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?

ummeeerr that's what I feel. Its DS's information

What if when he's a teenager and everyone knows but he wishes everyone didn't know

Or maybe he won't mind people knowing -

As a mum, no it wouldn't bother me in the slightest. My ds and dd have had kids with additional needs in their nursery and early primary school years. Whenever they spoke about these kids behaviour (dd was hit on occasion whereas ds was the object of their affection) I would explain that some peoples brains are unique so they see the world differently. They got this and it was never an issue, except they learned to be a bit more patient and understand. Fwiw my mum has worked with kids with additional needs all her life with different severities so I've been brought up to treat them just like everyone else to an extent.

I had one parent not want to tell me what their child's diagnosis was. They had one, but she didn't want him 'labelled'. It actually made things much harder, as whilst I could differentiate based on what I felt he needed, I was not able to access funding to help with his needs (I paid for a chair cushion for him out of my own money, in addition to other resources). He had already been 'labelled' by other teachers, children and parents based on his behaviour, whereas being open about his diagnosis may have actually helped the situation.

My DD was diagnosed aged 12.( we suspected for years before) She is now 20. I have not told a single other person. ( other than her school teachers) She wanted to keep it quiet. It was very hard for me at times. I wanted to talk to my friends about it, & share some of the hard times.
It has worked for her I think. Yes she has certain traits, but they have lessened so much as she has got older. She likes the fact she was never given a label by her friends & relations. She has played up to the messy, clumsy, quirky girl, almost like she is playing a role. People think she is sweet & funny, a bit old fashioned in some ways. She is at uni now, 2nd year & doing amazingly well.
As a mum I would have liked to share, but I kept my promise to her. I don't if it would work for everyone though.

My son is also 6. There is a little guy in his class who has had difficulties making friends and has gotten into a lot of trouble this year as he has got really upset with other kids and has lashed out when things didn't work out the way he expected them to in class and the playground . The poor child seems to find social situations such as parties where there are lots of kids very hard and as a result he has gotten really upset at every party this year and is convinced that the other children hate him. It is really heartbreaking to watch and as a mum I wouldn't want my son to have to go through it. I would prefer it if his parents told me in advance if there was anything that I could do to ensure that the child enjoyed my son's party and in return I could explain to my son that that's why the world is so great because everyone is different and like different things as it would be really dull if we were all the same.

I can understand why you'd maybe not want to tell people. I feel a bit like this with my DD (although not ASD, a different medical issue), but if you are going to leave him with other parents then they need to know, especially if there are things that will upset him or if he needs to be calmed down in a specific way.

I also think it will make no difference to most other parents. When my children have a party I'd be just as happy to make any little tweaks that would make things better/easier for a classmate with autism/aspergers as I am currently to do so for their classmate who has a wheelchair and their cousin who has a food allergy. It's not about defining them, imo, it's about accepting it is part of them.

Any parent who makes it an issue negatively is likely to make an issue with something else anyway imo.

This could have been my post 6 months ago. I've got a 6yr old DS with ASD. I struggled with whether to tell other parents. Some already knew because I've got other DC at the school but a lot didn't. In the end, I didn't make a thing of it - I just mentioned it in passing when chatting to other parents at parties for example. Because it was done casually, most parents then asked me a bit more about him and his behaviours. Luckily I don't have to leave him at parties (parents tend to stay at that age around ours) but I know that most parents would be more comfortable with me staying now that they know about him, so that I can support him if he needs it. Whilst he passes as a shy and anxious child on the whole at the minute, I'm noticing he is gradually showing different behaviours to his peers. I think that it has been useful for us that other parents knew as it helped to explain behaviours that parents otherwise would have wondered about. It all depends on the school, the parents and the children involved - what was right for us isn't right for everyone.

I think being open about it is best, otherwise you may unwittingly be demonstrating to your DS that's it's something to be ashamed of, something to hide from others. Your idea about him not wanting to share it could become a self-fulfilling prophecy, if you teach him it's not to be shared.

I think it's healthier for your child to be open about it than hide it. To be proud of who he is, not ashamed.

My DD has SEN but her diagnosis is v rare. Chances are no one has heard of it and won't come across it again. So I don't tell other parents at school about it, although I don't hide that she needs extra help with academic work and with her behaviour. I think it gives people the chance to see her as an individual, eg A gets really upset about queuing, rather than A hates queuing because she has xyz. We all have difficulties and quirks. Sometimes a label is helpful and freeing, sometimes it's restrictive.

Better that they know than that they think he's just this weird kid. Aspergers is a part of him.

Another voice saying tell them.

When I was teaching I worked with many children on the spectrum and my experience is that parents and other children are more understanding when there is a reason for any "difference".

An older teenage girl with Asperger's attends a group I run and she always tells new members soon after they join. She has learned to laugh at herself and with the others when they laugh at her. This is not laughing in a nasty way, she's very popular, it's their way of telling her to get a grip because she's being unreasonable. It's a standing joke that after the chairs have been put out for the group that they check with her to make sure it meets with her approval.

If they didn't know some of her "oddness" would annoy them. But it doesn't because they understand it's part of who she is.

Tricky one, and the exact issue I am pondering now. DS is 5 and has been just diagnosed as HF autism. At first, DH and I were on the side of it was DS's business and no-one elses and up to him to tell people eventually if he wanted. But, there have been difficulties like people have described... he veers between over-friendly and in peoples faces to needing complete isolation with his headphones on, and I have received several snide comments over the years about my parenting. I have no conclusions as yet, so am watching this thread with interest.

