Do you think he is ready to be told he has autism?

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peachyperfect
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03 Sep 2012, 9:47 pm

I'm NT, but work with children with autism and Asperger's. I'm not a parent, but I'm wondering if this particular parent should tell her son or not. A high-functioning 9-year-old boy I work with currently does not know he has autism. However, within the past year he has been making comments that I believe mean that he is ready to be told that he has autism. He knows he has an aide at school, he knows we come to do therapy with him at his house, and he knows he stims. I was wondering if, after these comments, you all thought that he was ready to hear about his diagnosis:

1) He and I were reading a book together about spiders and scorpions, and there was a part that said something like "If a child is stung by this scorpion, they may begin to show repetitive movements and actions that look odd to others." He looked up at me with this I-just-had-a-lightbulb-moment look on his face, and said, "Maybe I got bit by a scorpion when I was little! Maybe THAT'S why I stim!" As it wasn't my place to tell him that he had autism, I sort of just said, "Hmmm," and left it at that, then told his mom about it later. She avoided the topic with him.

2) There is a girl at his school who has epilepsy and needs a service dog, and she came to his class to explain about the service dog and about epilepsy. As part of the presentation she explained that certain things go wrong in your brain that cause the seizures. That afternoon when he got home from school, he told his mom about the girl, and he commented, "Maybe there's something wrong with MY brain." She just said, "You don't have seizures," and then distracted him with something else.

To me, these are obvious signs that he realizes he's different and would probably appreciate being told about his autism. I think he'd ask lots of questions about it. His mom seems very nervous about telling him -- I think mostly because she is concerned that it would hurt his self-esteem. He has always had a very high self-esteem and is usually a very happy and loving kid.

So, do you think he's ready to be told, and do you think it would hurt his self-esteem if he was told about his autism?



cathylynn
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03 Sep 2012, 9:54 pm

sounds like he'd appreciate the info, but if his parents aren't ready, there's not much you can or should do.



oftenaloof
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03 Sep 2012, 9:59 pm

You are not in a position to tell a 9 year old this information. Unless you're a doctor giving an official diagnosis to the parents, you should not interfere.



glasstoria
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03 Sep 2012, 10:00 pm

It sounds like he is very observant and bright, so he might be the one who ends up telling his mom that he has autism!


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03 Sep 2012, 10:01 pm

I agree with your assessment and I think he would appreciate being told. Whether you can actually do it or not is another question.



Ca2MgFe5Si8O22OH2
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03 Sep 2012, 10:05 pm

obviously the parents get the say-so as to when he gets told, but I agree, it definitely sounds like he'd do well with the information. I don't understand why his parents wouldn't tell him already...it's not like they're telling him he only has 6 months to live or something, they're just explaining that there's a reason for all his idiosyncrasies. if he has an aide in class already it's not like he doesn't already stick out like a sore thumb, and if he were going to react negatively to something it would be from awareness of his symptoms - which he obviously already has - not from understanding the reasons for them better. believe me, it's easier to think "oh, I got overstimulated and had a typical aspie reaction to it" than to sit there wondering why everyone else is having no trouble with something that made you want to cry and hide in the closet.

if this hasn't already been established, you might ask the parents "he seems very interested in what makes him special. what should I tell him when he asks me these things?" that way you're making it known that not saying anything is an issue but also that you respect their decisions, and it comes across more as an attempt to be considerate than as a suggestion on how to raise their kid.

personally my special ed teacher friend telling me she thinks I might be on the spectrum was like, the single most helpful thing I can remember anyone saying to me in years, and has done wonders for my self esteem. that said, I grew up undiagnosed and with very deliberate training that people with issues like autism were worthy of respect and weren't in any way "bad people" for poor reactions to what they can't handle, so figuring it out as an adult may have helped me apply that non-judgmental attitude to myself better than if I'd been told as a kid. who knows.

if he's already getting help (I take it he is already diagnosed, his parents know, and the issue is only that they haven't told him?) and people around him understand, it might not be such a big deal. *shrug*

good luck. he's lucky to have someone who cares about him helping him out.



chris5000
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03 Sep 2012, 10:33 pm

no one ever explained what autism was to me. I always thought people were calling me ret*d or something. would have been nice to know why I was being singled out all the time.



