To tel or not to tell my teenager that he has AS?

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Sweetleaf
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16 Jul 2014, 9:29 am

I am not a parent, but grew up with autism without knowing till I was around 22 and was diagnosed at 24. I think it would be helpful for him to know....I mean obviously he has some awareness that something was different, hence the desire to be like others his age so he might like to know what that difference is. Also telling him would not prevent him from continuing to socialize having autism does not mean you never socialize and he wouldn't have to tell anyone about the diagnoses unless he wants to. I know a few times though I burnt myself out trying to keep up with being as social as people my age and then couldn't figure out why....So I guess if anything I think finding out you're on the spectrum can help with some of the confusion. Another aspect was I was able to let go of some of the self blame I had developed over traits that it turns out aren't actually my fault.

Also I personally would have been angry if I got a confirmed diagnoses of autism as a kid/teen....and found out about it, and that my parent didn't ever even bother to tell me because I would have felt like something important was being kept from me, or upset that they thought just by not telling me I'd somehow just stop having aspergers sydrome. At least I imagine I would have been upset about something like that.


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momsparky
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16 Jul 2014, 11:28 am

Though, to those of you who weren't told - maybe it means that there needs to be a conversation later in life where you explain that you were concerned a label would have held you back, and your reasons for thinking so.

I think if I were in that situation, I'd prefer to have been told, but later in life I would accept the explanation of "You worked so hard and succeeded at socializing, and were giving yourself everything you needed to succeed. Since, because of your efforts, you didn't need medical intervention, I didn't want to take the chance that having a label would demoralize or discourage you."



YippySkippy
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16 Jul 2014, 1:33 pm

Quote:
I think if I were in that situation, I'd prefer to have been told, but later in life I would accept the explanation of "You worked so hard and succeeded at socializing, and were giving yourself everything you needed to succeed. Since, because of your efforts, you didn't need medical intervention, I didn't want to take the chance that having a label would demoralize or discourage you."


The thing is though, a lot of aspies who are "successful" are working really really hard at it, and experiencing a lot of anxiety and depression and burnout that others may not be able to discern. Telling someone you didn't reveal their Asperger's because they were so successful can sound like, "Since we couldn't see your inner struggles, we decided to ignore them. As long as you seem normal to others, your feelings are unimportant."



momsparky
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16 Jul 2014, 3:26 pm

I hear what you're saying, Yippy Skippy - which is why I'd have preferred to know. However, I'm not this kid nor am I his mother or doctor, and I concede that I may not have enough information.



Waterfalls
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16 Jul 2014, 4:10 pm

Some kind of communication would be important to me. Not that there are limits but that here is what's it is, here is the reason. Now go work on this here is how.

Because unless I feel the diagnosis is an error, some kind of problems exist by definition the child or adult is or has in the past needed significant support.

I know someone who said there was no reason to tell her child, child has had many many years of services and is diagnosed with autism. Fully mainstreamed with special Ed support. I'm thinking, like what, do parents think child is stupid? She is not. She knows she gets services and always has. But not allowed to talk about it.

I just think it's good not to keep a secret like that. And if the school knows, only reason to try would be if I thought child would tell everyone and it was not obvious.....only it probably would be.



Italymum
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01 Feb 2015, 8:26 am

I thought I may give news about the evolution here.

I still haven't told my son he is an Aspie.
In September he started high school (he is almost 15 now) and worked very hard on establisbing good relationships with the other kids, and I suspect he even has an occasional girlfriend, although being very secretive he does not say much.
The intense social life he had in the first two months has considerably slowed down now but I know for a fact that he gets along well with his schoolmates, just like a "normal" person would.

And that is the point, really. He is every day less Aspie. All the traits have slowly, through the years, diminished in intensity. I guess it it quite normal, everyons learns new skills and so do Aspies.

I was called at school to have some interviews with teachers who sensed something strange in him, and I explained them what is actually different with him. Some of them actually KNEW WHAT I WAS TALKING about and, believe me, it is not so obvious here in Italy.
He gets better everyday, had a good "behaviour" B ( it is part of the evaluations here in Italy), struggles with maths and chemistry, is an excellent foreign languages learner, wants to travel.
Still has tantrums when contradicted or feeling frustrated, but in the whole he is everyday easier to deal with, a nice guy on the whole.

Plays a lot of piano, being self learned but wanting to take lessons now.

In the end, I still think not to tell was the wright choice. I will tell him, maybe at the end og high school, before he goes to university or college.



kraftiekortie
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01 Feb 2015, 12:50 pm

I'm happy to read that your son is thriving. Truthfully, there's lots of oddities amongs teenagers--so perhaps he doesn't stand out so much. Also: isn't Italian culture more tolerant to diffences than some others?

I believe, when you do tell him, that you should emphasize the "difference" aspects over the "disorder" aspects, and that everybody is good at some things, not so good at others--just like people with Aspergers.



YippySkippy
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01 Feb 2015, 2:39 pm

Quote:
And that is the point, really. He is every day less Aspie. All the traits have slowly, through the years, diminished in intensity. I guess it it quite normal, everyons learns new skills and so do Aspies.


He is every day just as much Aspie as he ever was, and always will be. He has learned, and will probably continue to learn, coping mechanisms that help him disguise his symptoms. However, it will always require immense effort for him to hold that social mask in place, and this effort sometimes leads to nervous breakdowns or other stress-related problems in adulthood.
(See threads discussing adult "burnout")



momsparky
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01 Feb 2015, 4:00 pm

To be clear, I don't think either of us are trying to second-guess you, but I agree with YippySkippy, being in that place myself.

