Telling your child he has aspergers... or sids... or??

[BMW]

Last year I explained to my son about sensory integration disorder. I explained about how his brain is wired and about his senses and gave him the "why" as to some of his behaviors and "feelings". He was a little upset about it. He was fine "just being different". But, to know that his difference had a "name" (label) made him feel worse for a while.

 

He also has aspergers. I haven't told him about that. He has a lifelong autistic history, which improved greatly over time. But, I've never explained anything to him. I thought about watching the movie Temple Grandin with him because I know he would relate to her a lot... When I watched it so many things made sense about my son. Maybe we could watch it and I could just let him talk about it... if he wants to on his own...?

 

Is it important to tell these kids about their "disorder"? Is there anything saying what age is better to share that information? My son will turn 12 this summer.

 

Thanks for your input!

[BMW]

Please? I am sure that there are several of you who have to deal with this... what are your thoughts?

 

Thanks.

[Laurie]

 

Is it important to tell these kids about their "disorder"? Is there anything saying what age is better to share that information? My son will turn 12 this summer.

 

!

I think it's very important to be honest and provide information that could be helpful for them. My dc both wear glasses. We didn't hide their vision problems from them either, and they both got glasses to help them funtion better. To me, autism is also something that should be dealt with in a matter-of-fact way...here's what it is, here's what we can do about it, and it's not some big family secret or something to be ashamed of.

 

A book I really like is Asperger Syndrome, the Universe and Everything by Kenneth Hall. He has AS and wrote the book when he was 10.

 

:grouphug:

[Virg]

My step-children have FAS and we told them not that long ago. At first they were upset esp. with their mother (whom they do not see) but in the long run it has REALLY relieved their frustration. We do not allow them to use it as an excuse to not try, but they were struggling so much understanding abstract math and comprehension questions and now they know why. They no longer see themselves as "stupid" or "dumb" and are able to understand that these things will be hard for them.

 

It has also helped in areas like impulse control. They are starting to understand that their first judgement will usually not be correct and that seeking advice or stopping before deciding anything is a good stop-gap. Quick or emotional judgments is something their brain does not do well. We try to encourage all four children to learn to make their own accommodations (with our support) for their difficulties since as adults they will have to without us. (One twin has anxiety, reading and speech disorders so everyone has things to deal with.)

 

I can't say it is the right choice for everyone but it has worked for us. We reaffirm that everyone struggles in different areas and these things are their areas, here is the reason but we can learn to deal with it.

[Chocolate Rose]

I don't have any answers for you, but did you watch "Parenthood" this week? That was one of the main themes of this week's episode.

Edited March 3, 2011 by Stacy in WA

[thescrappyhomeschooler]

I did tell my 8 yr. old that he has Asperger's Syndrome, and explained it to him a little bit, so that he would understand why he had to take all these tests and his brother did not.

[Hwin]

My aspie is a preschooler so we haven't had a sit-down with him. Our plan is to be open about it and let him ask anything he wants. He has a little book called "All Cats Have Asperger Syndrome" but he is more interested in the cat pictures than anything else.

 

You know, Monday's episode of Parenthood dealt with that exact subject and it's probably on hulu. They rephrased a lot of the negative clinical talk with positive descriptions.

[Chocolate Rose]

You know, Monday's episode of Parenthood dealt with that exact subject and it's probably on hulu. They rephrased a lot of the negative clinical talk with positive descriptions.

Yes, Parenthood is up on Hulu. I watched it on Hulu last night (I can't stay awake to watch it when it airs on Tuesdays so I usually watch it on Hulu).

[canadianmomtofour]

I am in your situation right now. I have never told ds that he has autism because we are still working on an official diagnosis, and it's just plain hard to find the words. He is self-aware enough to notice he is different from his siblings and his peers, so when we tell him I think it might actually be a relief for him. It's been suggested to me to equate it with his diabetes. His brain works differently than other people; just like his pancreas. You could do the same sort of thing; equating it with sensory integration disorder? Just an idea.

[ktgrok]

I told my 11 year old ds just recently. He is a bit stressed out, as he is at the age of wanting to be "normal". But I told him that everyone has certain strengths and weaknesses, and sometimes they like to put a label on the various categories. He's really good at learning important things, but doesn't like to look people in the eye, or talk to strangers. There are lots of people that feel the same way, and the name for people that think like him is Asperger's. I also made sure to tell him about all the famous people that have it.

