What do you tell other parents?

[debs40]

DS has just started Y3. He has some good pals. Most of the parents don't know he has AS. I have just explained away 'odd' problems as 'hypersensitivity' when I have to.

Today, one of his pals invited him to go and see a football match with his dad and grandad. It is a Championship team so quite big and they are based about 40 mins away.

DS has been to see our local non-league team play several times and enjoyed it.

Of course, DS is sooooo excited and I am pleased for him.

I just didn't know what to tell the boy's mum and dad.

I tried to speak to the boy's mum in the playground but it was quite difficult. She is from Mexico and her English is great but not fluent. I think it is hard enough to explain to anyone!

I just warned her about possible sensory problems (smells and food) and his anxiety at new people.

She looked a bit taken aback and I had to reassure her that he would almost certainly be fine.

I then wondered whether I should have said anything but I kind of felt I had to as it wouldn't be fair on them if he got upset and they couldn't work out why.

What would you have done?

Thanks, Star. I do want him to try and take control of this as he gets older but if I asked him, I know he would say, at the moment, don't tell anyone anything, there's nothing wrong with me.

He has matured this summer but this has also meant that he has become much more conscious of difference and very reluctant to be seen as different, no matter how positively you try and spin that 'difference'.

He will say 'I'll be fine, smells won't bother me, I won't get anxious' but the truth is he might......aaargh!

I'm scarred by one incident when he went to a child's for tea and then ended up shouting freak and weirdo at another little boy that was invited in (who DS didn't know). I then had to explain retrospectively and the mother was a bit annoyed that I hadn't given her some warning as she would not have invited the other boy in.

Tbh I would have done the same as you and spoken to the parents too. I think you have to - for your ds's sake and the other family, as if he does get distressed they would need to be able to do what they can to help.

Is the other boy's dad English? (Or is his English any better than his wife's - would he understand a bit better?)

Could you give them any basic advice/tips about what to do if he does get anxious?

I hope he has a brilliant time

Thanks, yes, he's English and I said I would be happy to speak to him as he is the one going.

She says he will take my number and will call if there is a problem.

It's such a difficult line - I don't want to 'out' him but equally a bit of preparation can save a lot of hassle.

I've tried to stick to 'needs' rather than labels e.g. he is very sensitive to smells rather than 'he has Asperger's'. I mentioned AS to his mum and I think I just confused things further!

It's great he got an invite.

You did the right thing talking to the mum. She'll hopefully twig once she spends some time with him. He may articulate it well to her considering her fluency in English.

Trouble is, I think with AS, if you explain it as austism then people hear the autism word and expect Rain Man...

It's lovely he's been invited, you're right to say something.
Does your DS know he has AS?

It is tricky. I don't think that disability should be hidden, and I've already fallen at the first hurdle by presuming that you consider your DS to be disabled. You might not. You might just consider him to have 'alternative wiring'.

That aside, what I AM sure of is that I am very uncomfortable with the idea that other people know about a diagnosis and the diagnosed does not. I know that my DD1 was not able to understand that her brain is malformed, yet my friends had explained to their children that my DD1's brain was a bit poorly, so she does certain things and acts younger than she is. That left me a dilemma, because her friends knew more than she did.

I suppose what I am saying is, that if your DS isn't ready to know that he has an ASD, or to accept it, then perhaps it isn't unreasonable to talk about the reactions he may have rather than the cause of those reactions.

But I don't think it is helpful, personally, to perpetuate the secretive nature of disability discrimination by allowing a diagnosis to be a 'dirty secret' either.

So, to summarise my rambling thought process, I suppose I think you have got it about right

I know that I am choosing to start explaining to DD2 (3.0) in a very low key way that 'DD1's brain can't do that' or 'DD1's brain doesn't do it that way yet' when she notices that DD1 isn't able to copy her. For example, jumping. DD1 just can't jump off of something yet, and DD2 was saying "No, DD1, like this...", so I stepped in and said "DD1 can't jump yet, DD2, her brain can't do that yet." My hope is that DD2 (and DD3) will come to learn that DD1's brain condition is normal for her, and will just learn what she can and can't do.

Spinkle, that's it exactly. Even though they know him, they will see him differently. She has done some work in the school as a parent helper and knows he is shy and she knows (from his visits to the house) that he can be fussy about food. I thought I had better flag it up more formally - i.e. if someone sits next to him with a burger and he gags, best to move him as he can be sick!

DS does not know about the AS. The core of most of his issues are sensory based and he has a co-morbid dx of SPD so I have told him about that to explain his difficulties.

He said to me on Monday that he didn't want to have super-sensitivities and wanted to be like everyone else so I told him about his brain processing things differently and how this is the case for lots of clever, sensitive people.

I will tell him but I think it might be a step too far at the moemnt.

Lougle - x-posted! I agree with you.

I don't see it as a 'dirty secret' either but I think it is his private business and so it should ideally be his choice whether to tell people.

However, he isn't quite there in understanding it all yet and I don't want to damage his self-esteem when he is so sensitive about difference. I will take it carefully with him.

I suppose I have just tried to explain to others what he knows and understands about himself.

He will say he does not want me to but I also know that he worries when people don't underrstand and panics at the last minute before outings when he is not sure how he is going to deal with any problems. So, I have to learn that there are moments when I will ahve to make that decision and warn people of problems in advance to avoid possible distress.

DS likes watching The Incredibles cos Dash's super power (incredible speed) is a bit like ADHD. I'm hoping that he'll one day be able to get the subliminal messages about particular talents, being happy with who you are, coping with stigma, occasionally needing to pass for 'normal' and ignoring discriminatory people.

Trouble is, the asd traits might delay his understanding of those bits! Currently he knows about the ADHD, as do several of the class parents. Only the senco, teachers and a trusted few are aware of the asd features, though partly cos the dx is not yet confirmed.

I love The Incredibles! Sadly my boys have moved on and no longer watch it...

I was going to post a long message about my experiences with ds2 (not on the autistic spectrum but definitely with sensory issues and lots of ADHD-like behaviour) and also ds1's friend who is on the autistic spectrum. But it would have been too rambling and with no particularly clear message coming through.

In the end I think it's just hard to know how much to say - too much and you put off the poor parents and our kids never get invited round again, too little and the poor kids end up with experiences that are very difficult for them and they may also never get invited round again.

Also ds2's epilepsy makes it easier in a way, as he clearly does have a brain that works differently, so it's an obvious way to explain what's going on with the sensory processing too.

For us, it helps that the school have implemented many of the approaches our OT recommended, so for example when a child from ds2's class came home and saw the MovenSit cushion he knew it was to help ds2 to stay sitting down (for dinner) as they use one in the classroom too. It may be that your ds's friend is quite aware of how to help your ds and will educate his dad too.

Well done for the invite and I hope your ds has a great time!

I'm always quite open, i would rather parents ask than have them talk behind our backs.

Not many people ask about dd1 (as), i think they just assume she is a very bright but highly strung (and grumpy) child. . Dd1 knows she has AS so has probibly told most of the school all about AS.

Dd2 has started school today, luckily most of the parents already know her (as i have been taking her up to school with dd1) and they know she has ASD. I'm not as bothered about people talking about her (i would still prefer they ask me questions) because dd2 doesn't care/notice if people are talking about her. All the children will know she is different as she has full time 1:1. She's one of 5 children starting reception and 3 of them have SN's so she wont be singled out as much.

I do tell parents if dd1 is invited to a playdate but this rarely happens and is usually an invite from a parent that already knows dd1 has AS.