the benefit vs. stigma of a diagnosis is clearly not a cut and dry issue, but I hope to hear your thoughts on the topic.

Lindsay M. Oberman, Ph.D. is a cognitive neuroscientist studying autism spectrum disorders.

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