Son doesn't want to know his diagnosis......

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Joe is 12 and has been brought up knowing that all children are different, and that he is different from a lot of kids. He is aware that he is different enough from most kids to be diagnosed with something, but refuses to be told what this is, though he agreed we could tell his brothers.

So my question is, does it matter that he doesn't know his diagnosis? I think it will help him so he can research it, but he just says he doesn't care what it's called, it's just him- which I also totally agree with!!

So from your experience did it help once you knew your diagnosis so you could understand more about yourself, or does it really not matter as he's totally at ease that he's different, and to be honest doesn't give a monkeys what others think of him!

I reckon 'Joe' has a good starting point, in that not giving the proverbial monkeys what others think means he has one less vulnerability which a bully could use against him.

That position is one which one can mellow with age and the occasional careful briefing.

I think he is probably taking the right course for him at this pint in time and not taking on a label which on occasions can be used to lower expectations and overlook strengths and abilities which need to be stretched.

The details may be useful though.the occasional chats which bring out any areas where brain ng autistic gives a blind spot and can make life awkward or hard work.

I think I had successes because when I was growing up there wasn't a technical term such as Aspergers which I could have used to lower expectations and it was possible to work with the combinations of abilities and circumstances which have set up enough successes that when assessed the assessor identified my autistic nature but also the successful adaptations and at times the habit of keeping out of the situations where that autistic profilecwpuld set up some failures to the point where it was not clear enough that that profile had caused enough hassles to be classesvas a disability.

I suspect I would have resented being given a label at the age of 12.

Yep. At that age I was going by a different spelling of my given name, and trying anything to make myself my own. It is common. Besides, if the son is smart enough to agree with his siblings knowing about his "mysterious" diagnosis while not agreeing to share the same information to others shows a high degree of decision-making. He's becoming his own person. That's all.

I was diagnosed with Aspergers Syndrome when I was 5. I had no idea what it was or what it meant. At that age I didn't really care too much. It wasn't until around 15-16 that I began looking into it more to better understand the impact it was having on my life.

Give Joe time. He will learn more and more about it through his own life experiences. Sooner or later he will come to accept this aspect of himself and will discover his own methods of dealing with those challanges he faces.

Speaking of myself, I was very uncomfortable hearing anything about it for some time after getting diagnosed. I wasn't given much help, I didn't know how or wasn't capable of asking for it, sometimes waiting to come to terms with things isn't the best course either.

Well, it helped me to know about my diagnosis, because it explained why I genuinely believed I had been adopted (apart from my father, who I hardly saw, I don't look like any of my family). And it explained why I was so different and a complete outcast.

As for telling people about his AS, I'd just keep it to family. When I went to senior school, my mother insisted that my class knew about my AS, naively thinking they would be more sympathetic. Nope. The whole of year 7 was told about my AS. My best friend at the time told me everyone was saying they didn't care about me, and, I refused to go back because I was so ashamed. Yay!! I mean, that was so much fun. My mum still tells everyone, some people are more tolerant, with others it has the opposite effect, and they pick on you more. But she tells people regardless. Cos it's not like my life is private or anything like that.

While I'm at it, don't just focus on the way other people treat your son, but how you and his brothers treat him.

Last edited by smudge on 01 Feb 2017, 9:50 am, edited 1 time in total.

Thank God nobody labeled me as autistic or Asperger's growing up.
Instead, I was labeled "gifted."
Sure, I've always had challenges.
It would have been much worse if I'd been labeled with a "disability"
instead of with a high IQ.
One is looked down on by society,
the other is looked up to ... at least in theory.

I would have appreciated knowing when I was about 11 to 14 years of age. I believe most children, autistic or otherwise would understand (or come to understand quickly) what autism is at those ages. Not much can be done to educate the few remaining children (and the adults they become) who are hostile.

I'm a NT sociologist who studies adults on the autism spectrum. I also have an interest in emerging adulthood of autistic people. What Fraser is saying here is something I would second. Your son will probably want to dig into this further in a few more years. And be prepared for the autism diagnosis to be blended with regular teen angst, identity questioning, and other emerging adult feelings and thoughts. In the future it might be hard for you as a parent to tell the difference between when your kid is being bratty or trying to take advantage of you and when he seriously needs you to do things differently for him. So just be prepared for that. Sounds like you're doing a good job of educating yourself already.

I suspected I was different from others from the time I could remember, but Asperger syndrome was not a formal diagnosis when I was growing up. I only learned about it when I was 32 years old and read about it at the library. All of the traits fit me. I don't want a formal diagnosis, because I don't want to fall into the clutches of an evaluator who will limit my growth based on a test I was given on a certain day. I have had that happen to me way too often.

In my case, I've learned to not tell people about being autistic,
unless they show signs of being autistic themselves.

...

There are people who strive to achieve a state of "not knowing" through meditation. This goal is to counter balance the illusion of "knowing". Example, we take out a 5 year car loan "knowing" we can pay it off in five years, but in objective reality we have no idea if we can. We might lose our job, become ill, etc. Achieving a state of not knowing brings us to the truth of our vulnerability and of our hope, i.e. we can pay off the loan, in the present moment.

Knowing a diagnosis can carry with it all kinds of implied future determinates that might not be true. There is power in knowing what is happening now as opposed to in some unknown future. I'd therefore recommend going with the impulse of not knowing now and in doing so, trust that change is constant. Good luck.

I think what helped me most was my parents doing research and basically becoming like occupational therapists. I've known that I was autistic since a young age, but I didn't start taking an interest in it until I was 13, and there's still a lot of research I've never done others talk about here often, because I don't want to start over thinking it while I'm still growing. I think it's a good idea that he doesn't want to grow and develop based on a diagnosis.

My son is 15 and has some strong traits of AS but he has stated outright to the team who were thinking of it that he doesn't want to be given a label. He is a mature and thoughtful lad and I told the team that so long as they could see no significant harm to him coming from his choice I would back his decision 100%. So we have agreed not to go forward for a diagnosis. I am content that this is the right choice for my son at the moment. If he ever changes his mind I would support him in that too.

On the other hand I was diagnosed and it has helped me quite a lot. However I don't think I would have needed it had I not had a chronic pain condition on top of the autism. Because the pain condition takes up so much of my internal resources there is little internal energy left for navigating social situations, dealing with change from routine and coping with sensory issues. This makes my autism more obvious so the diagnosis helps.

But, your opinion that "it's a good idea" might be informed by your own knowledge of being "autistic since a young age" yourself. One of my reasons for wishing that I could have known about my autism when I was a 'tween or early teen is that I could have then understood what others saw in me (good and bad). By knowing that, I would have been informed to avoid certain behaviors while embracing others. I actually did learn such things about myself a few years later, but it would have been a huge improvment in my own life to have known earlier. At the time, I was incredibly isolated and shunned by others. I believed their reasons (I was weird, strange and ret*d). Harboring those beliefs caused discouragement and depression. So, no; I still believe that children of a certain age, dependent on their life skills, should be trusted with their autism.

It might be somewhat of a phase, or his way to cope with it at the moment...perhaps in time he will become curious what the diagnoses is, to learn more about it when he is ready.