Is diagnosis worthwhile?

[AniieM]

My 17 year old DS has many traits of Aspergers. He can remember Pi to 80 places, will learn all the capital cities of the world in an afternoon, will spend hours doing rubies cubes. He is shy, socially awkward and has few friends. However he is bright, quick witted, good company with family but can be brutally blunt!

I am sure he must suspect he has some form of Asperger but I am wondering what is the benefit of a formal diagnosis. He is independent but desperate for a social life. I am not sure if the 'label' will serve him any use other than to understand his behaviours and nuances in personality?

Any advice or personal experience would be helpful. Thanks

It sounds like you haven't discussed it with him? I think that's got to be the first thing to do. It's hard sometimes to broach the subject, especially for a child/teen to be the one to open the conversation. If he agrees that he might be autistic, he could do an online test - they can't diagnose, but will give you/him an idea of whether it's likely. Look at the AQ or Ritvo tests on www.aspietests.org.

If he does think he might be autistic, it's up to him whether he thinks a diagnosis would help. It might be enough to have an understanding of what autism is and that being neurotypical isn't the only kind of normal. But to some people it's important to get a formal assessment. He might decide it's not important now but want to be assessed later on in life. I was diagnosed quite recently as an adult with grown up children. It was important to me because I wanted an official explanation of why I'm the way I am. It's not actually made a difference in practical terms - for me it's more for my own self-knowledge. But I think for younger people it could be useful e.g. for accessing disability services at university, counselling, adjustments at work, etc.

I think the really important thing is to broach the subject with your son and give him support in whatever he decides, and be aware that his decision might change as he goes through life.

I can only speak from our experience and my ds is a lot younger. Our family doctor warned against getting a formal diagnosis 'because it would stay on his record forever'...but I was looking at it from a different point of view as to 'so what, if this will help him in other ways?' My son was 9 a the time but I was worried about how on earth he would transition to Secondary so we went down the diagnosis route and obtained the ASD diagnosis when he was 11, just before starting at Secondary. So, so pleased we did as it automatically meant that he accessed the Student Support area and gets the support he needs. If we hadn't got the diagnosis and I'd just said he suffers with anxiety (his major presenting disability), I doubt he'd have received the same level of support. Obviously your ds is a lot older and has already had to negotiate so much already. I think the diagnosis has helped my ds because it helps him understnad why he finds some things very difficult (he is, like your ds, very highly functioning...but finds social situations very difficult). From our point of view, the diagnosis was a positive thing but only have experience of a younger ds. Good luck

I wish I could organise re-training for every doctor who thinks it will be stigmatising for autism to be on someone's record forever. If someone is autistic, they are autistic. By diagnosing them you are not labelling them, you're enabling them to understand themselves better and use that understanding to both gain access to support, and to be able to make better choices and live a more fulfilling life.

Yes placemark I agree. And I'm pleased we pushed for it.