14 year old son with ASD, how do i tell him he has Autism?

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Emsjane
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09 Nov 2010, 11:23 am

Hi,

This is my first post on this site which I was very glad to have found!!

I have a 14 year old son with Autism. He has quite a lot of learning difficulties and goes to a special school.
Socially he is quite able and in the last few months has started to do a lot more things independently, ie. Walking to school, about
1 mile, walking the dog to the park, going down to our corner shop to buy sweets.

I had a discussion with him a couple of months ago about him having Learning Difficulties and about him being at a special school
as his teacher contacted me to say he was standing up in class and saying to some of the other children, 'you might have
problems, but i don't'! !! So we talked about his learning and his school, he didn't like to hear this at all and his reply was
simply to say that he only has a little bit of difficulty and that he only needed a little bit of help every now and then.

So basically he doesn't want to hear about any of his problems, lets face it, who would. However, he is now getting to the age
where he is going to have to know about his Autism sooner or later, at the lastest by the time he leaves school at 16 and
goes onto college as he will be with NT children for the first time in his life!

I am struggling with this so much and would really appreciate any advice on how exactly to approach him with the news that
he also has Autism and getting him to accept this and what that is going to mean to him and his future!! !!



Asp-Z
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09 Nov 2010, 11:24 am

Don't talk about problems, tell him his brain works differently from most peoples'.



Countess
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09 Nov 2010, 11:29 am

Asp-Z wrote:
Don't talk about problems, tell him his brain works differently from most peoples'.


I agree with this and you might reconsider even having such a discussion, OR pointing out to him that others are different from him is completely inappropriate.

I don't know that I would make any effort to tell him he is different right now. It sounds like he's having a little personal crisis. Pushing that he really "has a problem" or disorder or whatever it may be might push him emotionally over the edge.

Teens (in general) are contending with a lot of different physical and emotional changes, and some have a more difficult time coping than others.



Asp-Z
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09 Nov 2010, 11:31 am

Countess wrote:
Asp-Z wrote:
Don't talk about problems, tell him his brain works differently from most peoples'.


I agree with this and you might reconsider even having such a discussion, OR pointing out to him that others are different from him is completely inappropriate.

I don't know that I would make any effort to tell him he is different right now. It sounds like he's having a little personal crisis. Pushing that he really "has a problem" or disorder or whatever it may be might push him emotionally over the edge.

Teens (in general) are contending with a lot of different physical and emotional changes, and some have a more difficult time coping than others.


I'd say he should certainly know he has Asperger's, because not knowing makes things harder in the long run, but it's important to be careful what you say when you're talking about it.



theWanderer
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09 Nov 2010, 1:43 pm

As someone who grew up before Asperger's was even a diagnosis, and who just figured out the explanation for so many things in my life this September:

Yes, he does need to know. It may be that this is not quite the right moment to confront him with it - and if he refuses to listen, it would neither be helpful nor appropriate to force the issue - but having the knowledge is important. That way, if he runs into trouble, he at least has some idea where to look for understanding.

However, I do think that how you present this is very important. It is not a disorder, nor a problem (except in the sense that NTs make it a problem - a hundred years ago, having black skin was "a problem", but not because there was anything inherently wrong with that, but merely because society chose to make it a problem). It is a difference in the way our minds work.

I've done a lot of thinking about this, and the way I see it, NT thinking has certain strengths and certain weaknesses. AS thinking has other strengths and other weaknesses. Ideally, society would help us all to get along, so we could pair those strengths and help each other overcome the weaknesses. (Everyone has weaknesses. No one always gets everything in life right.) So far, that hasn't happened. But making him feel there is anything "wrong" with him would be cruel and misleading.

But he does need to understand that he isn't just like everyone else. He will have a hard time being taken seriously - even by his doctors - and he will be persecuted by some, and he needs to be aware of this. The ones who refuse to take him seriously, the ones who persecute him, they are the ones with problems - but he does need to understand what may happen.

Also, something you didn't bring up but need to consider. I seemed to be doing okay until I hit college, then I basically melted down when I had to confront "the real world". I thought that was just me, but I've seen a lot of posts on here that suggest many others with AS find this particular life transition especially difficult to navigate. I think there are a lot of reasons for this, but if it does happen, it is not his fault. If you hope to avoid it happening, it will take a lot of thought and planning on your part - and he certainly will need to know what to expect from an NT world which really will treat him as if he was an alien who came from the wrong planet.


