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The S word (stigma).

8/4/2016

4 Comments

 

I offer a short talks about autism that are followed by a Q & A session.  I try to be relevant to the specific audience. However I always try to convey how helpful it is to society at large, as well as to autistic people, if autism is considered an ordinary part of human neuro-diversity, a diversity which by its nature enriches and expands human experience and possibilities.

Recently I discovered I had failed in this when in the final minutes of the session addressing support workers I was asked, or rather told, "The idea of autism as a signpost is all very well, but it isn't really helpful to label people.  My friend has a thirty something son and he was diagnosed with autism but she has never told him, she just puts in place what is necessary to help him deal with it. Surely that is the kindest way, there is no benefit in dividing people up and labelling them, he's just a human being with needs"

This statement illustrates the damage caused by the perception of autism as a negative label rather than a simply a useful descriptive term.  An analogy would be that if you had a child who was extra sensitive to the sun, who got sunburn whenever the sun came out, it would not make sense to just coat them with sunscreen, without explaining to them why you were doing it. If you did not tell  them  about their sensitivity  to the sun and the consequent need to be careful and to apply sunscreen when they went out they would only be protected when you are around.  This would not enable them to understand and look after themselves and achieve independence.

Of course there is no stigma attached to having extra- sensitive skin, so it is unlikely that this information would be kept from a child. The issue here is not naming (rebranded in the comment above as "labelling") the condition, it is the stigma attached to that condition.  I have recently seen several examples of how this stigma affects ordinary autistic people and their families.

87  year old Edith came all the way from Australia to see me because she read my article about autism and therapy and thinks I will understand her. Edith is proud that someone she met in a café didn’t think she was autistic.  

Samantha is a mental health worker, she has an autistic daughter, she tells me she has not yet watched “The A word” because it might upset her husband who has not accepted he has an autistic child.

Emma consulted me about her son who has a Master’s degree, but now sits in his room with various ailments he won’t see a doctor about.  Emma has long suspected her son might “have Asperger’s” but never mentioned it to him “because he was managing”

What these very different people have in common is that the stigma attached to autism is preventing them from engaging in ways that could enable an autistic person to flourish.
I think stigma often (but not always) the most significant factor getting in the way of autistic people having the opportunity to flourish.  A simple thing anyone can do to help autistic people  is address this stigma, and accept autism as an ordinary part of daily life rather than an extraordinary label that needs to be kept hidden.
4 Comments

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