PassingThrough
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03 Sep 2012, 10:42 pm

It does sound like he's ready to be told. It was precisely because of self-esteem and anxiety that my wife and I told our 7-year-old son. He was fine with it and definitely has a better handle on his situation now.

I had wanted to tell my son for the past few months, but my wife was hesitant. I brought it up during an appointment with the developmental pediatrician, and she fully supported telling him. I didn't say that my wife didn't want to tell him yet, but I'm sure the doctor could see it. She gave us some coaching, which helped to put my wife at ease. If your work with the boy puts you in touch with the school, you might mention it to a specialist. The specialist might be able to broach the subject with the boy's parents.



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03 Sep 2012, 11:00 pm

Yes, I think that he is ready to be told. He really should be told soon, before he hits puberty and becomes a small adult.



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04 Sep 2012, 8:01 am

the kid should know. i dont see why people wouldnt tell their kid they have it. its not like its a horrible thing and it would help him better understand himself. kids tend to react to these things better than adults.



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04 Sep 2012, 8:29 am

I was told when I was 15. I wish that I would have been told about my autism when I was 9 or 10. I wouldn't have rambled on about my special interests at the age of 10, and I'd actually feel bonds between both of my parents and myself.


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lotrjw
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04 Sep 2012, 8:46 am

I got told when I was 10/11 I found it very helpful to know what was different about me.



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04 Sep 2012, 9:13 am

Maybe you need to support/find support for the mother to help her tell her son? Sounds like she's avoiding doing so.



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04 Sep 2012, 9:44 am

He sounds ready to be told, although I don't know why parents would wait to tell their child. If it's made to be a "secret" or a big deal then I would imagine that would harm a child's self esteem more because they might be ashamed. I would have loved to have had that information growing up, I just ended up thinking that I was defective in my own unique way and that it was somehow my fault. I ended up getting paranoid in my teenage years, thinking that there must be something wrong with me that must be obvious to other people and maybe they did know what was wrong with me and just weren't telling me. That wasn't the case at the time, nobody thought that it might be AS, they just thought I had behavioural or mental health problems. I know I had to reassure myself, though, that if there was something terribly wrong with me that everyone knew about but me that I probably wouldn't have been allowed to get a driver's license, and since I had my driver's license it meant that I couldn't be completely crazy or "ret*d". It was a horribly confusing time that I don't wish on anyone.


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04 Sep 2012, 10:19 am

I agree that you shouldn't interfere unless absolutely necessary, but I absolutely think the parents should tell him.

I wasn't diagnosed as a child, so of course, nobody told me. However, while I didn't know why, I knew that I was different in some way. Doesn't sound like it's happened yet with this child, but I know that over time, I started to blame myself more and more for my struggles - I know I would have appreciated knowing why I was different, and getting the message that it's not my fault that I am the way I am. It was probably when I was about 9 or 10 years old that I first started to blame myself - a downward spiral that led to me isolating myself more and more as I moved into my teenage years as my self-esteem sunk lower and lower.

So far, he seems to be doing alright. However, that could change. He understands he's different already, and he's clearly trying to figure out why he's different. The danger is, if he can't find an outside factor to explain it, it may only be a matter of time before he starts blaming himself and that high self-esteem you see starts to fade.



kx250rider
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04 Sep 2012, 10:53 am

cathylynn wrote:
sounds like he'd appreciate the info, but if his parents aren't ready, there's not much you can or should do.


I agree here... The parents are NOT helping him, nor are they helping themselves or anyone, by pretending (1) that their son is NT, and (2) that there is something "wrong" with autism. My wife's nephew and his wife, have a mid-functioning autistic son. They won't admit it to themselves (or anyone in the family) that the boy has autism. It's so blatantly obvious that the whole rest of the family sees it like neon sign. But despite the open-mindedness of all of us, the poor kid is being forced to be NT, and is failing miserably. Hard to watch! His mother's family is one of those "perfect" families (LOL), in which everyone is a perfect A student, has perfect manners, attends perfect private schools, and marries a perfect mate, etc etc etc. Balderdash! But there's nothing we can do about it, as anyone in the family who has tried, simply gets shut out.

I would suggest maybe to offer the parents some reading materials on high functioning autism, and also it might help to drop a name or two; Bill Gates, and (allegedly) Thomas Edison, for instance. In other words, autism can = big success, and not necessarily big failure. Sadly, failure is the future if denial is the way.

Charles