Just diagnosed - should I tell my parents?

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My son has just got a diagnosis. The paediatrician has presented us with this option as a means to an end because my son is not coping in his school and needs a one to one helper, and a diagnosis of Asperger's will help with this.

My son only seems to have it mildly... at home he is a happy and sociable child, having lots of tantrums but that's pretty normal for his age. I'm not too happy about the diagnosis, but it's been two years in coming and I really think if it helps him get help in school then good.

I think my son got it from my genes. My mum might have it a bit, she seems to be unable to empathise and put herself in another person's place, and my Dad is more of a classic case. Neither of them have had it diagnosed and my Dad speaks very harshly and negatively about people he has deemed "autistic" (it's his new buzz word for insulting people with).

I can't tell him about my son. My son is just like my Dad and he is interested in the same things - technology. I want to play up their common interests. If I tell my Dad that the school thinks my son is a special needs case I just know that Dad will write him off as an idiot, and will play favourites, he already acts like the sun shines out of my daughter and my son is just "the other one". I was on the receiving end of this in my own childhood as my Dad favoured my sister and ignored me, so I'm very unwilling to see my son being similarly unfavoured.

My parents live 400 and 500 miles apart (they split up when I was a child) and I just don't think they need to know. But what do other parents here think?

I hope I fit in here- I kind of think I don't so far because my son seems to be a mild or borderline case but I guess some of you will read this and feel sorry for me that I'm in denial about the diagnosis or something. I've been on other forums where I have tried to make friends and it's all gone horribly wrong so please please be gentle with me here.

Can anyone advise me on books I could read about Asperger's that won't make me want to commit suicide? So many books seem to be so depressing. I did a lot of reading two years ago and have innoculated myself against wanting to pick up another book. They all seemed so bleak.

I am a mum aged 31 living in London England. I have a 5 yr old son and 3 yr old daughter. My husband is great and he works for the London Underground. He is not happy with the diagnosis, he thinks it will hinder my son's progress but I am determined to stay optimistic.

Start by reading Tony Attwood.

http://www.amazon.com/gp/product/185302 ... s&v=glance

The book will give you lots of good, positive, understanding of AS andsome very practical strategies to help your child.

Thanks, I will have a look and see if I can buy that book.

I read the first few pages of that book and just see places where Asperger's children's behaviour is described and I think, "no, that's not my son". That's been my problem with these books but I suppose they have to describe the most typical AS presentations.

Thanks for your help Litguy!

I would start with any book by Tony Attwood too. He is definitely on the positive side and his writing is easy reading. I actually bought his dvd's for my husband and son who both are not advid readers.

I don't think parents need, or even really want, to know all the details sometimes.

I do have a concern though. You don't want your son to think Asperger's is something to be ashamed of. If you tell him he shouldn't mention it, 1) he then surely will or 2) he will think it is something bad and shameful. Yet if you don't tell him not to discuss it, might it come out in conversation? Then how will your parents react? Will it be worse if they think you were somehow hiding it.

Its a tough situation.

tony attwood for sure, he makes it more simpler, and descriptive. its better if you be honest with your parents because he's your son and you should love him no matter what. just acknowledge he's diffrent but still your son.

Last edited by sandra3 on 20 Nov 2005, 7:59 pm, edited 1 time in total.

When my son was diagnosed they said he was on the mild end too. But that wasn't important what really mattered to me was the fact that now I could better understand some of the things he did and how I could be a better parent by having more patience with him. I learned so much by reading some of the books just because after reading a light bulb would come on in my mind and I could say, "Aha, so that's why he does this or says that."

I was lucky too because after I gave my parents some information and gave them clues about how to make his visits better by eliminating certain "normal" expectations of behavior everyone seemed to have more relaxed visits.

I don't know if that helps at all but what was important to me was to make sure the four of us first work on what the diagnoses means for our immediate family then worry about parents later.

Good Luck

my son is on the high-functioning end as well....for years, in fact, everyone claimed that his only real issue was that he was ill-mannered, rude and a lazy genius.................finally got the diagnosis, and you'd think people would lay off...my mother-in-law, when faced with the notion that her son ( my hubby) was also diagnosed with Aspergers , claimed that we were focusing too much on the past ~ we should live in the moment....her son was just "lazy"...........AAAAAAARRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGG!! !! !! !! !! !! !! !! !!
being an aspie is nothing to be ashamed of...you need to let your son understand that. sure, it's a good idea for your son to form a relationship with his grandfather~ but is that what you really want considering his low tolerance for people who are "different" ???
you don't say how old your son is, nor how far away your parents live from you. Is it possible that you could give your son time to process this new diagnosis before telling your parents?

Hello everyone, thankyou for your replies, sorry for my delay in replying but I couldn't get this site to load earlier.

I don't know what to tell my son. I have told him about the statementing process and how he might have a special helper to help him in school. He seems okay with that.

I haven't said he is Asperger's to him, I don't know if it is a good idea to tell him when he is only 5. Don't want him to feel singled out or anything.

I don't think my Dad would be more patient if I told my Dad my son had Asperger's Syndrome, chances are he would write off my son as an idiot, and would treat him without respect and I would rather my Dad was blissfully unaware than that he knew and had no understanding of it. My Dad is very set in his ways, you can't teach him things. I just couldn't bear the thought of having huge fights about my son with him, I would rather just keep Dad in the dark.