[Night Elf]

My son was with us when he was diagnosed. I can't speak for anyone else but I wouldn't dream of not letting my son know. It explains so much about things that he goes through. Knowledge is power, IMHO. He was 9 when diagnosed but he didn't start researching more about it on his own until about age 13.

 

I asked him how he feels about having Aspergers: Jeffrey said he would have been upset if he found out we knew he had a diagnosis and didn't let him know. He likes that he understands why he is different from other kids. He doesn't feel bad because he has Aspergers. He said if your son does get upset, you should help him understand that it isn't a problem or something wrong with him, it's just something that makes him different in a special way.

[newbie]

Talking to your children is key in this situation. To be able to tell them what makes them different, so they have an understanding and the most important thing is being a self advocate.

 

Knowing what your disability is so they can communicate it and know what accomodations they need for the rest of their lives.

[BMW]

It's not that I have kept it from him secretly. He knows he is different in many different ways. He was diagnosed at 6. I just haven't put a label on it. We live with his uniqueness and differences. He has never really been upset about being different. When he rocks in the car. When he paces. How he doesn't really engage in play with others, but, circles around perimeters. How he rocks on the couch. It's all been just part of life and he has always been fairly happy.

 

But, since I have not used the aspergers word with him... I am now in that place of wanting to explain it and wish maybe I had used the word all along... That's why I am asking for advice.

 

I'll check out the Parenthood show.

 

I think, too, part of not using the aspergers word and just living with him happily has kept me from that twinge of pain... Part of me wants to just believe that no matter who he is, he is just fine and putting the word on it acknowledges that there is a "problem". Anyone btdt? Anyone relate? For example, I haven't felt emotional pain about him having aspergers for several years now... all of a sudden I need to talk to him about it and explain some things and it hurts all over again...

[sparrow]

We've always tried to be as open as possible with our son. We've had discussions about his brain being wired differently and have tossed in the word "Asperger's", despite the fact that his diagnosis is not official. He is officially diagnosed with "PDD-NOS (may later be diagnosed with Asperger's)".

 

I thought he was understanding all this until we watched the Science Channel's Ingenious Minds. John Elder Robison was on and they were talking about how he was wired so visual/spatial stuff was pictures in his brain, blah, blah and our son says, "I do that". We responded to that with, "yeah, it's cool isn't it?" They started talking about some of the more negative social aspects of Asperger's and ds pops up with, "Wow, I'm glad I don't have Asperger's." My husband and I quickly exchanged looks, paused the dvr, and tried to have a chat....which I'm sure you all know doesn't go over well unless your kid decides he wants to chat :glare:. We tried to explain that he *could* have AS, but a very mild case. No response. It's so hard to tell when he's listening/absorbing or when he's just thinking about one of his interests.

 

The one thing he seems to take away from our conversations is that his brain is wired differently and that seems to give him some peace regarding why he doesn't understand the way people act sometimes. Or why he can't understand jokes :D.

[Alicia64]

I'm in an opposite situation. I have 7 year old boys and have started to prepare them for the fact that dh has Aspergers.

 

He's on the relatively mild end, but there's no doubt that he has it. For now (because they're young), I call it "dad's computer brain." And it is.

 

People w/ Asperger's generally are extremely intelligent, as I'm sure you know.

 

I've read and heard that parents w/ AS can deal w/ teens in ways that aren't so great, so I figure that if I start prepping the kids now about the situation, I'll be able to help them through what I'm sure they'll notice about dh when they're 12, 13, 14 etc.

 

I'd recommend reframing AS -- and putting it in positive terms.

 

That are drawbacks to having AS -- and being a spouse of someone w/ AS -- but there are many positives too. These men are great providers, very loyal, great breadwinners. Of course I'm talking in generalities, but I've read all of this in books and it matches my own dh.

 

Reframe it as a positive because parts of it really are strengths (think Bill Gates, Edison, probably Henry Ford -- just guessing, but the engine was certainly his "special interest).

 

If you want book recs let me know.

 

Take care,

 

Alley

[Night Elf]

I think, too, part of not using the aspergers word and just living with him happily has kept me from that twinge of pain... Part of me wants to just believe that no matter who he is, he is just fine and putting the word on it acknowledges that there is a "problem". Anyone btdt? Anyone relate?