"I have received several snide comments over the years about my parenting"

Yes, that's a good point.

I have a friend who has a son with aspergers. He wasn't diagnosed till very late on.

To my shame, I put his behaviours down to her parenting. I judged her and thought he was the way he was because she indulged and spoilt him as the baby of the family.

I was totally wrong, and discovering he has aspergers has been humbling.

I wish i'd known so I could have made allowances, for her rather than him!

I'm sorry you had to endure snide comments CornChips

When my DD was diagnosed with a condition aged 9 I was encouraged by school n professionals to share with the class as an awareness n understanding exercise. I say encouraged, school tried railroading me as they believed it a good way to proceed.

I didn't n, in fact, have told very few people. My reasoning was that life already judges us n tries to define us, why stick DD in a box. Also, it is not MY body, MY issue or MY life, DD should b in charge of sharing or not when old enough n I take that power from her if I tell the world.

Oh n DD now older n appreciates the stance. She knows it is certainly nothing to b ashamed of n that I am fiercely proud of her but that she is so much more than a condition n isn't defined by one.

I guess it depends if you want peoples understanding more than you want your (your DCs) privacy.

One of my DCs has a friend with Aspergers. I personally am glad we know. She can be very difficult on occasions and has severe meltdowns. I am glad I know so that not only can I support my DC in explaining the situation, but I can also be supportive to the friends mum and be more tolerant myself.

I think if I didn't know I may well have put at least some of the issues down to naughtiness and/or permissive parenting. There have been times when my DC had been confused and questioned the friendship and I have been able to explain and discuss in an informed(ish) way.

When I was (finally) diagnosed it was a massive boon to myself and my peers. I was 14 and it finally gave them an acceptable structure to interact with me. It clarified my status in their eyes - I wasn't deliberately weird or psychologically broken, just neuro divergent. Suddenly they had a basis to predict and encompass my behaviour. The label was for their comfort, not mine, and I could see what a relief it was for them. 'Like dyslexia, but for social skills' may be a lazy simplification, but it really helps other people relate, even slightly. My best mate was diagnosed at 9 and his classmates made aware; his social confidence and comfort is significantly better than mine.

In the end it's up to you and your son, but a label helps other people know how to offer support, even young people.

I would tell.

There is a child in one of my children's classes who has autism. I knew enough to have guessed and start to talk in a vague way to talk to my child about cutting that particular child a bit of extra slack.

The mother turned out to be very open about the diagnosis which made things much easier in terms of being able to explain why x acted differently sometimes and that their brain works a little differently.

From speaking to the mum she doesn't seem to have had any trouble with other parents attitudes to autism. I think it has helped that we all know.

I don't know. I have a child who's in the process of assessment for the same thing. I think everyone knows he is a bit different already, they may well have suspicions, but I don't know them nor do I want his diagnosis (if he has one) to be the first thing they hear about him.

We are quite new to his school. If I was back at our old school I would not hesitate to tell people as they were already my friends and already knew him well.

That's the difference I suppose. But a Dx is private and it is fine to keep it between yourselves. You can always change your mind later on if it feels more comfortable then.

People might think 'autism/aspergers = [insert stereotype]" before they even meet the child which is not going to be helpful. Mine has no behavioural issues really and I don't want him treated with kid gloves and patronised 'in case he has a meltdown' etc. or whatever other behaviour people might expect. It would be very weird for him if they did.

Thanks wiggly. It can be tough.

I think one thing that is holding me back from telling people is that DS is too young to understand himself that he has autism and what it might mean. So it feels unfair to tell others before telling him, if you see what I mean... might sound a bit bonkers but that is how I feel.

People can see anyway that he is 'different'. That bit is quite obvious I am afraid. Thankfully, so far, most of the other parents in his class seem to find his quirkiness amusing and laugh in a 'isn't he funny' way.

Not telling can have a negative effect. The teacher will know, obviously, and will make allowances for different behaviour. The other DCs will perceive this as unfair. "Why can do that, when I would be in trouble?"

They can sometimes take this out on the DC, unfortunately. If they know DC has a specific problem then they can be very understanding. "Fairness" is very important to Primary school DCs.

My 10 yr old son's best friend has autism. There is also a boy in the class with ADHD. Initially nothing was said, but apparently it was causing difficulties and working with the parents and some MH professionals, the school organised an evening meeting to educate the parents on both conditions.

I found it much easier to explain to my son that different people's brains functioned in different ways once I understood the situation. Before that, all I had was my son's description of one of the children continually disrupting, and the other getting violently angry. The school also worked with the parents in setting up play sessions to help build friendships outside school. I guess everyone has different experiences and there is more than one way to deal with things. Maybe as the situation evolves, you will find it easier to know what path is right for your family.

OP How about waiting a while before you decide. Maybe give it a year or two and see how it's going. You will have a better idea as to how his aspergers will present itself and he will have had some more time to mature.

Do you live In an area where you are likely to stay for a long time?

Other people knowing about autism and how it can shape behaviour is helpful to my autistic son, who is at the milder end of the spectrum and in mainstream school.

He can be hypercritical, inclined to kick off, obstructive. I'd rather him be labelled as 'autistic' than just 'unpleasant', and it's fairer as these behaviours are linked to his autism.