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?

its not shameful nor is it a label. Its a diagnosis.

Both of my boys have ASD and I am open and honest with friends, family and with my children themselves.

I agree with many of the above posts.
I think making it a 'secret' can have little result other than to make it negative - a shameful thing about him he should only disclose with trepidation.

I also wonder sometimes if our anxiety about telling people is a little to do with our own grief, our own desire to have our child at least pass as normal - and tbh we can keep putting it as 'normal' rather than normal but we should be honest that tat is what we mean.

My DS is doing work experience at the moment and I was in conversation with a local assistant store manager a few weeks ago about it. He said to me 'ASD can be a real assets if we are honest. I'm on the spectrum with aspergers and it helped me get promoted. The geek shall inherit the earth '

My DS1 and his peers are not thrown, they are immensely accepting.
I understand the need, the desire to protect our children but I feel the stigma will only unravel when we talk about it more. We kind of need to own it really.

I think I'd rather he was labelled the kid with aspergers, rather than the naughty kid or the weird kid.

People make allowances if they know the truth rather than judging on face value. Not right, but it's life.

I have a 3 year old with autism and developmental delay.

I would definitely be open about it. If your child had a broken leg it would affect the way they would be able to deal with situations and you wouldn't just pretend they didn't have it. I view autism just the same way. Just because it isn't a visible disability doesn't mean it shouldn't be talked about in the same way. I don't think anyone should feel ashamed about it.

Pagwatch, there is something in your second paragraph that I think goes to the heart of it for me.

I am reading reading reading about ASD since DS's diagnosis, and am coming to view it a bit like a superpower.

Seriously though, there are so many many wonderful and positive aspects about autism yet the focus seems to be 'special needs' 'disability', negativity etc. THis is all new to me, so I am working it through out loud, so to speak.

DS2 (12) has Aspergers, he was nine before he was diagnosed. My experience is that telling people, including children in an age appropriate way, has been very helpful. DS1 told his friends when DS2 started secondary school, and with this knowledge they made it their mission to keep an eye out for DS2 even when his brother isn't around.

Our family friends know, at a BBQ recently a six year old went off to check on DS2 , chatted to him for two minutes then came back - just long enough to make him feel included but not to intrude on his space.

Telling people has also made DS2 less embarrassed about his Aspergers, which lets him cope better with social situations since he feels he can be himself and isn't trying to hide anything.

Finally, since telling other parents he has had more invitations than when they just thought he was a bit strange.

I think you should be honest. Its easier to accept that a person has a condition and sort of know what to expect, than difficult behaviour or bad parenting.

We are an Aspie family, we're fine. It is part of who we are. I'd tell him, and let him know it can be a real asset, as Pag's post shows.
ASCs really are a huge spectrum and whilst your son is at the milder end of the spectrum, he's still on it and could benefit from the help and understanding that is on offer with his diagnosis.

My parents went with the "not labelling" thing, and it took me until 21 to get a diagnosis. I spent my entire childhood and adolescent years dealing with peers and teachers who measured me with a neurotypical stick, and being known as "the weird kid" was way worse than being known to have SN. I knew kids with ADHD who were in the opposite situation, though, and our peers felt that they "got away with" everything. I imagine people are largely a lot more understanding these days, so I agree with PPs who said "mention when relevant".

My dd has recently been given a diagnosis of HF Autism she is 9 and as she is very interested in what is going on and very open - one of her personality quirks is a desire to broadcast whatever is going on in her life to everyone. She has been the one telling everyone she 'has' ASD - and she has been reading books about it and is probably going to be a great advocate for girls on the Autistic spectrum one day. So I have told people I know - friends mainly, people i trust.

As it is not something I feel needs to be hidden but I think that is lead by dd's attitude - I want to be supportive and show her she is right to be positive about her diagnosis. If dd was younger I would be waiting for her to be old enough to read about Autism and understand herself, before talking about it more widely.

So in your situation OP you are right to be circumspect while your son is young and give him and yourself time to absorb the diagnosis and what it means. My feeling is that a positive and open attitude is beneficial to the child but you have to be ready and comfortable before you can do that. It also depends on the child and you are the expert on your ds.

As far as parties/ playdates - I have spoken to people hosting dd about her diagnosis as I have found she talks about it anyway and it allows me to pre empt any instances of 'quirky' behaviour by managing expectations. DD is generally a very good natured sunny person so when she does get upset it can be a bit jarring - it is better for her if people are prepared.

It's not something you need to rush into OP...you can mention it to certain people that you trust if you like. People are clued up today and may put two and two together.

My children know all about ASD as we have a close friend who is on the spectrum and DD1 has a friend with Aspergers....her Mum told me when she saw that DD and her DD were becoming good mates. I don't think it's "judged" so much today...and anyone who does judge or avoid you isn't someone you'd want to know anyway.

We always operated on a 'need to know' basis and so we told some people, but not others. Our neighbours, for example, don't know as much as the parents of DS' school friends did.

You have to do what feels right for you and your son, and of course that can change as time goes by - you might want to keep quiet about it now, and then find in a few years that it's useful for people to know, so it can help to be prepared for that possibility.

My son was 6 when he was diagnosed with Aspergers. It was a relief for me to give him a 'label' that replaced 'naughty', 'rude' and 'weird'. It was a relief for him too because he was very aware that he was perceived as naughty and had started to internalise it. Most of the school mums understand and have been very supportive and have included my son in parties etc.