 

Yes, and it's hard to admit that aloud because it feels like I don't think he's good enough, which of course isn't true. But there is that element of hurt and wondering why my son has to be this way. He's 14 and starting to think about girls. He wants a girlfriend. He also wants guy friends and I've suggested that he focus on that first. We joined an Aspergers teen group hoping he'll connect with someone. On our first meeting, he met 2 boys and they all went to one guy's house and played video games. Jeffrey was so excited because they had things in common. Despite my trying, he's never seen those boys again. He was disappointed all over again!

 

I was fine as long as he didn't care he didn't have friends. Now that he wants them and is lonely, my heart hurts so much for him. I keep thinking ahead to when he's an adult. Will he find someone to love? to marry? How will he make it through college when that is such a social time and he obviously has social issues.

 

Yes, I can relate.

[12Stars]

Our son will be 5 next month and so far he knows he has issues, because he tells us when he is not feeling good. Or when he is overwhelmed there are certain things he likes to do to regulate his environment. He knows that the rest of us don't have to do that.

He does have a formal diagnosis and he has asked what is autism. But we have not told him he has it, I think at this young age he would just repeat it to who ever listens to him. All our family knows and I am very open about sharing our journey. Once my son gets a bit older I will definitely let him know.

I have seen both sides where parents hide the diagnosis from the child and parents that do tell their children. For us I would rather do the latter. Only because I feel that it will help him understand himself better.

I love in the movie Temple Grandin, how she knew she was autistic and didn't have any reservations about it. It was part her, she was different but not less.

I saw so much of my son in her and that movie really helped my other children understand their brother in so many ways.

[jujsky]

My son has mild fetal alcohol effect and sensory processing disorder. I did explain it to him last year (he was 6) after reading more and thinking about it. The book I read on FAE recommends telling a child as soon as they are old enough to understand. Most of these kids know there is something different about them. To understand what it is, that it's okay, and there is nothing "wrong" with them (just different) often comes as a relief. I don't let him use these issues as an excuse to not do his work, but as an explanation to why he has to work much harder than his sister to get the same results. We talk about it from time-to-time. Another reason I brought it up (though this won't apply to you & your son) is there is a serious risk of drug and alcohol addiction in people with FAE. I wanted to start the drug and alcohol talk with DS early and often. We focus the conversation on making the right choices. It helps that my brother and I choose not to drink because alcoholism runs in our family.

[Angel]

Our experience was a little different. My dh didn't want to tell my dd. He was afraid it would give her "excuses" or make her feel different. I thought it was pretty important to be up-front with her, however, so we did tell her but rarely talked about it. When we finally started talking about it more and more to dd she was SO relieved. She couldn't figure out why she did things differently or felt things differently or why she couldn't handle things her friends could with ease. Once I was able to say it was because of her SID or Asperger's, she didn't feel so strange. We found out about it around 10yo and we started talking more about it around 12. I think that knowing what was going on really made a big difference in her being more aware of her triggers. Before she would melt down and have no clue why. Once we started talking about it, she was able to at least see what may have set her off or see when she is getting overloaded and at least try to avoid those situations or at least prepare better for them. I am proactive in helping her know what to expect for the week or the day and helping her recognize when she is getting worked up or sensory needy. She has definitely had a better time of it, other than her anxiety, the last year and a half than when she was younger.

[LittleIzumi]

:grouphug::grouphug: I'd explain sooner rather than later. It's very a different thing but my kids know they have food allergies & what that means & how that affects them. If if interferes with her schoolwork we will explain to dd (5 now) about ADD (which dh has severely--she shows strong signs of it). Dd3 had severe sensory issues & we explained it on her level at the time. I think that knowing there is a reason for certain behaviors/feelings would be better than thinking it was their fault. Dh just thought he was stupid & a loser & doomed to constant failure for most of his life. Nope, just ADD, finally diagnosed in his early 30s. It took him a couple of years to really accept that, and now he is in school again & with a 4.0. Huge difference.

[dirty ethel rackham]

We told our son about his sensory and auditory processing issues because it explained why he had these quarterly evaluations and why we were doing a program with him at home. He did go through a phase where he was balking at doing his program because he wanted to be "normal." We told him that this was to help his body and brain to process the world normally. Also, we started doing the same exercises with the other kids (since they couldn't hurt) so he wouldn't feel so picked on. Dd was actually feeling left out. She wanted "program" too.

[scrapbookbuzz]

One of the key things about Asperger's kiddos is you have to be very direct about things with them. They are literal people and need things to be as black and white as possible. My daughter was assessed and confirmed for Asperger's Syndrome last spring. I quoted a sentence from the book Quirky, yes! Hopeless, No! to her and she totally 'got it'! Be very direct and loving with your son. He'll get it. Really, he will.

