Keeping a diagnosis secret or letting it all out?

[ihatecbeebies]

I'm currently going through the diagnosis process with DS just now, he has just started primary 1 and we think he has AS, developmental dyspraxia, there are talks of ADHD, and he has also has a communication problem. He is a lovely friendly boy but has difficulties in school and may come across as a 'naughty' child.

When I discussed the possibility of the other children in his class finding out about his difficulties the HT said that other children throughout the school differ in whether they have told the other children in their class or not about their dx, some prefer to keep it secret and others prefer to tell their class.

I was wondering how other parents and their DC cope with their 'invisible disabilities'. Do you find it better to not say anything about dx to anyone or have you and your DC found things easier to talk about it?

Yes I'd make sure my DC knew all about his dx before the other children in his class knew. I feel bad for ds though when I overhear other children in his class call him bad or scary etc as it's not his fault. The educational psychologist said that one technique she sometimes uses is reading a class a book called sixth sense, all about how we've 5 senses and the 6th sense is your social sense but some people struggle with their social sense and this helps the other children to understand why some children in their class may behave the way they do.

Forgot to add sorry, he's only 4 just now so is quite a while away from understanding, although one woman I know (a friend of a friend that I talk to online) has a DS the same age and she has taught him to say 'I'm not bad, I'm autistic' as he is called a bad child etc by others for his behaviour.

My view is while it is noboby's business, it depends more on whether it will help or hinder your child. My DS is obviously different from other children, he flaps and spins etc, but he's fairly able academically and copes fine in MS with a statement. I found it was better for him to be upfront about his SN with the children in his class initially and then those parents who were friendly. The children were given an excellent age appropriate talk about invisible disability and they became very tolerant and even protective of my DS. He is blissfully unconcerned about his ASD, so that probably has a bearing on my decision.

If your child is more likely to be able to 'pass for normal' in school then I think it may not be such an easy decision. I would be more reluctant to advertise any issues as there is more potential for bullying. My DS is so noticeably ASD that I preferred people knowing rather than labelling him as naughty. He has only ever been bullied by DC who don't know about his ASD.

DS is 6 and has dyspraxia, SPD and will hopefully next month get an AS dx. We plan on telling him to help him understand himself....(he already knows about the dyspraxia). It will then be up to him to tell if he wants to. However if we have problems with other children then I will go with EJ's suggestion of the school or the autism teacher doing a class on invisible disabilities.

I, too, hate those logos, PipinJo! And I agree that the 'bad boys' were the ones I fancied. More fool me to have married a 'safe' one, who turned out to be as unreliable as the more exciting 'bad' ones!

That was a bit off thread, sorry!

Still off thread......I married a "bad boy"! Imagine my mum watching her midway through her Russell Group uni daughter coming home with a barman who she has just found out after 15 years with no qualifications.

But was he exciting, Ben10?

OH YES [GRIN]

WHOOPS

So exciting you went all caps lock on me! Lucky you!

Although ds2 is unable to understand he had asd, he brother is very aware. I had a similar issue yesterday while at my nans house, my cousins kids where there 5 and 3 and where doing the usual boy stuff, paper planes and rolling over which ds couldn't do. The 5 year old C asked his nan 'why can't X do a roll over and I can' to which his nan answered 'because your lighter' . I know ds is a bit over weight but I was quite annoyed at that. So I said to him 'You know X still has dummies and can't talk, well it's because he has trouble doing things that you and your brother do'. C goes to a school with an asd base attached so I just explained that ds was like the children in Mrs Joneses Class (not me) and he was happy with that and carried on playing.
I suppose what I am saying is that if you want to let people know then it is best to tell kids at what they can understand.
I personally have seen both sides, ds1 has adhd and I have always bee open about it and I did find it helped as the children in his class and the parents, well most of them, knew he wasn't just a naughty kids, but there was a boy in his class who was branded as a little nightmare who's mother did nothing about his behaviour, when he was about 9 I found out, by accident that he had asd but mum didn't want anyone to know, I didn't tell anyone else but felt so sorry for him as other parents would talk about him and complain about him to the teachers, some even shouted at him themselves.
In the end it is up to you what you do but I thought you would like to know my experience of telling and not telling.

Clearly the excitement level reduces dramatically over the years .

However we think he is dyspraxic and has ASD traits, definitely a naughty boy at school who disrupted the class and a naughty boy at work with numerous disclipinaries but was/is the most popular person I know.