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momsparky
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09 Nov 2010, 1:51 pm

I had the exact same situation with my 10yo, who is still very afraid that he's crazy although he is starting to accept that he's different and that is OK. (I know there's a thread around here somewhere, but I can't seem to find it.)

At any rate, we were really helped by the book "All Cats have Asperger Syndrome" even though it is geared towards much younger children. It's a matter-of-fact presentation of the most general differences and pictures of cute kitties. We "left" it somewhere where he would find it, and he read it interestedly for a while, and then suddenly came to the realization that the book was about him - but it was much easier on him than some kind of clinical DSMIV sort of a thing.



Countess
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09 Nov 2010, 1:55 pm

Asp-Z wrote:
Countess wrote:
Asp-Z wrote:
Don't talk about problems, tell him his brain works differently from most peoples'.


I agree with this and you might reconsider even having such a discussion, OR pointing out to him that others are different from him is completely inappropriate.

I don't know that I would make any effort to tell him he is different right now. It sounds like he's having a little personal crisis. Pushing that he really "has a problem" or disorder or whatever it may be might push him emotionally over the edge.

Teens (in general) are contending with a lot of different physical and emotional changes, and some have a more difficult time coping than others.


I'd say he should certainly know he has Asperger's, because not knowing makes things harder in the long run, but it's important to be careful what you say when you're talking about it.


Oh dear - I totally agree that it's important that he's aware at some point! I just am not sure how able he will be to receive the message right now given how he's behaving. That was all I meant.



bjtao
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09 Nov 2010, 2:07 pm

I was nervous about telling my son of his diagnosis as well. I tried telling him in my own words and I got zero reaction from him. He didn't understand and didn't care to understand. Against my own judgement, I purchased the book that many people recommend called "All Cats Have Aspergers". My son doesn't have Aspergers, he has PDD-NOS, quite severe. I gave him the book and told him he does not have Aspergers, but something called PDD-NOS which is similar. He cried and said "Are you saying I have a cat disease???" and got pretty hysterical. I said no, it is a metaphor (he knows what that is). He calmed down. I asked him to read it out loud and put a check on the pages that he can relate to. He related to a lot of them. After reading, he felt good and was open to convesation about the challenges he faces with this disorder.

It has been immensly helpful to do things like this - tell him about the disorder, then offer to have him meet other children with it. I told him about his sensory processing disorder and took him to a sensory processing disorder event. This didn't go as well as I had hoped because all the kids there were very very young. I also explained to him that his friend has Aspergers, which is similar to his disorder, and they are in a socialization group for him.

In my experience with my child, it has been helpful to introduce him to it as 'hey, you are not alone!'. This way he seems to be open to understanding it better.



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09 Nov 2010, 9:25 pm

theWanderer wrote:

I've done a lot of thinking about this, and the way I see it, NT thinking has certain strengths and certain weaknesses. AS thinking has other strengths and other weaknesses. Ideally, society would help us all to get along, so we could pair those strengths and help each other overcome the weaknesses. (Everyone has weaknesses. No one always gets everything in life right.) So far, that hasn't happened. But making him feel there is anything "wrong" with him would be cruel and misleading.

[/b].


I totally believe this and I thank you for writing it, Wanderer.
I have AS and my husband is pretty far on the "NT spectrum" :)
In relation to telling my son about his diagnosis, this is what worked for me. It was a slightly different situation than yours as he had only been diagnosed at the age of 14 and he was very aware that he was different, but he did try hard to fit in. I had already arranged an appointment with our psychologist so he could review the results of the assessment and diagnosis. I told the psychologist many of my son's strengths and asked if he would emphasize those strengths to him when he revealed the diagnosis.
Just prior to the appointment with the psychologist, my son and I were driving in the car. He told me that some people had been giving him a hard time about his headphones (he always had them either around his neck or over his ears). I turned and asked him why he wore them. He told me "Mom, I could hear a pin drop, my ears are so sensitive. I have to block out some of the sound". I said, "that makes sense and goes along with your diagnosis". He asked me what his diagnosis was and I told him that he was like me, I had AS, he was PDD-NOS. I explained PDD-NOS and why he didn't also receive as diagnosis of AS. He was quite accepting and then confided in me that sometimes he wondered if he was OCD. Due to this, the psychologist also had us fill out questionnaires for OCD, but from both his and my response he was sub-clinical.
When we met for the appointment, the psychologist emphasized his intelligence to him and the things he tested well on, explained he had some areas where he would be more successful with the accommodations he had recommended in the assessment. I heard them laughing a few times and my son came out of the appointment quite happy, not upset at all.

