Telling My Son About His Diagnosis

Page 1 of 2 [ 29 posts ]  Go to page 1, 2  Next

vanhopper
Emu Egg
Emu Egg

User avatar

Joined: 24 Apr 2015
Posts: 2
Location: United States

25 Apr 2015, 12:05 am

Hi Everyone,

I'm new to the community so please forgive me because I'm sure this post has been made more than once.

Our son is 9 years old and is aware that he is different than the other neurotypical kids in his school. He struggles to get through the day and really has not been able to engage with anyone else in his class or otherwise in terms of a friendship.

There is just too much going on in terms of academic stress and sensory overload. We live abroad now and our options for schools are limited. Our guy has expressed that the other kids are "bored" with him and don't want to be his friend. He's shared that a few kids have picked on him but, as far as we know, it hasn't been a continuous experience.

Is it time to let him know that he is awesome? Different, but awesome? My husband and I have talked about not making it a big deal, but to start acknowledging Aspergers. Like most parents, we don't want his diagnosis to be a crutch. We just want him to understand that what works for other kids, may not work for him.

I'd love to hear from anyone on the Spectrum about their experience being told about their diagnosis. Also, parents of Aspies and other super kids, how did it go for you?

Thank you so much!

By the way, we are moving back to the States this summer and have found a terrific school for both boys.



DailyPoutine1
Veteran
Veteran

User avatar

Joined: 14 Mar 2015
Age: 19
Posts: 2,278
Location: Province of Québec, Canada

25 Apr 2015, 12:07 am

Tell him that having no friends doesn't mean he's worth nothing, that he's smart and will achieve goals most people won't achieve in their lifetime.



vanhopper
Emu Egg
Emu Egg

User avatar

Joined: 24 Apr 2015
Posts: 2
Location: United States

25 Apr 2015, 12:23 am

Thanks DailyPoutine1. I completely agree with you.



DailyPoutine1
Veteran
Veteran

User avatar

Joined: 14 Mar 2015
Age: 19
Posts: 2,278
Location: Province of Québec, Canada

25 Apr 2015, 12:27 am

vanhopper wrote:
Thanks DailyPoutine1. I completely agree with you.

Welcome :)



Agemaki
Deinonychus
Deinonychus

User avatar

Joined: 11 Oct 2011
Age: 30
Gender: Female
Posts: 371
Location: Squirrel Forest

25 Apr 2015, 3:49 am

I wish I had had a diagnosis as a child. I would suggest reminding him that it is okay to be different and to frame the diagnosis as a validation of his experiences. Even though I wasn't diagnosed I figured out that I was different fairly early on, from sensory issues to difficulty relating to peers. Since I didn't understand why I was different it caused me a lot of stress and I often blamed myself for not being able to do things that other people could do and for having interests that others did not find interesting. If your son feels similarly, explaining the diagnosis to him could help with the anxiety of not understanding. I would also tell him that it will get better, as an adult he can make a career out of his interests and surround himself with people who share similar goals. His peers now won't be his peers forever. As an example from personal experience, I became obsessed with Japan when I was 11 years old. At that point my peers were interested in socializing and flirting and thought that I was pretty weird. Life was fairly rough back then. But while I was pursuing my MA in Japanese history I was surrounded by other grad students with whom I had a lot in common and could easily converse. He will find a niche where he feels at home.



Adamantium
Forum Moderator
Forum Moderator

User avatar

Joined: 6 Feb 2013
Age: 1019
Gender: Female
Posts: 5,998
Location: Erehwon

25 Apr 2015, 9:53 am

Agemaki wrote:
I became obsessed with Japan when I was 11 years old. At that point my peers were interested in socializing and flirting and thought that I was pretty weird. Life was fairly rough back then. But while I was pursuing my MA in Japanese history I was surrounded by other grad students with whom I had a lot in common and could easily converse. He will find a niche where he feels at home.


Thank you for sharing this inspiring history. Accounts of experiences that promote hope are invaluable.

すばらしい!! !



InThisTogether
Veteran
Veteran

User avatar

Joined: 3 Jul 2012
Age: 51
Gender: Female
Posts: 2,812
Location: USA

25 Apr 2015, 2:32 pm

My son has ADHD and NLD. He was diagnosed when he was 7 and has known ever since (he is 13 now). He has never used it as a crutch, but it has been very helpful in helping him understand himself. I have never regretted telling him, and I felt that I had to at the time. He was very miserable, because he recognized he was not like his classmates, he didn't know why, and he was internalizing things and thinking it was because he was a "bad kid." When we got his diagnosis, we explained to him that his brain works differently than most people. Not worse, not better, just differently, and that it was going to mean that somethings would be very easy for him (that may be difficult for other people) and some things would be very hard for him (that may be easy for other people). He also is well aware of his issues with executive functioning and figurative language. We work toward positive compensatory strategies and he is coming along very nicely.

