A question for teens & adults on the spectrum...

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Who first told you that you were on the spectrum? Was it your parents? Or did you find out on your own accord?

How old were you?

How did a diagnosis affect you? Was it a positive or negative?

I'm asking because my son is being assessed (he's almost 4) and when we have a diagnosis, I want to be prepared for many things that he may feel when he finds out later on in life. Which brings me to another question.... when do we tell him or Is it best not to tell him? Is it better to not tell the school?

All in all, I dont want him to think that there is something "wrong" with him... because there is'nt... he's perfect! (as I'm sure all of you are here too). I hope you know what I'm trying to get at... As adults we know that being on the spectrum is not a huge issue in other words we are still human beings but have a few quirky ways if you like... but as a teen things seem so much more magnefied and harsh and i guess being a teen is hard enough IYKWIM.

I just want to do whats in his best interest in life; So would a diagnosis for him later be a relief or make things worse?

Thanks so much, I appreciate all replies

I think it's good to know. With a dx, you know what's wrong and can try to deal with it to some degree, like social training. I found out i had AS in 10th grade, i think. It was to late to save my social life.

When an aid at school first told me they thought i had "ass-burgers" i thought it was a bad joke. But the more i learned about it, the more i understood how well it fit.

Overall i'd say things worked out for the better, but i wish i'd known earlier in my life.

Your son is young, so he probably won't understand the full implications right away. But i think understanding his nature will make his life easier in the long run.

I'd _definitely_ tell the school. I've got a lot of help at school due to my diagnosis. Admittedly, I've also been patronized and talked to slowly because on my record it doesn't actually say I have Aspergers, just that I have a disability.
I was told when I was 11 and couldn't fully comprehend it and how much of an impact it'd have on my life, so I didn't feel that much, I was just glad there was an explanation.
I don't think you should hold off until they're like 16 or something, or I'd be pretty PO'd with you(I being the kid). If you tell them when they're young, like 8-11 they can later research into it for answers if they want. I don't think they'd be uninformed. I'd find it very depressing if I were to find out now(probably because I know the full effect, but I can never be sure).
Hope this helps.
EMZ=]
EDIT: I think if you do tell the school, specify he's not slow. It really annoys me when teachers make assumptions about me and send me out because they think I have difficulties reading or something. Even the people in the disabilities department talk to me like a 5 year old despite the fact they know I'm not an idiot.

Was diagnosed at 3, I think I found out at like 12. I was kind of upset that I wasn't told about it earlier, but nothing major. It is hard to say how it changed my life, because I was going through changes in my personality at the time that were pretty drastic. Sure I began to have doubts about my ability to socialize, and realized I had trouble fitting in, but those had not much at all to do with my diagnosis.

Whatever you do be careful he doesn't use it as an excuse for anything other then that he is different, which all people should realize to some extent. I always see kids that tragic things happened to them and they turn into brats and expect so much more from everybody and whine about it when they don't get their way. I've seen it in my second cousin with the death of his father, I've seen it in a kid who suffers from cancer, and this physically disabled kid my mom works with. It's just a pet peeve of mine, probably from my mother .

Last edited by LucidDreamGod on 28 Feb 2009, 7:50 pm, edited 1 time in total.

I was diagnosed in grade 7 I think, and I found out somehow, don't remember how though, I think my parents told me. But I found out quickly. I blew it off thinking there was nothing wrong with me, and that everyone else had something wrong with them. Personaly, I would have preferred to have known, been told what it means, and have had help working with it at the time my dad wanted to get me diagnosed, which was age 4. My mom was completely against therapy/medication/diagnosing/etc when it came to mental conditions (she didn't want to know her life wasn't going to be perfect) so I didn't get diagnosed until my dad left her and remarried to someone who actually cared about other people who knew something wasn't quite right, and so they did everything they could to get me diagnosed. That involved me getting a misdiagnosis at one point. I went through hell because of the misdiagnosis. Of cpurse, had I have been dsiagnosed when I should have been, my life probably would have been worse for me at this present time, as I wouldn't have met some of the people that really make my life worth living, so it is not something I regret.

I will give the same piece of advice I would give anyone. If you decide to tell the child about the diagnosis, be prepared to become an expert on the disorder, and be open to have discussions with your son. If you become an expert, it will be easier for him to learn about himself and you will be able to better help him, and the mutual understanding will make his life easier. (assuming you can help him find words for what he is experiencing)... That is something I wish I could have had in my house as a kid, so I could have known what certain things I experienced were, and what they meant, and just had someone to talk to about stuff.

found out on my own accord, got DXed two years later



56



it was a relief and a curse


yes




Being on the spectrum matters no matter how old you are, it's not like other people don't see it after a certain age. I want to be as upbeat about this as possible 2PreciousSouls, and I care a lot about you having a positive attitude towards your children's future. But it is not my experience, nor the experience of other adult AS I have extensive contact with, that it's 'not a huge issue,' even if we are able to support ourselves and do our own domestic tasks and generally keep ourselves together. The idea we just become 'quirky adults' is a comforting idea, I am sure, but living it is a different matter entirely.
I wish you and your beautiful family all the best.

Merle

Thank you for your replies so far... You have all been a HUGE help!

