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

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At that age I didn't want to know what was wrong with me. I only knew I was different so being told what I had made me feel uncomfortable because it meant I was right the whole time I really had something wrong with me and other kids were right that I was really weird. Though I thought it explained why they thought I was stupid or ret*d or mean and why I acted different but I didn't know what it was then. Kids at that age are pretty insecured and feel very low self confident about themselves. It's an age where they want to be like everyone else and not want to be different.

" ... I could have then understood what others saw in me (good and bad)..."
My experience was I could see what people, particularly adults/teachers/etc., "saw" in/toward me and it was not their acceptance. I think I survived that period because I trusted myself not to be so effected by what others saw. My father was a big help in that. I somehow allowed myself to be me in spite of other's perceptions of me. Diagnosis was not common back then and I didn't have one, but in retrospect I am glad I was not defined as being "the problem" as a diagnosis often can do to a kid. I did and still do prefer being me to being some clinician's concept of a diagnosis. I'm fine. The world is generally cruel. That's my experience.

Last edited by horseguy2u on 01 Feb 2017, 1:38 pm, edited 1 time in total.

Sure there can be very good benefits in knowing as well as difficulties but the thing is if a person is not ready to hear something whatever that is, often no amount of cajoling is going to make a difference and will often backfire making the person more resistant. Unlike say an addict who refuses to accept he is an addict your son's approach seems well thought out so my advice is to accept it and have faith that he knows himself best and has made the best decision as to what best works for him.

Unless his brothers are significantly older and more mature then if you want to respect Joe's decision not to know I would also keep it from his brothers. It's inevitable one of them is going to use it as a pejorative insult at some point, it's just how young boys are.

I wish that I would have known at the age of 12. I would have made more of an effort to be a better friend at school. I would have kept a lid on most of the information about The Beatles that I wanted to share at the age of 13. I wouldn't have made up any stupid dances when I was in Grade 8, if I only knew.

Stupid dances? One of my "stupid dances" exists online for all to see as a YouTube video.
The dance took place about five years ago, at a Star Trek convention, while I was dressed in character as Q.
And I was much older than 13 ...
And it was lots of fun!

I am really proud of his brothers, the eldest is 21, so yes should and does know better than to say something.The other is only a year older than Joe and has always been very protective of him, is very patient with him, and never says anything derogatory to him. He really is amazing for a young teenager!

Many thanks for all your varied replies, it's amazing what different views you all have. Joe totally accepts who he is, and that he is different, which to me is enough. The ASD team want to work with him, to get him to "accept " his diagnosis, but in my mind he knows and accepts he is different, knows he has a diagnosis, and I believe when he's ready he'll ask what it is called.

If he accepts he is different does he really need to know the label he has been given?

We've got enough difficulties with him at the moment, why pick something else to cause a problem?

Thanks again for answering, Joe is unable to verbalise anything other than fact, so trying to find out his reasoning for things is impossible, which is where you all come in to give me some idea of what he might be thinking.

You've brought up something else we need to think about, he hasn't been in school since last June, his brother who is 1 year older is fielding questions from the other kids as to why he isn't at school, but we're unsure what Joe will tell them, if/when he goes back.

I am so sorry your mum tells everyone, that's awful for you!!

As for us Joe is just Joe, we all have quirks which we all accept. The world is a diverse place, and as someone said earlier Joe could be seen as a kid with a disability, or a kid with abilities ( he is one of the high achieving pupils at school). We see him as "just Joe" and listen to what he tells us, as you know there is no point in arguing with an autistic child, you'll push them into a meltdown.
A few years ago he couldn't go to school because his trouser pockets on the inside were the wrong colour, to him they were wrong, there is no reasoning, so he stayed at home that day .

Telling he himself his dx, is one issue.

Telling the whole damn world about it is something else.

If he doesn't wanna know I guess I would say respect that, but I have to add that I cannot fathom, nor relate to him not wanting to know his dx. If you really are an aspie then you are destined for a life of nasty labels being put on you regardless. So in effect he prefers to think of himself as a "a person of bad character" and a "neurotic" and "ret*d" to thinking of himself as "an aspie" . Why he would prefer that is totally beyond me. But whatever.

But the only folks in his life who need to know about his dx are the folks who...need to know (teachers maybe, but not fellow students).

I think as long as he is getting the help he needs, he should be fine not knowing his diagnosis. Once he grows up and need to advocate for himself, I think it would be good for him to know. Just in case he needs to get help with something. I also agree that the whole world does not need to know. Just people you trust, like family.

In my case, I had to know because I had to start advocating for myself at a little older than Joe's age. Otherwise I would've never gotten formally diagnosed, and I wouldn't have certain help for school right now.

At age 12, my parents yelled at me for things that I could not help, like overreacting to certain noises and taking too long to reply to their question. I was undiagnosed and knew I was different enough than other kids to be diagnosed with something. I wanted to know my diagnosis so I would know why in my parents' eyes I was always a terrible child. After I knew my diagnosis, it was a relief to confirm that I'm not just a terrible child. My parents made minimal effort to learn more about it, but they stopped yelling at me about a few things once I explained.

To him, apparently it doesn't matter.

To you, apparently it does.


I think you should respect his wishes.





Again, respect his wishes.

If at any time in the future he wishes to know, he'll surely ask.

Thanks for that feedback in the last sentence. We must be getting something right.
He probably doesn't need to know the label at the moment. I suspect there will be times where a bit of detailed information without actually mentioning the label might help him work out his own strategies to help himself or be aware of the sort of things which might be a stress point. Useful as an adult to know the sort of things which will be a stress point (unstructured social events are one of mine for example) and it can help him manage his life by not spending time on such things if he doesn't absolutely need to be there, and have a few scripts, management strategies and an exit line for those few times they have to be done.

All the best.

Explain to him that yes, he's still him and it's just him, but that he needs to know what others think about him so that he won't have any unpleasant surprises later with people who dislike him for that part of who he is (his autism). That said... please, please don't treat him like he has a disease or that autism is bad. He should never have needed a diagnosis for services; the shrink should have just written a note saying he needed help with whatever. And just the things he needed help with him. Labeling is a bad idea! I know because I experienced this firsthand. People will think your son has traits he doesn't have, just because of the label. Including negative traits. A whole assessment of his whole life and personality is not the school's business; a note is all that should be needed.

I'm not telling you off; I'm telling you what to expect. And what he should expect.

[quote="rowan_nichol")

Thanks for that feedback in the last sentence. We must be getting something right.
All the best.[/quote]

It is really helpful to get your opinions, after all people can tell me in here an awful lot more than any expert can learn.

Thanks for all the replies!