My recommendation would be to look for opportunities like I had, where your son might mention something that he might be struggling with; let him know how it might relate to his diagnosis. Wait for him to ask what his diagnosis is and then be very matter of fact. Emphasize his strengths and always let him know what you appreciate about him; be specific.
Best of luck.



Last edited by websister on 12 Nov 2010, 7:22 pm, edited 1 time in total.

vikingwoman
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10 Nov 2010, 10:52 pm

I was relieved when my son had his diagnosis - I thought I was a terrible parent. We told our son over a period and wonder of wonders, a new kid moved in our town who had Aspergers. My son is a very gentle artistic soul who loves history, roller coaster designs (and riding them!), Pop Art and non-fiction books. This other kid is more athletic, very Alpha. They naturally took to each other and that helped me tell my son a bit more about his "wiring". I told him that we are all wired differently and that his disorder is on the autistic spectrum. There was another kid who PDD-NOS and another who was non verbal autistic. When I told my son that he was autistic, he really didn't want to be like that other kid - the one who did not speak. But I told him that he was more high functioning.

Now when he has out of control meldowns, sensory needs, or OCD or impulse issues, we say "this is your Asperger's....You have a choice now - you have a plan A that didn't work out, what is your plan B - do you have a plan C?"

Once he gets a grip he can recover...it used to take weeks for him to recover from a meltdown episode and he would be out of it for weeks.

Now I am urging him to advocate for himself. Speak up. He has a wicked bad stammer - sentences rather than words so he has a tough time getting thoughts organized quickly enough express himself.



DW_a_mom
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11 Nov 2010, 3:15 am

I told my son at the same time he got his diagnosis, when he was 7, so trying to transfer that conversation to 7 years later is a little difficult for me; I think it was easier for my son to grow up with AS as a part of his identity, essentially. At the time we fit it into what he already was observing (that he was different), and perhaps that is still the starting point, to ask your son how he sees himself and how he sees himself in comparison to others. You then find the pieces in that image that are best explained by AS, and tell him there is a reason for the difference he sees, and that the difference has a name. You explain that the condition is responsible for some of his coolest traits, as well as some of his difficulties, and can even list of some of the famous people believed to be AS. I have to say, to my son when he was 7, this whole conversation was such a huge relief. After all, young imaginations can give the differences kids see far worse explanations; my son had seriously worried he might be a little crazy, it was so obvious to him that his brain didn't sort things out the way other kid's brains did.


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11 Nov 2010, 4:16 am

Hello

As this is a fairly common topic that comes up, I have already written a response. But rather then copying the section into this post, I figured it would be easier if I just give you a link. Open up:

http://asdstuff.com/Strange%20Kid.pdf

And go to page 169 in the PDF, (page 166 in the book). That should help you out a little bit.


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SamRen
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11 Nov 2010, 5:35 am

It's a bit different getting a diagnosis when you're an adult and have already adjusted to life as best you can. You see the diagnosis and it clicks, "oh! well, that explains it. Interesting."

For a kid who is still forming their identity, they might not feel relieved. Their world is a lot smaller because they've experienced less. Hell, I was 25 when I was diagnosed with attention-deficit hypo-activity. My mother gave me one of the leading books about women with ADD, and it made me unspeakably depressed. It seemed like all the stuff I struggled with wasn't something I could fix--it was a life sentence of being disorganized, screwing things up, and trying to be cheerful about being undignified, weird, and uncool.

You may just have to accept that no matter how you break it to your kid, he'll have a hard time with that. That's not a reflection on you or your parenting--just that's its a hard thing with no easy path. I think it might help to focus on Autism being the brain working differently, not less. Given how he feels, though, I would expect something like grief once he accepts it. You need space to grieve the loss of that piece of self-identity before you can form a new one. His diagnosis is huge to you--but it's going to be everything to him for awhile.

Sorry. I really don't envy you that talk. Good luck.



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11 Nov 2010, 12:20 pm

Emsjane wrote:
So basically he doesn't want to hear about any of his problems, lets face it, who would. However, he is now getting to the age
where he is going to have to know about his Autism sooner or later, at the lastest by the time he leaves school at 16 and
goes onto college as he will be with NT children for the first time in his life!



why would he be going to college at 16? that doesn't make sense did he skip a grade or something?