But my son had significant difficulties with appropriate behaviour at school, and it sounds like your son doesn't have the same level of difficulty. Nevertheless, I think you might consider the possibility that your son is very aware that he's a bit different, even if he isn't expressing it to you. Even if you don't tell the school mums, you might need to have some conversations with your son about his diagnosis.

... sorry, not to hijack..... Sorcha when did your DS realise he was different? I am hoping to get feedbck from others too.... my DS is 5 and he SEEMS completely oblivious. He is in his own little world. He totally does not understand as yet I think.... we went a few months ago for a weekend stay with an old friend of Dh's and their sons (8 and 10) were excluding him and laughing at him, and he was totally unaware of it. He kept running after them to play.

Broke my heart.

It would be easier to tell people - but I think many people would see him as just being the boy with aspergers. There's so much more to him than that

I don't mind people knowing while he's younger but I feel worried in case DS would prefer everyone didn't know when he's in secondary school. We are working on his social skills - and while I don't expect him ever to be a social butterfly, I can see how much progress he has made. If he manages to improve his social skills a bit and make friends will he always be known as the boy with aspergers?

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

Ds1 is 8 and although not officially diagnosed as consultant thought he had made huge improvements and his aspergers traits didn't have a detrimental effect on his life at the moment the fact that we know his traits means we can deal with them and his behaviour in an appropriate way and other people know his meltdowns aren't tantrums and his rigid was isn't him being spilt and given his own way all the time.
Compared to FIL who was only diagnosed age 59 (as a result of us researching aspergers due to ds1 and basically telling FIL the books were written about him!) the knowledge has made him look at his past and finally understand why things happened. He was an alcoholic and now we can all see it was a coping mechanism to help him be social, if he had been diagnosed much earlier he would have understood why he was like he was and DH may have had a present father for the first 9 years of his life rather than one in and out of rehab.
Before his diagnosis we would think of FIL as grumpy and a bit of a twat if I'm honest. He would have no filter when he said things but now we can understand his need for quiet, and recognise the signs of a meltdown for him.

Talking of boxes and labels and hiding it is so negative. He will have a fundamentally different way of thinking and perceiving things and it's just who he is. It's nothing to be ashamed of. It will be much easier if the world understands and tries to accommodate him rather than judging him for not acting in an NT way.

Of course the ideal would be that the world is accepting of people on the spectrum and so it becomes totally acceptable to admit it and not something to hide. I appreciate people don't want their kids to be some sort of guinea pigs to further autism awareness though. But on the other hand if no one discloses it there won't be acceptance and understanding. I understand the dilemma though.

Dd''s autism is super obvious. There's no hiding it. People see more to DD than the autism though. I'm sure the same would be true of your son too.

Also, sadly, I believe that the type of kids who would tease your son for having AS would probably tease him anyway without the "label", just for having unusual behaviour. I think an explanation would be more likely to reduce the teasing.

My dd is also clearly 'different' and the diagnosis has been a revelation for her and something she has embraced - without it she was anxious about being different and could not understand why - so I can only speak from our experience - I do understand wanting to shy away from labelling a child. But I see it as being a characteristic - one of all the the things that make dd who she is but not - all she is. She is also a tall person and a good reader and loves singing, hates maths and can't lace shoes. Those things don't define her either.

So as she is going to have to deal with feeling slightly at odds with the world all her life she might as well be able to understand why and find some strategies to make her feel better about the world and her place in it. If other people will be more helpful and better informed by knowing about her diagnosis then I will not hold back the information out of a desire to protect her. She is best protected and supported by being understood. In most situations.

Also, sadly, I believe that the type of kids who would tease your son for having AS would probably tease him anyway without the "label", just for having unusual behaviour. I think an explanation would be more likely to reduce the teasing.

In my experience Fanjo is totally right. Nasty DCs will be nasty if they want to be and will find a reason to be. Most DCs are lovely and can be very supportive and sympathetic.

To be honest, I think that it is MUCH MUCH easier psychologically for someone if they know right from an early early age about anything that's unusual about them. I say this as someone who has two medical conditions, one which I knew about from toddlerhood, and one which wasn't diagnosed till I was a teenager. The first just feels like an integral part of me, the second is a much more complicated issue for me psychologically.

So in your place, I would talk to your son about it little and often, just in minor, passing comments. I do this about my own conditions to my DC, and they're a completely normal part of life for them. Not something I will have to sit them down and tell them about one day.

I think that fear of a label comes with a feeling that the label is somehow shameful. As a parallel example, adoption used to be something that children were 'told' at a certain age (or never told and found out to their shock when they were a lot older.

I think there are different issues being discussed. I don't see why keeping a child's dx 'semi' private means that the child will then see it as something to be ashamed of. Lots of adults keep health issues to themselves - it's a personal preference.

The problem with letting everyone know is that it will follow your son around for always and people will make assumptions about him based on the label and not on him. By telling a wider group of people than nessesery you are removing his choice to keep his private medical information to himself.

I don't think you can predict how it would effect him as a teen. It may or may not be beneficial for his classmates to know. That's why I would withhold telling everyone for a few years and see how things go. He is only just 6. His Asperger traits may become more obvious or less obvious as he gets older. He might be a child who embraces his traits or he may be someone who wants to suppress them and to appear NT. id imagine it would be hard to know how it's going to pan out at his age considering that you say he is 'almost normal'.

I think kids can be very tolerant. My DC are adults now but were all firmly in the geeky maths/chess 'groups’ at school. There are plenty of quirky kids about.