His younger sister was diagnosed with ASD when she was 2. She is 9 now. She still doesn't know her diagnosis. My son feels very strongly that he should, but for some reason it has never felt "right" to tell her. When she was younger, she had little insight into the fact that she was not like her peers. She did not view herself in a negative light at all, so the reason I told my son (to help him understand and not negatively internalize things) never existed for her. Now that she has gotten older, her ASD symptomatology has gotten less and less. I would say she is "mild" now. In fact, sometimes I think she is going to be a shadow (traits of AS, but not diagnosable). If you do not look at her history, and only look at her today, she has mild deficits that may not warrant a diagnosis. She is clearly not "typical," but not clearly ASD, either. Anyway, it makes it hard for me to figure out exactly what to tell her. She has recently taken up telling people she has ADD, so I know she realizes she is not "just like everyone else" and to be honest, she may actually have ADD. So, perhaps that is the route I will start with. She does know that her brain works differently--she used to have a 1:1 at school and certainly knows that no one else did. Sometimes I wonder if it is simply OK for her to know that she is different, but not to attach any label to it at all?

Agemaki, my son is super interested in all things Japanese right now. It started with Pokemon and has grown from there. He, too, is not interested in the things most of his peers are. My daughter draws some pretty awesome chibis.


_________________
Mom to 2 exceptional atypical kids
Long BAP lineage


MollyTroubletail
Veteran
Veteran

User avatar

Joined: 21 Oct 2010
Age: 50
Gender: Female
Posts: 1,185
Location: Canada

25 Apr 2015, 2:50 pm

I knew from kindergarten that there was something "wrong" with me and it made me feel terrible and a bad person. It's much nicer to know you're not all alone and that there's a group to which you belong.



tagnacious
Snowy Owl
Snowy Owl

User avatar

Joined: 27 Mar 2015
Posts: 131
Location: NJ

25 Apr 2015, 4:00 pm

For the love of God, just don't cry when you tell him. Scared the s**t out of me when my Mom did that when I was nine. I thought I was defective. And make sure you check your own assumptions. I have an early memory of being told that I would never go to collage. I was 9 years old! You don't know what's going to happen. You don't know what the future holds for your son. Sometimes, we have growth spurts. I didn't catch up academically until the later half of 8th grade. (I ended up getting a graduate degree, in part fueled by a desire to prove this ancient prediction wrong.) But I'm sure you know all this already.

I really fail to see how this diagnosis could be a crutch. I'm an extremely earnest person and I have a hard time understanding the concept of manipulating other humans like that. I think this is a trait I share with MANY aspies. Most kids are already trying their hardest to make their parents proud. Are you trying to say that it might defeat his spirit? How could understanding yourself do that? Again -very earnest club that your son is entering into. We don't suffer fools or manipulators well. Your son already knows he's not typical. You didn't say that he's stupid. He gets it. How is having a word for that difference going to make it worse?

I would be very careful to make sure he understands what a spectrum is, and that he's on the mild side of the spectrum. He might know someone on the more challenging side of the spectrum and misunderstand you to mean that he has just as many challenges. The truth is that people on the mild end of the spectrum often have a much easier time in life and are able to do more things independently than those who are more severely affected. This is a real problem with the new ASD language. While I applaud the idea that we all need help in life, and that people who are very challenged with disabilities need to have their human dignity upheld, it makes conversations like this one more difficult. Children will tell you the truth every time. There is an important difference here, even if we haven't figured out how to say so with humility and dignity.

There are lots of good real life examples of spectrum that you can use. It would be best to use one that fits his interests.

There are some books about autism that might help start the conversation. There's a good picture book called "My Brother Charlie." https://www.goodreads.com/book/show/698 ... er-charlie

Sounds like your son might be a bit beyond the picture book stage. Maybe someone here has a good older kids' book to recommend? Aspie's are all over the young adult fiction world. The little brother in A Wrinkle in Time comes to mind. But you want one that actually says "autism" so that you can talk about what that means.



PlainsAspie
Veteran
Veteran

User avatar

Joined: 25 Jul 2014
Gender: Male
Posts: 518
Location: USA

26 Apr 2015, 10:59 pm

I was about your son's age when I was told, though I'd known I had something for quite a while. Honestly, I was hurt my parents waited so long to tell me (not that it caused permanent damage in my relationship with my parents).

I'd suggest emphasizing it comes with strengths and weaknesses and does not mean his future can't be bright. Maybe find a book with a positive viewpoint about it geared toward kids his age to read with him.



CWA
Veteran
Veteran

User avatar

Joined: 13 Jun 2012
Age: 41
Gender: Female
Posts: 697

27 Apr 2015, 8:56 am

My daughter has really never not known. It's her life and it's her business. Part of learning and growing up is handling your own life and your own business so she's been a party to everything having to do with her aspergers including IEP meetings and she's been a huge part of her own therapy. I want her to have ownership and the last thing I want is for her to feel powerless.



tagnacious
Snowy Owl
Snowy Owl

User avatar

Joined: 27 Mar 2015
Posts: 131
Location: NJ

27 Apr 2015, 9:07 am

CWA wrote:
My daughter has really never not known. It's her life and it's her business. Part of learning and growing up is handling your own life and your own business so she's been a party to everything having to do with her aspergers including IEP meetings and she's been a huge part of her own therapy. I want her to have ownership and the last thing I want is for her to feel powerless.


