What’s the benefit of diagnosis?

One of my 12 year old twins displays some behaviours that I would associate with being on the spectrum ( not severe ). He is academically doing really well across all subjects however my main concerns are around limitations in social skills , particularly as he moves to high school in September. 

My dilemma is whether getting a diagnosis is of any benefit to my son or whether , conversely, it might re enforce any feelings he has of being different to peers and add to his isolation.? If academically he is doing well,what benefits would an assessment and diagnosis bring ? Trying to balance against numerous on line articles referring to teenage mental health issues is undiagnosed condition. 

Any advice really gratefully received. Thank you 

Parents
  • Although I wasn't diagnosed until middle age, when I think back to my teenage years, my instinct is to advise you to look into the diagnosis.

    Although your son may be coping apparently quite well now, the next few years of his life will bring with them a lot of additional stresses.

    • A new school environment to get used to, most likely with a much larger school population than he is used to.
    • Drastic changes in his social environment as he and his peers go through puberty, start to discover their sexuality and mature into their adult personalities. I remember being absolutely baffled by these changes as teenager with Asperger's Syndrome. I thought I had worked out most of the social rules by then, only to have the rug pulled from under me and having to start learning a whole new set of social rules.
    • The subjects he chooses to study and examinations which he'll take at High School are very important to his future, and he will know this. This adds a whole new source of anxiety to life. At around the time of my mock 'O' levels, a year before the final exams, I burned out to the point that I ran away from home for a few days simply to get away from the pressure and the constant questions about my academic achievement and what I wanted to do with my future.

    In terms of what a diagnosis might mean to him, my gut feeling is that there is probably little to worry about. He's obviously an intelligent lad, and so has probably worked out for himself already how he is different to his peers - my first awareness of this began when I was still at lower school, 5 or 6 years old.  One thing that many autistic people find abhorrent is having a question to which we can't find the answer; this in itself can be a cause of much stress. He may well find some relief from getting a proper answer, and of course, there is no obligation to declare a diagnosis or do anything else with it unless a good reason comes to light.

    There is an important statement included in the most recent guidelines for autism, and it states that autistic traits may not become apparent until the mental load on the autistic person exceeds their capacity to hide those traits ("masking" or "passing").  I concur very strongly with this. An intelligent lad like your son, is most likely concealing his autistic traits to a greater or lesser degree - it is a survival mechanism which prevents us from drawing unwanted attention, being bullied or excluded, or simply to oil the wheels of social interaction.

    The danger is that new pressures on him as he matures might exceed his capacity to use his existing coping techniques, which can lead to what is sometimes known as "burn out". This often shows itself as an increase in autistic behaviours, extreme fatigue and aversion to people or environments which raise our anxiety levels. I feel that this is very much what happened to me in upper school, and continued to happen through my adult life, until eventually I was diagnosed and could understand what was really happening, so that I had some chance of managing it (which I now do far more effectively, improving my life immensely.)

    Have you discussed this with your son?  If so, what are his feelings about it? If not, it may be worth trying to gently coax from him what his own feelings are about struggling socially, whether he feels that he has unanswered questions about himself, and whether he equates socialising with "acting a part" rather than participating with his true personality. If he has any of those kind of feelings then a formal diagnosis is probably a good idea so that he can settle into it before exams, sexual feelings and adult responsibilities complicate things for him further.

  • I concur, like you say being Autistic and needing answers this is exactly what I am like. I have ASD1 (Aspergers) and I would have loved a diagnoses at a younger age, it would have meant so much to me back then, of course I would still have felt extremely different to everybody always being anxiety ridden but I would have known why and that was important to me at the time and still is. I finally got my answer when I was 34 years old, and perhaps maybe with the right help I could have lived a more fulfilled life instead of having to struggle at every juncture. I would say if you can get your child diagnosed at a young age I would do because in the UK anyway its more difficult to get a diagnoses on the NHS as an adult, I got mine after paying for it privately at the cost of £500 - can you believe. We're going through a similar thing now with my niece who I've said to my sister as AS and they're going to be testing her soon but they're weren't going to at one point and I told her it would be beneficial to her, going off my experience. They recently told my niece about this and I've had a talk with her, (she broached the subject, I just responded) and she was so happy when I told her I had it and she had someone to talk to about it. And we we're talking about the test and I just said to her ''like the great Philosopher Confucius said 'knowledge is power.''' You can only know how to deal with something when you know what it is you're dealing with. 

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  • I concur, like you say being Autistic and needing answers this is exactly what I am like. I have ASD1 (Aspergers) and I would have loved a diagnoses at a younger age, it would have meant so much to me back then, of course I would still have felt extremely different to everybody always being anxiety ridden but I would have known why and that was important to me at the time and still is. I finally got my answer when I was 34 years old, and perhaps maybe with the right help I could have lived a more fulfilled life instead of having to struggle at every juncture. I would say if you can get your child diagnosed at a young age I would do because in the UK anyway its more difficult to get a diagnoses on the NHS as an adult, I got mine after paying for it privately at the cost of £500 - can you believe. We're going through a similar thing now with my niece who I've said to my sister as AS and they're going to be testing her soon but they're weren't going to at one point and I told her it would be beneficial to her, going off my experience. They recently told my niece about this and I've had a talk with her, (she broached the subject, I just responded) and she was so happy when I told her I had it and she had someone to talk to about it. And we we're talking about the test and I just said to her ''like the great Philosopher Confucius said 'knowledge is power.''' You can only know how to deal with something when you know what it is you're dealing with. 

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