I might tell my Mum. But she would give me some rubbish advice, she always does, which is why I don't want to tell her. My Mum considers my Dad "scum" and other such words, and as my son is so much like my Dad in behaviour patterns, and the way my Dad is is probably part of why their marriage failed, I could not bear it if my Mum started to think of my son the same way that she writes off Dad. There's precious little respect to go round in my family, also everyone is a bunch of intellectual snobs except me, and if Mum and Dad thought my son was anything other than an intellectual genius, they will make their disappointment felt, I am sure. (The ironic thing is that I think my son could well have a capacity for excelling intellectually himself, if only he wasn't playing up so badly at school!)

My sister's coming to visit me this weekend, so I will tell her and tell her not to tell our parents.

We're a good old typical dysfunctional family, we are, my nuclear-(meltdown) family! The more I write about them the more I think, "Sh*t I really need some counselling". It's only in writing this down I see how screwed up it is.

Thanks all for the warm welcome. I will reread the Asperger's book I already have. I used to be short on patience with my son when he first started playing up in nursery and the nursery teacher gave me a lot of hassle about it, but over time and with the paediatrician's help I have seen I should not try too hard to get my son to change his ways when he is not capable of change. Also I have a very wise and kind mother-in-law who lives opposite me and she's very practical and helpful about the Asperger's diagnosis. (Just to show my life isn't all about my awful parents!! !)

On the contrary, you can and must teach him to understand his differences, that way he can learn how to fit in better. It's very important. If you start now when he is young, he will have a much better and easier time when he is older. And then perhaps, and this I pray as my son is 9 years old, he will be a happy, decently adjusted, successful adult, who is more capable of having a lasting relationship and live independently.

I wouldn't give him a label at 5 years old, but I would be more proactive to correct his behavior, teach him right from wrong and increase his socialization with others his age (i.e. soccer, scouting, social skills counseling, etc.). Be patient, be firm and be consistent.

I find its a fine balance between letting my son be himself and fitting in.

I think its important to teach him the skills he will need to fit in and the slowly put him in situations where he can use the skills to get confortable. Once that occurs, he can then decide how far he wants to take the skills.

This article discusses how I feel about it.
http://wrongplanet.net/modules.php?name ... 897#127897
He will always be an introvert and that's okay. I want him to be an introvert with skills though.

BeeBee

I see no reason to mention the dx of Aspergers to your parents if they can't understand the issue or be supportive about it. Especially at age 5, I don't think there is that need, unless your parents are intimately involved with the child raising responsibilities. My son was 10 when we received the Aspergers diagnosis. We did tell our parents about it, and my mother in law immediately came to his defense like we were saying something bad about him. My parents think that it is something that he'll eventually grow out of (he's 18 and hasn't grown out of it yet!). But at least they continue to love him for who he is. We've always tried to be honest with my son about his disability and help him to understand it and be open about it. He is just beginning to be more open about it and even wrote an English paper about the struggles he has. He went into detail about what his disability was without actually saying the word Aspergers. So, it's a process that as they get older they will have to eventually come to terms with.

aspiedad2

My 12 yr old daughter has aspergers. I have described it as a learning difference not a disability. We have had to work together to find ways around issues that stess her out.
These kids tend to be very bright.
There is a good book out there for young children that we used with her. It's called "Aspergers like Me" It done in small chapters in a workbook style where specific issues that aff4ect yor son can be written in so it becomes a book about themselves. My daughter keeps this book on her shelf and still refers to it.
Lauré

Hi Beebee,

I haven't told my son about it at all. I don't really want to unless I have to. I don't want him thinking it is something bad or shameful because I don't think that myself - my son is just himself and I accept this about him, and nothing about him has changed since the diagnosis. I only want to tell him if I have to.

I had my sister and brother-in-law visiting. I think the impression they have of my son is that he is wilfull and naughty, and given that my children are about the only children my sister and brother in law know, I do not think they will jump to any conclusions about his behaviour. I nearly told me sister but the opportunity never arose. I might next time, I am not worried really because I don't see them very often (they live 400 miles away).

I think my parents might want to know but I can predict with 99 per cent certainty that they will say nothing helpful or useful. So I would rather save myself the grief. Thanks for your reply.

HI Ster,

Lazy? Hmm. Your mother-in-law sounds like a trial! I'm lucky in that I have a very decent and understanding mother-in-law but not very understanding parents. My Dad has a low tolerance for everyone but himself really, he's racist, he's bigoted, he has very extreme views, but on the other hand, he's very warm-hearted, and funny and cares a lot for his family.... I don't want to paint a black picture of him because I do love him a lot but he can say the wrong thing, that's putting it mildly.... he has nearly no emotional intelligence which makes me think that he might be Asperger's himself.... so it would be a touchy subject to say "My son has this, and before you stigmatise him for it, I think he got it from your genes..." - not a conversation I am keen to have.

My parents live a long way away and I only tend to see them in the school holidays.

Thanks for your post, Ster, it has been very helpful.

Yes, I do try and get him to learn the importance of fitting in. But I am patient with him now whereas before I was angry, and my anger wasn't accomplishing anything but getting both of us upset.