YES!! !! This. Listen to this person.



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Age: 60
Gender: Female
Posts: 11,155
Location: Northern California

27 Apr 2015, 3:06 pm

My son went through testing when he was seven, and we were always open about what was going on. He could see he had some struggles, but also that he was smart, and we talked about wanting to understand the gaps that we could all see. When the testing was done, we told him that it was clear his brain worked differently, and there was a name for it: Aspergers (or, under the new diagnostic criteria, Austic Spectrum). Since he wanted to be an inventor at the time, we also told him about the famous people suspected to be ASD.

My son has never used it as a crutch (not to say he was never tempted to), just as an explanation: "Ok, I will have to work harder at this because of my ASD" or "this is easy for me because of my ASD." In the same first conversation we had talked about how this information was a tool that would allow people to know how to help him, and that there was no reason he couldn't still achieve any goal he wanted to, just that he may have to come at it differently. Over the years, we've continued that with open conversations about how things were going and how he might work around issues. There definitely have been times he felt something would not be worth his time, but we would then focus on a goal we knew he had that extended beyond the immediate, and showed him the connection.

It isn't like being ASD isn't going to form someone's life in one way or another, however. Now almost 18, my son definitely finds dealing with people exhausting and confusing, even though he has learned how to do it and most people think he does it really well (he is even going to prom with a group of friends, despite disliking dances). But, for him, that piece of knowledge is definitely part of what is driving him to be a computer science major: there is a logic to the cyber world that he feels much, much more comfortable with, than he does with people, and the idea of spending most of his work day inside that comfortable world, reducing how much he has to interact with people (although he knows he still will have to), definitely appeals to him. That isn't a bad thing; we all have to choose careers that fit our inherent strengths and weaknesses, and knowing what those are at 18 is pretty smart.

Without understanding their ASD, our kids will quickly form their own conclusions about what makes them different, and my experience has been that those conclusions tend to increase the height of the barriers and, in effect, become destructive. Much, much better for the lines of communication to be open so that you can gently correct all the incorrect assumptions your child will form.


_________________
Mom to an amazing AS son, who recently graduated from the university (plus an also amazing non-AS daughter). Most likely part of the "Broader Autism Phenotype" (some traits).


carpenter_bee
Snowy Owl
Snowy Owl

User avatar

Joined: 25 Oct 2012
Gender: Female
Posts: 144

08 May 2015, 1:06 pm

My son was diagnosed at age 6... he is now 8, and I've only recently started using the words "Aspergers" and "spectrum" around him, but all along (even before he was diagnosed) I've made it a point of letting him know how he shares a lot of his differences with other family members. We have a lot of spectrum-type behaviors in our family, and certainly others would have been diagnosed if they were kids now, but of course the way they manifest is unique in each person... but I've found it really helpful (and he seems appreciative) when I can say stuff like, "this way you are feeling right now, that reminds me a lot of my brother... he gets really frustrated by that too." Or his grandpa. Or myself. Or my late mother. Etc. So all along, while he clearly KNOWS he is not like other kids, neither does he feel ALONE. He already has a community of people who "get it" and not only that, but whom he loves and admires. So now that I'm starting to weave in the technical terms, rather than it being a blow, it's just a way to label the stuff we've already been talking about. He did laugh though when I said "Asperger's" and asked me not to use that word because he thought it sounded ridiculous (I think he latched onto the "ass" syllable.) So I said I'd say "spectrum" instead and he was cool with that.



YippySkippy
Veteran
Veteran

User avatar

Joined: 26 Feb 2011
Age: 39
Gender: Female
Posts: 4,128

09 May 2015, 10:13 am

My son started noticing that he was different from other kids in first grade. His father and I had noticed quite a while before that. He was diagnosed in 3rd grade. We told him about the diagnosis right away, in simple terms and without getting all dramatic about it. He was okay with it because he saw us being okay with it. We explained that he was born with a different brain, a different way of thinking and viewing the world. We told him he wasn't sick, but that his mind would always work this way. We told him about the strengths of being an Aspie, such as being able to concentrate well, and the ability to find solutions to problems that would not occur to other people. We told him about some famous people who were (or were likely) on the spectrum.
And then we told him about the hard part. He is really good at math, so I said something like, "You know the way math is easy for you, but some people in your class find it difficult and need extra help? Well, your autism means that you need extra help talking to people and making friends. Other people might find it easy to know the right things to say and do, but you will need to work extra hard at it, just like some people have to work extra hard at math. Everyone is good at something, and no one is good at everything. Knowing you have autism helps us figure out what things are difficult for you."