[elise1mds]

My son wanted to know about his disorder so he could figure out why he was having such a hard time at home and, at the time, at school. He was 5, almost 6, when we went through the diagnostic process. He couldn't figure out why kids knocked over his pencil container. He couldn't figure out why he was in trouble all the time. He couldn't figure out why he couldn't stop the fits that frustrated ALL of us so much. He couldn't figure out why he couldn't stop a sentence from coming out after it had formed but stuttered like crazy while he was trying to form it. So to him, the diagnosis was a welcome relief. To be able to explain all of these things were caused by different wiring in his brain was a huge weight off his shoulders. It explained SO MUCH, and then when I told him there were lots of other kids out there with the same wiring, he got very excited. We bought the book "Asperger's Syndrome, the Universe and Everything," and I let him read it. He loved it. He would come to me and say, "MOM! He does [X], just like I do!" (Very cool, Son.) or "I don't do that. Do all Asperger kids do that and I'm different?" (No, dear. All kids are different, even kids with Asperger's.) For a while, he asked questions, but now he realizes there will always be areas he has problems, and he is open to ideas about how to fix them. Today, for example, I introduced the idea of "small talk" and how to make it. We've got a long road ahead to master the concept, but he understands that he DOES have a hard time with it and needs help. He's a sweetheart.

 

I think we go through the grief process when we realize that our child isn't "normal." I think you have to be able to move past the label. Use it when necessary, have it in the background, but your kid is still your kid. Even if he/she was neurotypical, you'd still have odd quirks to deal with. Asperger's kids just have more of them. At least, that's my theory.

 

FWIW, I watched the Parenthood episode and didn't care for it. But my son's issues are clearly different than the issues of the child on the episode, and my husband and I were open about the diagnosis the minute we got it because I wanted my son's input on plans to deal with his problem areas.

[Carrie12345]

 

FWIW, I watched the Parenthood episode and didn't care for it. But my son's issues are clearly different than the issues of the child on the episode, and my husband and I were open about the diagnosis the minute we got it because I wanted my son's input on plans to deal with his problem areas.

 

:iagree:

I want to type much more, but the baby has my other arm. Summary: We told ds at 7, and it's an ongoing conversation. Started with "AS is what allows your brain to excel in xyz. It's also what makes it harder for you to abc." It helped to point out my own AS-type traits and talk about how I have to work at certain things.

[Denisemomof4]

I'm in an opposite situation. I have 7 year old boys and have started to prepare them for the fact that dh has Aspergers.

 

He's on the relatively mild end, but there's no doubt that he has it. For now (because they're young), I call it "dad's computer brain." And it is.

 

People w/ Asperger's generally are extremely intelligent, as I'm sure you know.

 

I've read and heard that parents w/ AS can deal w/ teens in ways that aren't so great, so I figure that if I start prepping the kids now about the situation, I'll be able to help them through what I'm sure they'll notice about dh when they're 12, 13, 14 etc.

 

I'd recommend reframing AS -- and putting it in positive terms.

 

That are drawbacks to having AS -- and being a spouse of someone w/ AS -- but there are many positives too. These men are great providers, very loyal, great breadwinners. Of course I'm talking in generalities, but I've read all of this in books and it matches my own dh.

 

Reframe it as a positive because parts of it really are strengths (think Bill Gates, Edison, probably Henry Ford -- just guessing, but the engine was certainly his "special interest).

 

If you want book recs let me know.

 

Take care,

 

Alley

 

THis is EXCELLENT. SO GOOD. :iagree::iagree::iagree::iagree::iagree:

 

I've never wanted to state this publicly because I felt my dh deserved honor and not judgment. A few people here do know he has AS, but most do not. Most will meet him and not realize he has this at all, (it is mild but he has learned to be outgoing and social by being married to me) and other times he's constantly cutting off people and shows poor social skills. BUT, being married to me for so long, an extrovert who loves her friends, has helped him to learn a better way of communicating. ALL my friends ADORE him and consider me to be so lucky to have him as my husband.

 

I'm constantly pointing out his errors since his diagnosis last year to help him when he's socializing. He's learning. He has NO desire to go out with the guys, but we do couples nights and family nights, and he does SO well. He used to be very quiet, he isn't now.

