Telling My Son About His Diagnosis

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YippySkippy
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09 May 2015, 10:33 am

The best book I've found is "The Survival Guide for Kids with Autism Spectrum Disorders (and Their Parents)" by Elizabeth Verdick and Elizabeth Reeve, M.D. It's upbeat, colorful, and written for kids roughly 7 to 12 years old. I read it to DS one chapter at a time. He really paid attention and even asked me to reread certain paragraphs, which is pretty amazing for him, as he usually gets distracted pretty quickly.



AspieUtah
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09 May 2015, 10:34 am

I amn't a parent, and I know how seemingly superficial it can be for adults to consider famous people who were diagnosed or are believed to have had Autism Spectrum Disorder. But, as a former child myself (and a self-determined weekend child), I would have LOVED knowing about the people with ASD in life and history who I admired. Such knowledge would have made me feel included, full and in great company. If they could succeed without humiliation, maybe I could, too!

Here are some good lists (you could pick out a few individuals you recognize among those your son admires):

https://en.wikipedia.org/wiki/List_of_p ... _disorders

http://www.disabled-world.com/artman/pu ... 2086.shtml

http://www.asperger-syndrome.me.uk/people.htm

http://incorrectpleasures.blogspot.com/ ... rtant.html


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YippySkippy
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09 May 2015, 10:51 am

We watched "Ghostbusters" as a family. About halfway through, I pointed to Dan Aykroyd's character and said, "You see that guy, there? He has Asperger's. And he wrote this movie."
DS was blown away. So was my husband, by the way, who is not as big a nerd as me and doesn't research these things. :lol:



AspieUtah
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09 May 2015, 11:01 am

YippySkippy wrote:
We watched "Ghostbusters" as a family. About halfway through, I pointed to Dan Aykroyd's character and said, "You see that guy, there? He has Asperger's. And he wrote this movie."
DS was blown away. So was my husband, by the way, who is not as big a nerd as me and doesn't research these things. :lol:

Hehe! You did good.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


Meistersinger
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09 May 2015, 11:10 am

In a way, not being diagnosed until I was in my mid-50's was a blessing. Mom and Dad had no use for ANY mental health professional, let alone educators. Both of them would have said "BULLSH*T!! !! !! !!" To any one that would have even mentioned autism in association with me. Their idea of discipline was you're guilty, even if proven innocent. (I have 3 other brothers, and if one of us got out of line, all of us got the punishment at the same time.)


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League_Girl
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14 May 2015, 5:10 pm

I was diagnosed in 6th grade and I don't remember being told about it right away but I was told about it that same year. My mom explained I had a different learning style and different perspectives and my brain worked differently and I needed more information when I am told things. But that made me feel broken and alien and a failure. At that time I just wanted to be normal so telling me what I had didn't help because it felt like it was saying I will never be normal but luckily I did keep trying because I thought I could just get rid of it. I think if I had known sooner before I even cared I was different, I may have used it as an excuse because I would have thought I should have special privileges just because I saw other special needs kids getting them and think I shouldn't have to follow all the rules without a consequence or even try to control myself. I always found short cuts and this would have been one of them because I wouldn't have understood and I would have been confused and I am sure it would have been very hard for my parents to get me to understand which is probably why she never really told me I had a disability or had something but they don't know what it is yet. I can remember going to a psychiatrist in 6th grade and my mom told me it was just to help me get better and not be sick anymore and he was helping me. She didn't tell me what I was really there for. I am glad she didn't tell me or it would have made me feel worse and make me resent going there and I would have hated going there more.


I say it depends on the child, how they feel about themselves, about being normal, and so and how they think. For me it would the best option to not tell me and when my mom did, I felt bad about myself even though she was not negative about it. I just didn't like hearing how different I was so telling me didn't make me feel better and magically make me get over it and then like being different all of a sudden.


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PlainsAspie
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18 May 2015, 12:42 pm

Here's a really good guide to having the talk. http://realsocialskills.org/post/117695 ... talk-about



michael517
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18 May 2015, 12:54 pm

Not sure what to say, but can offer a virtual hug (for him, not you. Unless you really want one.).



Noun
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18 May 2015, 1:21 pm

Definitely tell him! I don't understand why parents would not tell their children immediately if they were aware of it.

I wish I had known when I was younger, but my parents hid my diagnosis from me for several years. Instead I spent the majority of my life depressed, unable to understand why people reacted the way they did to me. It was so hard for me to communicate with others, I felt like I may as well have been speaking another language. I was bullied and made fun of, and felt like I was inferior and stupid for not being able to carry on a conversation normally like all the other kids.

I so rarely felt understood that despite wanting friends, I gave up on socializing and became severely withdrawn. I was a complete shut-in who rarely left the house, or even my room. I hardly spoke at all, even to family. Because it was THAT frustrating for me to never feel on the same page as anyone else. I had so many emotions I wanted to express, but not the slightest idea how to do so, no idea how to even begin to word them. I had a lot of things I wanted to say but just simply gave up on talking to people because nobody seemed to understand me.

When I found out about my diagnosis, I'll admit I was angry I was kept from it, but in the end I was actually very happy to have this information. It explained SO MUCH! So much made sense, and I found comfort in the fact I was not alone in feeling this way. Now I feel much happier and more comfortable with myself.