Emsjane
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19 Nov 2010, 3:36 am

Hi Everyone,

Thank you so much for all your helpful comments.

Firstly, can i just say, the only reason i used the word 'problem' was because he used that word at school towards the other kids.
However, having Autism, he is going to find life hard in the NT world that he is going to have to live in!! !! !! !!

The reason he is leaving school at 16 and going onto college is because we are from the UK.

Your comments have confirmed to me that he does need to know as soon as i feel it is right. I will definitely look into getting that
book about the cats, thanks for that.

I will be extremely careful how i handle telling him. He has exceeded all my expectations and
is doing really well.

I hope that continues when he goes to college and I will be there to help him through



theWanderer
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19 Nov 2010, 1:00 pm

Emsjane wrote:
He has exceeded all my expectations and
is doing really well.

I hope that continues when he goes to college and I will be there to help him through


I'm glad he's doing well, and I hope he continues to do so. But if you are going to help him through college, you need to understand the issues he will be facing. Yes, I think many NT kids face these, too - but not to the same extent.

A: He will be leaving behind familiar surroundings and familiar routines. Desperate as I was to leave home (I was overprotected to a ridiculous degree), the effect of this on me was about as drastic and traumatic as (I suspect) it would be for most NTs to come home one evening and discover nothing but a crater due to a gas explosion, and have to start all over.

B: He will be leaving behind everyone who knows him and is used to him. He will have to make his way in a crowd of strange NTs who are not used to his quirks. Even the best intentioned are likely to make life hell on him. As for the bullies... :evil: Speaking for myself, trying to get used to any group of strange NTs, even now, is demanding and stressful, and seldom works out that well. I find interacting with NTs about as baffling as the characters in video games, where you just have to figure out what you're supposed to do before the game will let you move forward. Actually, those games are easier: at least the cheat sheets make sense and I can follow those instructions easily. The "cheat sheets" for those of us with AS to deal with NTs either don't make sense to me, or tell me to do things I find difficult or impossible.

C: There will be a flood of sensory issues he may not be prepared for. Strange sounds, smells, tastes, whatever tends to bother him. These are more real, and more important, than you probably imagine. An illustration of that from my own life. I just figured out this last September that AS actually explained all the weird things in my own life, including sensory issues. A few weeks after that, an eye doctor finally identified* exactly what has been wrong with my eyes since birth. It is a rare condition called ocular albinism - and among other things, it means my eyes are very light sensitive. Now, that wasn't news to me. Bright lights have always bothered me. But, among all the other, worse, sensory issues I was expected to "just get over", it literally got buried in the 'background noise'. Think about that for a minute: a verified physical condition which causes 'normal' bright lights (headlights of every passing car, for example) to feel to me like looking into very intense lights (essentially the feeling of a phantom knife blade thrust into your eyeball - if you can, look into a light bright enough to make you feel that way, and you'll know what I feel) - and I never particularly noticed it because it was somewhere in the mid-range of annoying sensory issues.

D: The work gets harder. Many NTs struggle with this. With all the other struggles added in, this becomes a much bigger issue.

E: Suddenly, he's on his own. He is the one who has to keep track of everything, organise everything, plan his time, get his work done. Again, NTs struggle with this one, but without all the extra burden piled on.

In my opinion, the only way an AS kid is going to make it through college without a meltdown is if they're prepared to face all these issues, with at least some strategies worked out in advance. True, I'm not a "professional" - but I have one huge advantage over them. They're observing us from the outside, and relying on that information. I know what it's like in here. And some of the "strategies" will not work for us. To this day, I can't look at the person I'm talking with if the discussion gets serious enough. And, if you force me to "look them in the eyes", that will guarantee I'm not paying attention. Even when I am able to do it, it may degrade the quality of my attention. So what you and he need to work out together are strategies that work for him the way he is, not ones that make the NT world happy. Although, yes, if you annoy them too much, that leads to issues of its own. That does need to be considered - but, in the end, every useful strategy must be one he can work with and live with.

*Yes, in spite of endless visits to countless eye doctors throughout my childhood, almost all of whom gave me a hard time for squinting and dodging their bright lights - including a specialist respected throughout the US (who did at least get it partly right), it took 49 years (the visits to eye doctors started when I was 2) for one of these "expert professionals" to finally identify the underlying condition.


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