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.

  • Thank you so much for your really considered reply. I can see exactly the points you make about coping with extra pressures from changing schools etc. We made a decision to move him from a 2 tier school model ( primary and then secondary school) into a middle school to delay the big change to high school for 3 more years . Unfortunately he now has to make the move in September and if anything I feel he is more socially isolated now than 2 years ago . 

    The masking is a really interesting point and again I can see that he does this - really difficult to get him to open up on how he feels, how school is and the same applies to school teachers who when I have raised my concerns previously tell me he’s a pleasure to teach and they haven’t got any concerns . 

    I have spoken to him about seeking help with his handwriting through an assessment and he is ok with that and a couple of years ago I gave him a book about what it meant to have Asperger s and asked him to see if he recognised himself - he only acknowledged the excellent at maths page !!  I agree I need to speak to him but not sure how to. 

    Your advice reassured me a diagnosis process would be helpful for all of us. Really grateful 

    Sorry for my late response - had site failure issues last night Grinning

    Sent from Yahoo Mail for iPhone

Reply
  • Thank you so much for your really considered reply. I can see exactly the points you make about coping with extra pressures from changing schools etc. We made a decision to move him from a 2 tier school model ( primary and then secondary school) into a middle school to delay the big change to high school for 3 more years . Unfortunately he now has to make the move in September and if anything I feel he is more socially isolated now than 2 years ago . 

    The masking is a really interesting point and again I can see that he does this - really difficult to get him to open up on how he feels, how school is and the same applies to school teachers who when I have raised my concerns previously tell me he’s a pleasure to teach and they haven’t got any concerns . 

    I have spoken to him about seeking help with his handwriting through an assessment and he is ok with that and a couple of years ago I gave him a book about what it meant to have Asperger s and asked him to see if he recognised himself - he only acknowledged the excellent at maths page !!  I agree I need to speak to him but not sure how to. 

    Your advice reassured me a diagnosis process would be helpful for all of us. Really grateful 

    Sorry for my late response - had site failure issues last night Grinning

    Sent from Yahoo Mail for iPhone

Children
  • You're welcome.

    The point you made about his teachers not noticing anything is something which other parents have noted here before (at least some of who's children were already formally diagnosed). Likewise, my teachers at school considered me a model pupil, and my academic performance was good.

    I think, again, this comes down to masking. When we are around strangers or out in public, we're more likely to feel that masking is absolutely essential. By the time we get home from school (or work, when we're older), the anxiety and fatigue from keeping the mask on all day can mean that we just have to let it down, now that we're back in our 'sanctuary'. This can seem quite paradoxical - in the more stressful environment, we appear to be much like any other shy child, yet in the more comfortable environment, our autistic traits can be much more apparent.