To not want to tell the other school mum's that DS has Aspergers

[thegirlinthebed]

DS just turned 6.

He's been diagnosed with Aspergers.

I'm sure the parents of the other children in his class might guess he's a little different - but I'm afraid to say anything to them as I don't want to label him forever

He's almost 'normal' but can get very upset suddenly. Normally he gets over it pretty quick and gets on with things.

Sometimes I worry if I have to leave him at a party by himself in case he gets upset and I'm not there to calm him down quickly. I feel on edge until collection time.

If I tell people then everyone will know forever - and they'll always view him as someone with Aspergers. There's so much more to him

What would you honestly think if you heard someone in your child's class has Aspergers? Would you assume that child would find similar types of children to play with and wouldn't be joining in with your child?

If you don't know someone with aspergers / mild autism what would you assume my DS is like?

If you were me would you say nothing?

"How do teenagers treat other teenagers who they know have aspergers? I remember how nice but also how mean some teenagers can be"

DS wasn't diagnosed until he was 13 (He was being assessed from very young it was just a very long time before they decided what they were going to diagnose him with rather than whether they were going to.)

It made a huge huge difference to him when his peers knew, yes he was picked on and that didn't stop once they knew he had AS rather than just being weird, but, his not horrible classmates started to intervene because they now understood that it wasn't a level playing field and after he was diagnosed was when he actually started to make friends.

I should add, we didn't actually mention DS's AS to anyone at first. I spent a lot of the time not telling, because I wanted him to be taken as he was without preconception. This, in hindsight, was a mistake as his traits and behaviours were misunderstood. He was diagnosed at 5, he's 8 now. When we moved up to junior school we began to tell people, in fact we only told him himself this year. Life for all of us has become so, so much less stressful. It was a massive weight off of his shoulders to see why he is different, that it's not his fault and to have an explanation for all that he struggles with that he can give himself and his peers.

It is absolutely a decision you should take your time over though, it was right for us but wouldn't be for somebody else. Each circumstance is unique.

Lots of good points there Squiggly.

Tbh I think a lot of parents are aware of AS and other ASD traits so may put 2 and 2 together anyway.

I wouldn't say anything for now. We've still not told DD(13) that she's on the spectrum. Not because we're ashamed or think she should be, but because we've never wanted it to define her as she's growing up. Nor use it as a peg to hang things on or believe that it limits her capabilities in any way.

Now she's getting older, she may like to know as it will help her fill in some gaps and understand why she finds some things difficult, but we don't feel the time is right. She's high functioning so it's never really been an issue.

But.... her best friend at school has AS and is quite open about it. So it's horses for courses.

Personally, I wouldn't tell any parents if DS didn't know himself. None of DD's friends' parents know, but they've probably figured it out anyway tbh.

Not because we're ashamed or think she should be, but because we've never wanted it to define her as she's growing up

Why shouldn't it define her?

It's a fundamental part of a person.

When DS was diagnosed with Aspergers aged 5, school advised me not to tell the other parents and I adhered to their advice. We have always been totally honest with DS about it, but to us Aspergers is part of who he is,just like his grey eyes and curly hair. When DS got to be about eight or nine he started to feel very different to his peers and told them himself that he has Aspergers and that his brain worked differently to theirs. To be honest this worked well, the other children were well used to him and parents were by and large supportive when their offspring came home with their news about DS. However we did discover that invites to play with his closest friend suddenly stopped, which DS was very sad about. I did hear from other Mums that his friend's mum had decided she didn't want her son associated with mine. To be honest I think it was her loss!

DS is nearly 14 and is happy to talk about his Aspergers to anyone who wants to know why he is different. He also loves to mention it in situations where it can play to his advantage. I always remember queueing at The Tower of London and DS called a Beefeater over and complained about having to queue. We suddenly found ourselves whisked to the front of the queue and having our own Beefeater to show us round the Tower!