I am in two minds wether to let the teacher inform the children or not. I dont like him labeled as naughty, odd, wierd etc but to be honest it hasnt had any effect on him at all. And to be honest there is a whole playground full off NT kids that are wierd or odd to him

He is only 6 and we are still hunting that defined dx or dxs to actually know whats going on. He is too smart for his own good and I could see him using it to his advantage at home with the "I cant help it because..." and also use it at school to avoid situations or pull the sympathy. I want him protected but at the same time I dont want him to use his dx as an excuse for not trying harder iyswim.

Oh and he can be naughty tooo

I think I will wait till he is more mature himself say around the 9 to 10 mark. There is more peer pressure and more pressure to fit in then and be the same as I have seen with my DD. If there are still more pronounced differences at that age then I will speak up and get the class talks going.

DH and DS are very similar but DH was significantly more naughty!

I don't really get this 'invisible disability' thing. If it was invisible, then the child wouldn't get the dx. Therefore, it is visible. The only difference then is if people call it 'naughty' out of ignorance. But, to be fair, if people are ignorant, in the true sense of the word, then they can't be blamed for thinking that the behaviours which attract a dx are 'naughtiness'.

I don't go around with a placard for DD1, but to be quite honest, anyone who saw her would know there is 'something different' about her.

Lougle, the difference is that someone who is physically disabled is 'visibly' disabled to a child (or an ignorant adult) so the children in their class are introduced to the concept that some people have disabilities that don't require a wheelchair, or splints or even glasses. Disabilities that cause them to behave in ways that children may find naughty or scary or weird to use some of the phrases used by the children up thread. Until my DS behaves oddly nobody would know he had a disability. Sometimes his behaviour doesn't look odd, though, merely undisciplined and unpleasant. If adults can't tell when a child is disabled or just plain rude, then children don't have a chance.

The talk that the autism advisory teachers gave to my DS's class when they were 5 or 6 completely changed their attitudes to him. It improved his experience at school immeasurably. He was suddenly invited to more parties as consequence and even on a few playdates when before children had avoided him. It wasn't a magic wand but he was never bullied by his classmates, occasionally by older and later younger children who didn't 'know' him, but his class always stuck up for him.

My sons disability is invisible to the human race at a glance which is why children call him odd or wierd. He walks to school like everyone else (albeit steadfast on the way we go and what he has to stop touch or balance on to get there) He looks exactly the same as the kids in his school till he cannot cope with the crowds or the writing then he turns into batman or ben10 or a soldier with a gun and shuts out everyone and everything. Now to the child that is naughty, to DS he isnt there so it doesnt bother him as long as he doesnt have to communicate he is happy, if stopped he becomes aggressive or runs. Or they dont understand the fact that he screams......just once every so often without reason to them but to him its keeping him in his seat instead of running off a new just as inappropriate coping strategy to him.

Sat with the TA no one would know anything different until you look up close and find his eyes are rolling up in his head. Children call it funny faces at school.

His eccentric speach is 'cute' to most of the general public, till they realise that he wont stop talking or asking questions till he has fullfilled his quest to know everything about the adult down to his shoe size

If DC are different enough for the autism to be visible and other children get to know DC, why on earth would you not be open about the diagnosis?

We understood we introduced DD to the idea that her brother was autistic from the age of four. She understands in a age specific way. She also talks/explains about it to her friends if they visit and DS is being odd. For this reason I don't know why we assume that 4-6 year olds can't understand that someone is different and may need their help and patience, they can.

I tend to find the more open I am about his diagnosis, the more tolerant people are. It also weeds out the people who aren't worth your time quicker.

I have always been very open about my sons autism because well hes just so loud and hyper its not something you could hide.I founnd at school this helped because parents started to be kinder to me instead of avoiding me and my "naughty" child.
I never felt the need to tell the children because i left that up to their parents and i was really shocked at the positives that came out when the parents knew,if the children were a bit scared of him the parents really made an effort to explain all his positives and the kids started to warm to him amd vice versa.
However would i have done this if he was more high functioning i dont know,because for one i would have had to take his opinion into account and two i may not have seen the point of needing to .

I am open when needs be ie yesterday when he yelled at two people. All they did was tell a gull to get lost as it was after their dinner on the beach. DS took it personally that they were being cruel to the gull and went into a huge lesson on animal cruelty and that the bird was obviously hungry and we shouldnt let animals starve. Then realised that I was on the other side of the beach as he had marched off without thinking and screamed the place down and then yelled at them for making him lose me (I was 10 ft away )

I am not open in the playground as the mums there wouldnt believe me if I even explained anything. DH has a lot of friends and so did I as in knowing the wives, till he was open enough to trust one and mention the poss of DS having autism. Havent had one hello since, so I dont see the point if the parents are so negative it wouldnt even matter if the kids understood or not as the invites still wouldnt be there lol