Nobody would guess that I am on the spectrum - in fact, after my son was diagnosed and I began to suspect, I regularly got pooh-pooed by close friends and family when I brought it up - even the ones who know I face depression and anxiety that occasionally become crippling enough to keep me in bed for a day. Having a frame for "autistic burnout" has been an important tool for me, because the way to deal with it is totally different than for depression/anxiety alone.

You know your son best - I think we just want you to realize that at some point all the compensating takes a huge toll, and it's important to have a viable explanation for why, for instance, after a party where everybody liked you and you did really well, you come home and immediately fall into bed and sob uncontrollably for two hours. I felt insane - like somebody-needs-to-lock-me-up insane; having a sensible explanation for why I couldn't handle positive interactions helps immensely.



Italymum
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01 Feb 2015, 4:36 pm

Momsparly and yippyskippy, i read you with great interest! Your advice is very precious to me.
Undoubtedly a part of me very much wants to believe that everything is just fine.



Italymum
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01 Feb 2015, 4:48 pm

Italymum wrote:
Momsparly and yippyskippy, i read you with great interest! Your advice is very precious to me.
Undoubtedly a part of me very much wants to believe that everything is just fine.



kraftiekortie
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01 Feb 2015, 4:51 pm

But everything is no necessarily NOT FINE with Aspergers. It could be VERY FINE, indeed.


As YippySkippy and MomSparky point out, people with Aspergers develop coping mechanisms. So does every human, BTW. It might prove more difficult with Aspergers....but it's by no means a deterrent to a successful life.



Italymum
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01 Feb 2015, 4:57 pm

Italymum wrote:
Momsparly and yippyskippy, i read you with great interest! Your advice is very precious to me.
Undoubtedly a part of me very much wants to believe that everything is just fine.

Of course i know he will always as aspie as ever.
And yes, he has learned new ways to cope and be accepted, and that is bound to be very stressful at times.



Last edited by Italymum on 01 Feb 2015, 5:10 pm, edited 1 time in total.

momsparky
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01 Feb 2015, 5:10 pm

That is completely right; I don't think anybody here is intending to prophesy doom and gloom for your son. Those of us who grew up with AS before the diagnosis existed know that, compared with our children who know, we were disadvantaged to some degree.

The main issues with disclosure are these: one, that AS requires very specialized help and intervention at the moment (hopefully with education of the theraputic community this will change) and to seek that out, you need the word "autism" - this is part of what YippySkippy and I were talking about. I've been diagnosed with everything from agoraphobia to depression to bipolar, none of which offered interventions that helped.

Second, often when a child knows "something" is wrong - as was the case for my son - they tend to imagine something significantly worse than autism. My son was convinced he was "bad," or "crazy." When we were finally able to give him an explanation that made sense, he was significantly more able to manage - and now he has language to use to advocate for himself when things go terribly wrong (he doesn't typically disclose unless there is a huge mix-up, but...there have been huge social mix-ups.)

Again, not trying to tell you what to do - my son is nearing fifteen and I know how delicate anything with a teenager is - just keep in mind that the diagnosis can be a tool, and watch for situations where that tool might be necessary. (There is a section in the Parenting Index about disclosure if I didn't post that already...lots of ideas about how there if you need them.)



Italymum
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01 Feb 2015, 5:14 pm

Thanks, i will read about disclosure and burnouts.
Only tomorrow as i need some sleep :D now



Tawaki
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03 Feb 2015, 2:59 pm

I asked my Aspie husband about this...

My husband always *passes* on the surface. He passed at school, passed marginally at work, and passed enough as a NT for me to marry him.

He is a burned out at 54. He was diagnosed at 50.

The problem is, he has to put in triple the amount of energy to pass as NT. Picture you being tossed into the ocean and having to tread water. That is how life feels to him.

Had my husband known earlier, he could have made different choices. Where the rubber met the road is when we got married. I had no clue what the hell happened to our relationship. He needs a good 5 day recover time away from humans to regroup after any social interaction. So the day in and day out of marriage damn near fries him. He has the social skills of a twelve year old. He is always scrambling to be appropriate. The anxiety he feels at *being a fraud* is off the charts.

My husband could manage with a life style of a college student. A small job. A dormer room. Non demanding friends. A hot plate a microwave. Nobody having real expectations. You son could be doing well, because there are real no true life expectations right now.

The *adult world*

A serious career
Any type of long term relationship and those expectations.
a house/apartment
loans
children

Those stressors are so much more. Right now our kid is sick, and my husband is losing his mind because kiddo is coughing, which is pinging his misophonia off the charts. He can't deal with sick, doctors, communicating with doctors, getting medication in a timely fashion. He is in near meltdown mode. And my husband doesn't want to be. I know that.

My husband lived most of his life not knowing he had ASD, and he suffered not knowing. Had he known, he at least could make choices. He could have gotten accommodations. He wouldn't be so emotionally crippled, by the what he believed to be repeated failures.

It is what it is. If your son truly has ASD, and doing fine, great! I don't understand why you would not tell him. You telling him will not diminish who he is as a person .

My husband told me he always knew he was different. That he knew he did not truly relate to people at a very you age. Because he was *fine* on the surface, his parents never knew what a hot mess he was inside.

I don't believe in keeping secrets, and would probably never trust my parents if they did that. I figured they were just ashamed, and wanted to blend in with all the other families. Like ..oh..nothing to see here...no matter how happy happy they tried to tell me otherwise. Especially if they said it was for my own benefit.

Hell, we told kiddo at age 6, Dad has Aspergers and all that goes with it.

Secrets carry burdens, and it isn't worth it.