I've got a 7 year old and a 4 year old at different ends of the autism spectrum: 7 year old very severe, 4 year old very mild. We don't have a formal diagnosis for DS2, but I've done enough research and reading over the past 5 years to be aware of the situation. I find that the people who have 'a problem' with my boys tend to be strangers who think my boy/s are 'playing up' when we're out and about: but I don't care what strangers think. I would say that if you feel your son is being judged harshly by certain people he has to see on a regular basis, then perhaps consider speaking up. The mainstream school my DS2 is at is aware of my concerns, but I haven't spoken to any of the other parents about it. If it becomes a problem for HIM - getting into trouble, etch - then I will say something. At present his behaviour is only a problem for ME!! Incidentally, I have found that whenever I mention my DS1's autism, more often than not the person I'm speaking to knows someone affected in some way.

I think it's really really important that you talk to your DC about it as you go along, just in an every day sort of way. Personally, I'd get some child-level books about it as well, if I could find some. Just start introducing it as a natural part of their life.

And, going along with that, then I'd tell other people around them too, so that when he says stuff about it, he's not met with amazement or blank stares or disbelief.

This is what I've done with my DC about a condition they have (a much less "misunderstood" one than ASD, admittedly, although there is a set of assumptions people make about it too). I've tried to make that condition a natural part of family life, and also to gradually allow them to deal with it themselves in conjunction with other people.

So DC1 (nearly 8) is now confident in dealing with adults who try to give them inappropriate food for their condition. And has also dealt with other DC making silly comments. He came home last year and told me a silly rhyme someone had made up. Not really hurtful as such, more silly. I laughed and said that shows how little they know, they've got that completely wrong (a factual inaccuracy in the rhyme). We had a bit of a chat about how other people can get things completely wrong, and what wrong assumptions they make.

I think that when there is anything at all 'different' about you, you have to constantly deal with other people's misunderstandings and wrong assumptions. And starting to deal with that early makes it much easier. I also think that having your parent on your side and helping you find ways of dealign with it is helpful.

With respect to my own medical conditions (different from my DCs and a lot more life-changing), my DM has swung all my life between being proud of how 'normal' I appear and frustration with me that I don't tell other people in difficult situations and get more help. I think this is quite understandable, but it stems from her own fundamental lack of acceptance that how I am is a perfectly okay way to be. It's just a bit different from the majority, that's all.

So, with my DC, I've taken a different approach.

Hmmm. Difficult. I have a 5yo with ?asd? He has fab support at school with 1:1ta. We're still in process for a diagnosis, but I do completely understand the 'label' thing. It doesn't change how I feel about DS, but where I have shared info with friendly parents I've had varying responses. We definitely get invited to fewer play dates than other children (1 in past year). I don't think DS notices, but he has told me other children have said he's the naughty one...

One parent has been particularly "helpful" - she "commiserated" at length when my DS had to exit the nativity play early; has warned her son and others not to play with DS because he's "diiferent" and "can't cope"... Etc. I wish so much I'd never talked to her about DS, it's been terribly destructive. I think she thinks she's being helpful, but it's just awful

Having had that experience I'd just suggest share but with caveats.

*academic - that's the reaction I fear. It has nothing to so with being ashamed of DS's aspergers -it's the fear of labelling him and isolating him. Some parents will be understanding but I have a very strong feeling that most parents would want to encourage long term friendships with 'normal' children. So some might be kind to DS on the surface but he will be the child that is different - and not invited to play with the others.

Sadly, that may happen anyway, OP. I hope it doesn't.

op I should add that DS has several really close friends who have been lovely with him and give him lots of support (mostly ones he's known through nursery, then on to reception together). They don't seem daunted by DS's behaviour (which is getting better, with support); and the parents who are lovely are coming to know DS and think he's adorable (he is!). Part of his behaviour is lack of boundaries, so he's always full of hugs - which normally charms people v quickly; but can be a bit disconcerting
.

Now is better than 6mnths ago; which was better than 2yrs ago. We're never going to change views of the few who just don't get it - but maybe we can take DS's approach as a guide and just charm people (takes time, though!)