I sure will become an expert on the subject ... and I think also as you say, support and love goes a long way. There would be nothing worse than having this disorder and not being understood by your parents.

hugs to you all!

I spent a lot of time thinking there was something wrong with me--that I was stupid, lazy, and immature. My mom knew I should have been diagnosed when I was 11 years old and AS was first described; but she didn't want me "labeled" and refused to get a diagnosis. (My mom is an occupational therapist.) As a result, I spent a long time being told that I was lazy, and "wouldn't" do things that were very difficult, and too immature to "control myself". I had no idea what was happening, and why I was different, and no other explanation than being lazy and immature (I didn't believe "stupid" because I got good grades).

If I'd been told earlier, I might have learned why I was different and how to use it; but it took until I was nineteen and a quick-thinking psychiatrist with an Asperger's son caught the missed diagnosis. By then, I had been failing in college, lost over a dozen jobs, and been kicked out of school for self-injury and put in a mental ward for depression. After that it took two or three years to really understand myself and how my brain worked; but finding out I have AS was the information I was missing.

My mom, faced with an official diagnosis and the fact that I'm receiving disability payments, vacillates between insisting there's "nothing wrong" and researching group homes to stick me into. Apparently she has no concept that disability doesn't have to be severe. Me... I'm working with vocational rehabilitation, to get a college degree. I've been making good grades lately, now that I'm getting help with studying and a quiet place to take tests, and the classes aren't easy, either--I'm a biomedical engineering major. If I'm lucky, a college degree will lead to the ability to have a job I have the skills to do, and that means I can leave living on disability payments (less than two-thirds of federal poverty level, and you get no privacy) behind forever.

Points to get across to the kid:
1. He's got this thing called AS that makes him think differently from most people.
2. There's nothing wrong with having AS and nothing wrong with some things being difficult for him.
3. You love him just the way he is, AS and all.
4. If anybody ever mistreats him, he's to tell you and you will go mother-bear on whoever it is.
5. He can get better at what he's bad at, and get really good at what he's good at. (Actually, emphasize the stuff he's good at, because those are the things that'll get him a job later on.)

AS often comes with some really wide gaps between skill levels. Me during the third grade: Math at 1st grade level, reading at 6th grade, physical coordination and social skills of a three year old, vocabulary as good as many adults'... When they're all over the place like that, you may end up with a kid who's in gifted and special ed at the same time. The trick is to use those strengths, both to cover for the weaknesses and for their own sake, to find some place in the world that's right for you. Too many programs focus on extinguishing the weaknesses, and ignore the strengths... that's a bad approach; it's bad for the self-esteem and bad for your future, because it's the strengths that'll really make you special when you're looking for a job or a college major or whatever.

Last edited by Callista on 28 Feb 2009, 8:16 pm, edited 1 time in total.

I'm sorry Merle, I'm sure it's not easy in alot of ways... I guess what i was trying to say is that as an adult we dont discriminate against pple with these conditions and are more understanding of it, whereas its easier for a NT teenager to discriminate against another teen with the condition esp in a school environment etc

I could be wrong, maybe its just me being so accepting of all types of people.

Thank you Callista for you awsome advice/post will take it on board *hugs*

Adults do discriminate, but not all of them. I've met some adults who don't care one way or the other that I'm such an odd duck; and others who were so frightened that they wouldn't let me talk to their kids.

I agree that kids are often worse than adults, especially during the teen years, because being socially immature as many teens are, they will often use rougher and less subtle methods to establish superiority. Not every teen is that way; but it really only takes one really bad bully to make a kid's life a living hell.

At least if you know you are AS and it's not your fault, you don't have to blame yourself for being such an easy target. Although really, said bullies should be brought up on assault and harassment charges--and would be, if I had anything to say about it.

My case is kinda different. They told us everything but the PDD-NOS. I learned about ti when I was like 13. I felt relieved.

My own



Around 40



POSITIVE! I am NOT alone! Some OTHERS understand me! I have an explanation!



That has to be done on a case by case basis. Some problems some here have are ones I had! THEY have new technology, allowances, etc... that benefits EVERYONE, not just those with AS or a disability, etc.... THEY also have OTHER allowances and assistance to help even MORE!



I hope you are not simply being condescending. There ISN'T anything wrong with someone simply because they have AS.

And YEAH, a lot of people DO bully, etc... That is WORSE for boys.



Again, it depends on what your son is like. Frankly, if he doesn't figure out something is different, he either doesn't have AS or isn't affected much.

Thanks for your replies..

I hope i wasnt sounding condescending...i certainly dont mean to be I know that there's nothing "wrong" with pple on the spectrum...We have family members with it. I was refering in a way that others would see it who are not familiar with it, if that makes sense, because I know that there is a stigma attached to a label.

I learned from my moth, when I was 11. That is when I was diagnosed, she told me. i think ti was right away.

I was told by my speech teacher that I had all the symptoms of aspergers when I was in 8th grade. She told me I should be tested. I was tested when I was 14 and somehow, I pass and was told I didn't have it. I somehow feel like I was dishonest with the testing because even though I am not diagnosed, I do feel I have it. I am going back to be re-tested next month which will be 6 years since the first testing. I will be 100 percent honest this time around so a diagnosis is a possibility. I think a diagnosis might be somewhat of a positive thing because at least I will finally know the problem.