My friend actually told me that if her child was autistic, she would not tell him because he might use it as a crutch. An excuse for bad behavior. While that was not the reason my parents kept it from me, being on the receiving end and knowing how frustrating and upsetting that is, I just have to hope that people who say things like that don't realize how cruel that would be.

Could he use it as a crutch? An excuse? Quite possibly, but then raise your child to not be the type of kid that finds excuses! Parent him well, and he won't do that! That is an incredibly selfish reason to withhold that type of information that directly concerns him. If you don't want him to use it as an excuse, then teach him better. And be respectful of things he can't do or struggles with, don't assume it's an excuse right off the bat, either.

And you know, if I had a kid with autism, I'd rather he use it as an excuse than go through what I went through if it had to be one or the other.



carpenter_bee
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18 May 2015, 3:17 pm

I want to support what Noun said above ^^^ regarding using the diagnosis as a crutch. My son has certainly tried to use anything & everything he can to avoid doing stuff he doesn't want to do, including the information that he is on the spectrum and that in some cases it can be (or can be viewed as) a disability, especially in environments where conformity is very expected (like at school). As soon as he knew about "disability" and what that means, and what it means for HIM, you can be SURE he tried to use that to get out of stuff. The thing is, very few people around him in these cases (parents, aide, other school staff) are stupid enough to fall for that. That's not to say that there are times when it's tough to tease out how much he is really struggling with something vs. simply not WANTING to do it, but it's pretty obvious when he's trying to "outsmart" adults by using Asperger's or "disability" as the reason why he won't even TRY to do something, or won't try to work through some frustration that he *is* capable of working through without too much effort. It looks a lot different from when he is truly frustrated or shut down.

Bottom line, in my opinion--- knowing won't make a child any more likely to use it as a crutch, unless the adults around the child WANT it to be. I mean, it'd be sort of like having a girl complain that she can't play soccer or do math "because she's a girl" and the parents agreeing with that. I mean, you COULD, but why would you? What it does (if the kid tries to use it), is open a conversation about why they don't WANT to do X, Y, or Z, and then you can figure out whether they WANT to but are afraid, or if they DON'T want to do it (even if they could), and, if it's the latter, it becomes a conversation either about "okay you don't have to do that," or "sometimes we have to do stuff we don't feel like doing."



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18 May 2015, 6:39 pm

I would definitely tell him! I think using it as a crutch is a completely different thing (something everyone needs to be aware of).

I suppose the issue is a lot like parenting. Your young child is afraid at night. On one hand, you understand and empathize with the fear and offer comfort. On the other hand, you still work for your child's independence and don't just let him stay up watching tv because he's afraid. Knowing a diagnosis can be a step towards *understanding* but it doesn't have to mean giving in all the time to the desires of the child. And your child should know this too.

But, he has a lot to gain from understanding why he's different and crafting a more accurate identity built around this new understanding.

I tell my son that Aspergers helps himself and others understand *why* he's having a hard time...it doesn't get him out of following the rules. Knowing about the challenges in more detail can also help in preventing problems, which is intensely useful.

I told my son as soon as I found out. And showed him an Arthur episode to help brief him on what it was. (I was diagnosed at the same time, so it was something of a little private club he joined...)


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kraftiekortie
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18 May 2015, 6:45 pm

Glad to see you back, Screen Name.

I missed you.



Sweetleaf
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18 May 2015, 7:56 pm

I never really get that crutch phrase...I mean how do people figure something disabling is a 'crutch', I realize it means people don't want you to use your condition as an 'excuse'....But then again neurological and mental conditions do effect behavior and do have disabling symptoms. It is a good thing to see it as a valid explanation for the things it does in fact explain to some degree...doesn't mean your kid should never try to improve in any areas he struggles but it also has to be acknowledged autism does come with limitations depending on the severity there are some things that may just never click, things he may have to work around ect. So it is good to have a fair balance you don't want them beating themself up over always failing by having way to high of standards in the first place, but you also don't want them to feel its pointless to even put effort into anything.

Of course understanding things may work differently for other people would be helpful...but it might also be helpful for him to know there are limitations and its not always him screwing up or 'doing something wrong' when things don't work out...I know when I was growing up after a time I started thinking no one liked me because I was just some kind of flaw of a person deserving of ostracism...perhaps had i seen it from the lenses of 'I have this condition and sometimes people aren't very kind to people who are different' so then I would have seen their behavior as on them...rather than blaming myself for things I couldn't have possible had control over.


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19 May 2015, 1:00 pm

I started to use mine as an excuse in high school because I thought I should have special rules and I quit trying to control myself so I would have out of control emotions and I thought I didn't need to be responsible and everything should go my way. I was confused, I saw how autistic kids got their way just from reading online and I wanted that too and I saw how Frankie got his way with using violence so I tried that too so I would have an easier life thinking ODD was a choice. It was hard for my parents and my brothers. Also I had a school counselor who would always tell me this happened or that I did this because I have AS or tell me I will never learn something because of it instead of telling me how to deal with things or trying to teach me. Like I have said before, I have always found short cuts.


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