Also I have read of so many people on here who actively sought diagnosis as an adult and once diagnosed felt much happier and wished they had been diagnosed as a child.

We truly found a lot more negative reaction and judgement when people didn't know.

I would imagine that they would be friends with the other children, but as I know a little about the autistic spectrum disorders through work, I might keep an eye on a friendship between my on child and one with aspergers, so that I could help DS understand any behaviour which he noticed as unusual, if that makes sense! So in summary, I would assume the child would be fully part of the class and make friends, but would try and be aware that his behaviour might be different in some situations.

I think particularly young children tend to accept other kids at face value. My DS has special needs affected his communication. I was scared he would be left out or laughed at, but as nursery the other kids have adapted to him, and one little boy wants to be like him and copies him!

CornChips my son realised he was different when he was 5, a little after he started school, but it was probably because his behaviour was quite challenging and none of the other kids in the class exhibited challenging behaviour (or at least not to the same extent). He used to say things like, "I wish I didn't have behaviour problems."

However, he wouldn't know if someone was laughing at him, instead of with him... social communication is very difficult for him. But he definitely knows when he's being excluded from games in the playground and stuff like that. He doesn't like being excluded.

I'm just wondering how much exposure you've had to his classmates? And how much your DS stands out from his peers. The range of problem behaviors in NT children is vast and it sounds from what you've described that it is the intensity of your son's potential outburst that may be your concern (rather than behaviors that would seem odd or quirky per se). I tended to view a lot of DS' problem behaviors through the prism of autism until I saw DD exhibit a lot of the same stuff but in an NT way. Does he stand out and if so, does he seem more quirky or bold? How does he respond to the stress of being in a class or with friends or at parties - are the traits more pronounced? is he a 'street angel' capable of saving up the extremes for you but largely pulling himself through at school? What level of awareness has he regarding his diagnosis, because once you start talking, he will hear it back one way or the other. Labels can be positive and negative and which way the balance tips is a very individual thing.

In our case, we haven't shared the label, even with his school. He is subtle in his presentation and his preference for structure and rules has made fitting in at school a little easier than we expected. I don't know if that will continue to be the case, or if his particular range of traits may just be well-camouflaged in this younger peer group. It did help that the school he attends put a big focus on integrating the kids socially and emotionally, encouraging friendships, teaching play skills and group games so the main kind of support he needed was already provided to everyone.

I did tell a few friends initially but it was painful to watch the change in the way they looked at and interacted with him. I chose not to tell our families because some of our relatives have ungenerous attitudes to SN and I'd prefer to be criticized for my parenting then expose him to that ignorance. That can be lonely though.

I think whether or not you tell other parents those who are broad minded and compassionate may be a little more patient and considerate but those who are ignorant will be as ignorant as ever.

My DS has aspergers, its a part of him in the same way he has brown hair (or blonde hair...)

I dont care if people know, its often easier when people do - as people are very judgey! everyone at his school probably knows as he is in the SEN area.... and we dont care if they know

I haven't read the whole thread, but I have a son in year 1 like yours. I find myself often talking to my son about our differences. He is prone to remark on what he thinks he's good at, what he thinks he's bad at and likewise with his peers, so we have plenty of opportunity to talk about strengths and weaknesses, as well as modesty, pride and just being happy to be who we are.

I would welcome a discussion with him as to why one of his class mates displayed behaviour he maybe found confusing or frustrating and I would explain the term Aspergers with him in the same way I would explain about the little girl in his class who has coeliac disease. Kids of this age are so open to understanding I find. And I'd like to think that I could give my son the tools he needs to welcome your son into his friendship groups - patience, acceptance, recognising what you son liked to do most. I'd tread carefully because I wouldn't want to make a massive deal out of it so that your son felt singled out.

Best wishes to your son. I hope he gets the support he needs.

Labels are for suitcases not people it's a diagnosis.

That was to cinderling.