Disclosing child's diagnosis to children and parents

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I am the father of an seven year old girl diagnosed to have Autism-spectrum syndrome. At school, we have taught her how to perform well during the lessons. However, we have noticed that she can't keep up with her friends in the social arenas during the breaks. She mostly plays by herself, and invitations to birthday parties has become more scarce over the last year. Gym classes are also failures.

Problems include loudness, impatience, failure to read body language, not understanding social codes, rudeness, and physical clumsiness. (And oh how we love her, and it is painful to even write this list).

The social service professionals, who give our parent group coaching and advice, now say that authors of the field nowadays advice parents to disclose the diagnosis to the other kids at school, as this typically creates understanding and support from the children.

Well, I don't know - perhaps this would lead to us arming our daughter's bullies with better ammunition. However, the professionals tell us that they have experience of such disclosure working very well.

What do you think? Have you experience of telling? How would we frame such an announcement in order to create good 'psychological contracts' with the other children?

You will likely get conflicting replies on this topic - there was a thread not too long ago from a mom whose daughter (older than yours) adamantly did not want her peers at school to be told and then there are examples of when it works out great - see Caitlin's blog http://momnos.blogspot.com/2010/03/circle-of-friends.html I cried when I read this hoping every second that my son will find some acceptance like this when he reaches this age.

Honestly, I think the bullies can always find whatever ammunition they want.

There are some programs designed specifically to help in this area... don't know much about them, but I've read about them on mailing lists and they sound useful. Annoyingly, I can't remember any names or websites, but perhaps someone else will know.

My 8 year old AS son took it upon himself to tell his classmates. He did say that some of them had laughed and he didn't understand why they should do that as no one laughed when a girl in his class was diagnosed with diabetes. Other than that, it doesn't seem to have caused any problems, and the laughing was more of a puzzle to him than a source of distress.

His classmates are a nice group of kids though and they are all used to him and his unusual behaviours. He does have a small group of friends that he has played with since he started school (he's just started P5).

My advice would be to go into the school and discuss it with the class teacher. I suspect that although some children may try to tease or bully on the basis of the diagnosis, they would be just as likely to do on the basis of your daughter's unusual behaviours. Involving the class teacher should mean that s/he can be alert to anything like this, and can involve the class in thinking more generally about difference and how we treat others and would like to be treated ourselves. It is also likely that a disclosure will make a least some of the other children more understanding and sympathetic towards your daughter.

Is your daughter aware of her diagnosis? Is she unhappy at school or is she content playing on her own?

This might work in the lower grades, but never do this later on.

She's definitely one of us!

The rudeness may be a direct result of the difficulty understanding social codes - we have a tendency to be bluntly honest about things, sometimes not realizing that what we say is hurtful to others - we just tend to assume that its more helpful and logical to call a spade a spade and let the chips fall where they may, if I may mix metaphors. I personally have always hated being lied to by others, so its not usually in my nature to mislead others or to withhold information that might be helpful to them even if it is "yes, those pants do make your @ss look big."

I'd want to know.

In any case, that's the only thing I see on your list that actually needs any correcting. The impatience may come from a low threshold for frustration, which is not uncommon from minds that can be obsessive in their insistence on perfection and patterns, but once the idea gets through that offending others is counterproductive, that can be contained, though it may take a few years for the idea to sink in. I do believe that the most valuable lesson a parent can impart to their children is The Golden Rule. Close behind that is that Actions speak louder than words.

The loudness is probably unintentional. We do get carried away.

As to whether you should disclose...



I second that emotion.

Please keep in mind, and remind teachers, the name is Ahz-pair-gur Syndrome, not ASS-Burgers.

If she is just distant from her peers and not getting bullied then disclosing her diagnosis would be worth a try. Have the teacher do a presentation on it to the class if you trust that teacher.

I agree with informing classmates of the issues, as long as it is handled carefully. Face it, the kids have already probably labeled your child, so if they are provided explanations and things to do to help out, it may help the situation. It definitely helped in my son's case.

Check out my latest blog post describing exactly that situation - A+ for the Teacher in Aspergers: A Mom's Eye View.

Good Luck!
Joanne

You're raising the idea of using a label for a child and how that label will be perceived by a child's peers.

Will the label be viewed as being helpful or as a stigma so to speak?

As you know, there likely will be no consensus among the children.

