13 year old son struggling to accept his diagnosis

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SAP1228
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17 May 2022, 1:56 pm

Does anyone have any advice for my 13 year old son? We didn’t talk to him about his autism until a few months ago. He never seemed to struggle with social situations at school and didn’t seem to need to hear about it for most of his life. As he approached puberty, he seemed to know something was different about himself and started to ask about that, so we had that talk with him. Now that he’s had time to process it, he’s very stressed about it. He had a meltdown yesterday because he doesn’t feel like he could be autistic. We’ve known since he was 18months old and got the diagnosis at 4 years old. I want so badly to help him see it as part of himself and not something he has to fight or overcome. If anyone has some wisdom, we would appreciate it.

TIA.



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17 May 2022, 2:45 pm

SAP1228 wrote:
Does anyone have any advice for my 13 year old son? We didn’t talk to him about his autism until a few months ago. He never seemed to struggle with social situations at school and didn’t seem to need to hear about it for most of his life. As he approached puberty, he seemed to know something was different about himself and started to ask about that, so we had that talk with him. Now that he’s had time to process it, he’s very stressed about it. He had a meltdown yesterday because he doesn’t feel like he could be autistic. We’ve known since he was 18months old and got the diagnosis at 4 years old. I want so badly to help him see it as part of himself and not something he has to fight or overcome. If anyone has some wisdom, we would appreciate it.

TIA.


It might be worth getting a second diagnosis to confirm or disprove. Autism is mainly problems with social skills and you said he had no problems with social skills that you were aware of.



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17 May 2022, 3:44 pm

My brother has been diagnosed with Asperger's but didn't have trouble with social skills as a child at school. He was on the shy side, lacked confidence and hated sports, yet he still fitted in with the popular boys all through school and made friends easily.

Also your son must be quite severe if you recognised it at as young as 18 months old. All babies under 3 have autistic-like traits that they grow out of, so an autistic baby has to show very peculiar signs to be noticed as autistic, like not talking at all or making any eye contact.


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17 May 2022, 7:02 pm

I think he is finding out about the label at one of the most sensitive developmental ages he'll go through. I realize this is too late for you, but I believe it is a much easier diagnosis to accept at younger ages. Just FYI to other parents reading who haven't told their kids yet.

Regardless, you are where you are and I think the emphasis to him should be that THE LABEL DOES NOT CHANGE WHO HE IS. This is a SPECTRUM, and a key to answering some of his unresolved questions about himself, but HE is no different than the self he has always perceived himself to be. Labels aren't who people ARE, they are TOOLS for solving specific issues and difficulties. He should see his label as meaningless outside of the limited number of specific circumstances where he already can see he is different from other people, and then use the label as a starting point for sorting through how he might understand and handle those differences. Even then, he remains a unique individual and no label, no matter how well suited, can define any unique person. No one is their diagnostic label; all humans are unique beings. Either knowing there is a diagnostic label to use as a starting point will help him find answers he is looking for, or it won't. Some keys fit more doors than others; you try the keys out and see what happens.

You may also want to point out that vast numbers of successful and well known businessmen and celebrities have either disclosed their own ASD diagnosis, or are suspected of having one. It is far more woven into society than he is likely to realize. Individuals like my son go through life without anyone realizing their are ASD unless he chooses to specifically tell him. We needed that diagnostic key to help him get through school and figure out how to mold his world to his needs, but now that he has done that, nothing about him at all makes him seem like anything other than a happy, career-tracking, young professional in the tech world. Labels get meaningless once you find the road that suits you. They help you find the road, but they don't determine it, and they don't stick like glue once on it.

Finally, labels can be wrong. Since they are tools, if the label can't open necessary doors, then it's time to re-think the label. But he should first try opening the doors with the keys you've just given him.

(PS - my son is very sociable. No trouble at all getting along with people. But he builds a world of friendly acquaintances more than true friends. As, I've realized over the years, do I. Regardless, kids can be social and ASD. It was a huge obstacle to getting my son's diagnosis, but the diagnosis, in my son's case, is right.)


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18 May 2022, 7:36 am

It may help to present him with an analog version rather than a digital one. It is not like the choice is a basket case or normal. There are varying degrees of this neurological variation. In addition there are varying degree with which one develops skills at integrating with the larger society.

He is at the age when he is just beginning to develop his adult social skills. As he does so, it can be helpful to him to be sensitive to the reaction of others. It could even be that being sensitive to others might make him more socially skillful than other 13 year olds.

A "diagnosis" can make one feel that they have been assigned to a leper colony. It might be more helpful if he recognizes a particular deficiency in a skill area that you help him with ideas as to how to improve or compensate in that area.



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18 May 2022, 11:13 am

The best thing to do is not to let anyone blab it to his peers. Some adults think that by letting the whole class know a child has an invisible condition like ASD that they will become more accepted and understood. Kids don't work that way. As soon as I was diagnosed as a kid, my parents told everyone in the family, and the teachers told everyone in the class, and while my family were more empathetic about it, the other kids in my class just alienated me and were afraid of me just because I had a label. It didn't stop me from being called "the ret*d kid". I think my social life would have been better if the other children didn't know about it.

Plus your son doesn't want to accept it so probably feels embarrassed about it like I did (and still do). So keeping it among yourselves and very close family only may be better for his self-esteem. Think about your son, and don't assume that just because he's a child it means he should have no control over anything. This thing he now knows he's got is going to be with him for the rest of his life and if he doesn't want many people knowing then it is best to respect that.


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18 May 2022, 12:02 pm

My 12 yr old clapped his hands over his ears and ran out of the room when I tried to broach the topic. He's fine with accepting that he has Tourette's and OCD, though, which came up years ago.

I'd say to let your son take the lead. You've brought it up; he heard you. If he needs the information, he can get it. If he doesn't want it or isn't ready for it, don't push it. Let him decide.

Good luck



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18 May 2022, 12:10 pm

Quote:
My 12 yr old clapped his hands over his ears and ran out of the room when I tried to broach the topic. He's fine with accepting that he has Tourette's and OCD, though, which came up years ago.


When I was a child I would hit my mother if she mentioned the dreaded A-word in front of me (not really violently, just slapped her arm).

I happily accept my ADHD diagnosis and I'm even happy to tell people if need be. But I just cannot accept autism. I can't and I won't.


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18 May 2022, 12:17 pm

13 is an awkward age for everyone. Especially with plenty of peer pressure and the desire to fit in already going on. Its not a great age to also learn that there is something significantly (and permanently) different.

This isn't something a parent can fix for their child. Self-acceptance takes time, certainly more time than he has had so far. If he's not ready to accept it now he doesn't really have to. Social awkwardness is normal at his age whether he is on the spectrum or not, and the general advice you might give is really the same as it would be for any child. Let him take the lead on this, because you really can't put your own timeline on it.

As long as he doesn't need more academic help than he is getting from the school and/or hasn't needed accommodations related to the ASD, leave it out of the equation, but let him know he has your support if and when he wants it.