Fear of and Necessity for Labels

I have really found it interesting reading these comments. Certainly lack of public and social services/health services understanding of adults makes me wonder if we are any further forward.

And parents groups - I belong to one from a professional interest but it is useless for me as an aspie - I cannot fathom the notion they have that they are only about carer's issues. The only over 20s on the spectrum that attend are the ones that came there with their parents for a decade or more, and still come with their parents - like they are on show.  And I agree, NAS should address adults more.

I'm glad to have the diagnosis to better understand myself. I couldn't have had it when youger as I only survived interventions because my parents, with a medical background, wouldn't allow any intervention. Though they didn't have answers, they clearly saved me from some pretty horrible issues of misdiagnosis and medication - so I guess I have to be grateful - just it didn't feel that way growing up.

But I find it difficult to be open about it. Shortly after diagnosis I was at a professional conference, and in a workshop on "correcting" young people with autism, which I found horrible, I owned up to being on the spectrum. I was horrified to spend the rest of the conference in "does he take sugar?" mode, getting unwanted sympathy and attention from professionals I'd hate to see going near anyone on the spectrum.

Although an extreme case, that has guided my thoughts on this. I'm discrete who I tell about it but eternally grateful for the knowledge. Working in education and giving educational support to young people on the spectrum I've been very aware of the two lifestyles and the reasons for their choices. For some people it is important to appear normal even where fitting in is hard, so making it known may well be unwise. I've seen others who tell everyone in every situation, even in the face of adverse reactions.

I don't tell young people I'm helping that I have Aspergers. It is really difficult to work out whether that strategy would be good or bad.

So can I echo previous commentators here and ask NAS to give some thought to this dilemma. It is important that there is sound advice backed by good practice and voices of experience, the pros and cons of "wearing" the label.

I have really found it interesting reading these comments. Certainly lack of public and social services/health services understanding of adults makes me wonder if we are any further forward.

And parents groups - I belong to one from a professional interest but it is useless for me as an aspie - I cannot fathom the notion they have that they are only about carer's issues. The only over 20s on the spectrum that attend are the ones that came there with their parents for a decade or more, and still come with their parents - like they are on show.  And I agree, NAS should address adults more.

I'm glad to have the diagnosis to better understand myself. I couldn't have had it when youger as I only survived interventions because my parents, with a medical background, wouldn't allow any intervention. Though they didn't have answers, they clearly saved me from some pretty horrible issues of misdiagnosis and medication - so I guess I have to be grateful - just it didn't feel that way growing up.

But I find it difficult to be open about it. Shortly after diagnosis I was at a professional conference, and in a workshop on "correcting" young people with autism, which I found horrible, I owned up to being on the spectrum. I was horrified to spend the rest of the conference in "does he take sugar?" mode, getting unwanted sympathy and attention from professionals I'd hate to see going near anyone on the spectrum.

Although an extreme case, that has guided my thoughts on this. I'm discrete who I tell about it but eternally grateful for the knowledge. Working in education and giving educational support to young people on the spectrum I've been very aware of the two lifestyles and the reasons for their choices. For some people it is important to appear normal even where fitting in is hard, so making it known may well be unwise. I've seen others who tell everyone in every situation, even in the face of adverse reactions.

I don't tell young people I'm helping that I have Aspergers. It is really difficult to work out whether that strategy would be good or bad.

So can I echo previous commentators here and ask NAS to give some thought to this dilemma. It is important that there is sound advice backed by good practice and voices of experience, the pros and cons of "wearing" the label.