Some children will view a label as educational vs others who may view the label as a way to exclude/reject other students from their circle of friends/cliques.

Personally I do not feel that very many seven year old children can actually comprehend what is really meant by the term autism/Asperger.

I suppose I would lean toward the idea of not saying anything because I don't feel that saying something will actually change how most of the children already look at what's going on.

---

http://www.out-of-sync-child.com/
http://www.dyspraxiafoundation.org.uk/

For some reason, regarding gross and fine motor control challenges, the term dyspraxia seems ok to me (vs Asperger - autism). I would think that children in general may be more open to a word like dyspraxia vs a word like autism since dyspraxia is about subtle gross and fine motor control challenges and is a little more descriptive it seems to me.

http://www.balametrics.com/
http://www.infinitywalk.org/
http://www.bal-a-vis-x.com/
http://en.wikipedia.org/wiki/Wii_Fit

It's your decision, not mine.

Do what you feel is best.

Best wishes.

Here's the link to my article about how we handled informating my son's 3rd grade classmates. It has been a huge success, as those classmates have been a great source of support now for the past two years:

http://asdhelp.wordpress.com/2010/08/24 ... -teamwork/

Joanne

OK, per the advice on this thread and because I've been going back and forth with the idea myself, I sat my 10y/o down and told him I wanted to explain something to him. I went ahead and explained diagnoses - first, by defining the word in terms of medicine (e.g. diagnosis of pneumonia) and then explaining that Psychologists, psychiatrists and social workers have a slightly different use of the word, where they look at people's differences, and also the things people struggle with, and give them a name so they know how to help them. I told him that this doesn't mean anything is wrong with him, just that we have a diagnosis for him. He immediately responded that he didn't want to know and began to panic and cry and cover his ears.

I told him it was his choice, we would tell him and show him whatever we could about it, but it was his call. I also said that we sometimes need to talk about it with social workers, health insurance, etc. so he might hear us talking about it. I'm not sure where else to go with this. Obviously, he needs to come to terms with it, but I'm not sure that forcing him is the way to go.

I agree Momsparky - don't force the issue. Give it some time and then reintroduce the subject, but don't make a big deal about it. Make it very low key....very matter of fact, positive (focus on the strengths) and unemotional. Alternatively, you may want to have a kid-friendly book about Aspergers Syndrome just 'lying around' for him to explore on his own.

My son is very relunctant to try anything new. He is a perfectionist and won't attempt something unless he believes he will succeed at it. Consequently, if my kids get a new Wii game or something, he will not play with it himself. He will watch my other son play it and then when no one is around, maybe he'll try it himself.

I don't know your son, but perhaps he works better by figuring out things on his own first (i.e. reading the book) and then maybe talking about it?

Good luck...I'm sure its very difficult for you. I wish kids came with instruction manuals!
Joanne

Thanks, MomsEyeView - yes, that's exactly what he's like (see the thread on bike riding; we had to look up gyroscopes and physics.) The perfectionism makes any kind of intervention really, really difficult. We did try to leave "Anything But Typical" (not the most gentle choice, I recognize, but it was the best I could find) lying around, but he saw the title and absolutely refused to even look at it. He really fears not being typical - which is really too bad, because that's what makes him so terrific.

Any suggestions for this kind of reading material? It would be more helpful if the book was more about Aspies, he's more like that than anything.

Yes, Momsparky, I do! I gave my son a great little book entitled "Can I Tell You About Asperger Syndrome" by Jude Welton. I wrote about the process of telling him his diagnosis in my blog recently. It contains a link to this book, if you wanted to check it out.

Here's the link to my blog post, if you are interested:
http://asdhelp.wordpress.com/2010/08/17 ... the-truth/

Keep us posted!
Joanne

My experience? I think bullies will be bullies regardless and this will give them more ammunition, however, kids who are NOT bullies might be nicer or more understanding with your child if they know.

ie. one little 13yr old idiot who is an acquaintance treated my child VERY badly when we saw him...his mother knew about the diagnosis, the kid did too...he was still an idiot...really, worse than that...

on the other hand, where we now live, some kids/adults know and others do not...of the kids whose parents do know, most are very understanding of our son...even the kids whom we do not know the parents, they are mostly nice to him once they know...especially the girls it seems...

We struggle with this constantly...do we tell people and risk him being treated "differently" or do we keep our mouths shut and let people treat him as a "normal" kid?