 

So many women, pastors and even other men admire my husband for is obvious loyalty to me. It annoys my kids to no end. :D They HATE that he waits for me to come home and then will walk out to greet me at the car. They hate that he's sad when I'm away. They struggle with the fact that he struggles to have true relationships with the kids, but loves to be with his wife. (this part has been very hard and makes me very sad. I wish he had a connection with his sons, especially, like he does with me. We didn't know he had AS until it was really too late with them.)

 

He IS a very good dad, helpful in every way, loves his children deeply but shows it in "his" way. That is hard on my boys. If we had known sooner, we could have changed things. He's trying harder with his dd's.

 

There are aspects of AS that have made my life very, very hard. But mostly, AS is a blessing. Your son needs to realize that there are many, many positive traits to having AS. He may be too young to understand that right now.

 

EVERYONE has something they're struggling with, something they need to improve. Your son is no different. If he's sad or upset initially, give him time. Then do some research and have him read books to see how AS truly can be a blessing.

 

If I had a child with AS, I would try to get involved with the local AS group in your area, one where families with children with AS can socialize with each other. It would be very helpful for your son to meet other people like him.

 

I guess my only advice would be to focus on his positive traits because of AS. I'm sure there are many.

[Maeintx]

My son wanted to know about his disorder so he could figure out why he was having such a hard time at home and, at the time, at school. He was 5, almost 6, when we went through the diagnostic process. He couldn't figure out why kids knocked over his pencil container. He couldn't figure out why he was in trouble all the time. He couldn't figure out why he couldn't stop the fits that frustrated ALL of us so much. He couldn't figure out why he couldn't stop a sentence from coming out after it had formed but stuttered like crazy while he was trying to form it. So to him, the diagnosis was a welcome relief. To be able to explain all of these things were caused by different wiring in his brain was a huge weight off his shoulders. It explained SO MUCH, and then when I told him there were lots of other kids out there with the same wiring, he got very excited. We bought the book "Asperger's Syndrome, the Universe and Everything," and I let him read it. He loved it. He would come to me and say, "MOM! He does [X], just like I do!" (Very cool, Son.) or "I don't do that. Do all Asperger kids do that and I'm different?" (No, dear. All kids are different, even kids with Asperger's.) For a while, he asked questions, but now he realizes there will always be areas he has problems, and he is open to ideas about how to fix them. Today, for example, I introduced the idea of "small talk" and how to make it. We've got a long road ahead to master the concept, but he understands that he DOES have a hard time with it and needs help. He's a sweetheart.

 

 

 

Thank you for the name of this book. I just ordered it off Amazon- gotta love Amazon Prime. My son has PDD-NOS but if tested now would probably fit Asperger's. We've talked a bit about quirks but I want to give him more info now to reassure him that the quirks aren't necessarily negatives. I'm looking forward to reading this book and maybe reading it aloud with him.

 

FWIW- I wasn't overly impressed with the Parenthood episode either. I saw a commercial and decided to DVR it.

[snickelfritz]

For the younger kids, my girls just finished watching an Arthur show that was on Aspergers. As someone on the outside of the issue, I thought it was nicely done.

Edited March 4, 2011 by snickelfritz

[prairiewindmomma]

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Edited November 10, 2021 by prairiewindmomma

[DawnL]

:lurk5:

My 7 year old has SPD and we suspect is an Aspie, so wanting to see how others are dealing with this. Right now, we just can't tell him this as he would use it as an excuse. "I can't help it because I have SPD/Asperger's." I know his behavior will settle and mature into mere "quirkiness" as he gets older. Hopefully we can have this conversation when he is more capable of understanding and dealing with it.

[QueenCat]

My son was with us when he was diagnosed. I can't speak for anyone else but I wouldn't dream of not letting my son know. It explains so much about things that he goes through. Knowledge is power, IMHO. He was 9 when diagnosed but he didn't start researching more about it on his own until about age 13.

 

I asked him how he feels about having Aspergers: Jeffrey said he would have been upset if he found out we knew he had a diagnosis and didn't let him know. He likes that he understands why he is different from other kids. He doesn't feel bad because he has Aspergers. He said if your son does get upset, you should help him understand that it isn't a problem or something wrong with him, it's just something that makes him different in a special way.

 

:iagree: Even though ds knows, he still doesn't always understand. Noticed your in the Atlanta area... it was there that he was diagnosed, and had a great therapist, who helped us explain it to him, giving us great advice for the future too. Wish we were still there...