I dont want anyone to know about autism dx...rant from hell!!!

[LunnyTunes]

Am I being silly?

My brother told his teenage kids/new girlfriend ...who the hell else has he f@@king told that my son has autism (dx 3 yrs ago)

I dont tell no one not even friends know...in the hope that I can get him up to the best he can without being judged in this 'if you got autism you dont fit in' in this society! Dont argue they do cause here you read all the time...teachers/professional/friends/other peers problems...we wouldnt need support groups like this to pour our f@@king hearts out to if all was dandy!

I have opened a can of worms but dont I have a the mum have a right to confidentialty for my child. I'm devestated and extremely

Oh there is another aspect- if something doesn't go well and soething happens at school (and asd kids can get aggressive etc) then you can get in trouble for not disclosing on the forms, it also strips school of their responsibility to protect the mroe vulnerable: its not the DX that makes you that, but the ASD.

Also- depending ion the case of ASD it'snot necessarily a LD- here it is classified as a Psychological Disability. LD only applies if the IQ is below quite a low point- ds3 for example has an average IQ but no DX of LD despite the fact that his actual operational IQ is often farlower due to absences, stims and obsessions- the LD DX is an absolute despite that.

if a child has an LD then there is no pint trying to hide the DX, something will obviosuly be going on.

LOL I'm of a very similar view. I just don't want the OP scared off when we are one of the few people that she has actually told who she can turn to for support etc.

x post simp I'm very interested in the whole LD issue. He can't have a statement here unless he has a LD, so for those purposes he does. He has to have challenging behaviour for DLA. Well he is a challenge, but his behaviour isn't what most people understand as challenging.

It's all a bit of a circus!

'He can't have a statement here unless he has a LD

blanket policy,off to IPSEA with it now please

For DLA his needs ahve to be bubstantially different from those of a child his age with no SN- ahrd to prove with littlies yes often as they still need care, but easier as they age- mine started to get it at school age IIRC

"He has to have challenging behaviour for DLA."

My ds1 gets higher rate care component of DLA even though he is well behaved at school etc. The big difference between him and NT children is the amount of work that goes into getting him that way. So things like having to remind him to go to the toilet, change his clothes if he wets himself (he's 9), explaining in advance what's going to be happening etc all go in to his DLA application.

Someone once described it to me as like watching ducks on the water. They look as though they are gliding along but if you look under the surface you'll see they are working like crazy to move.

I think this is very sad.

Op - is it really society's non-acceptance you are fighting? Or your own?

Everything in your posts point to you wanting him to be "normal", and that to me just screams that you have not accepted that your ds has autism, and that you are in denial about it in fact.

It is true that some elements in society are not accepting of those with disabilities. However it is also true that society will treat anyone who is different, differently, and if a child's differences are not defined by a diagnosis then society will apply a label of their own, ie that your child is naughty/horrible/. So by denying your child's disability to society you are in fact setting him up to be judged as an individual, rather than to be accepted in spite of his disability, iyswim. e.g. an autistic child who hits/kicks/punches/screams/tantrums will be understood by many people in society (and yes, I concede that not everyone is tolerant). But a child who hits/kicks/punches/tantrums seemingly for no reason will be defined by society as a violent little thug, with no understanding of the route causes of the behavior.

Tbh I think op is in serious need of some professional counselling to help her come to terms with her child's disability. Only then, once she has accepted that he has autism, can she accept that he has a place in society, as the person he is, not the person she wants society to think he is.

'blanket policy,off to IPSEA with it now please'

LOL, - yes but a child with autism is ALWAYS classified by our LEA as having a LD so not sure what I could complain about, and ipsea have confirmed to me that my LA receives more complaints than any other authority.

Aren't we all in denial to some extent though, - or at least fantasise about our children living as fulfilled an adult life as we can possibly manage to set up for them?

I think we all strive for our children to lead as independent lives as possible, and to achieve the best they can even with disabilities (and achievement can be measured in personal progress not just academic progress). I don't think that's denial, I think that's wanting your child do do everything within their own capabilities.

But refusing to admit that the disability is even there at all is complete denial. So how will the child feel when the parent wants him to achieve everything a non disabled child can, and his disability prevents him from doing that? But because she denies he has a disability she doesn't see that?

Well, folks, if you hadn't scared this lady off already, you sure have now.

I actually think that's a little unfair lingle. I think we all see these things from our own particular viewpoint and I think that those who are challenging the belief that it is possible or preferable to try and hide a disability (if it affects a child's daily functioning) are doing so on the basis of their own heartfelt experience.

They are not trying to undermine the OP.

You don't have to agree with someone's actions to want to try and help them.

I think that the most important thing is for someone with ASD to be happy with themselves. If everyone talks about ASD as being something to be "hidden" then this will make someone with ASD feel that there is something "really bad about them" and that they have something to be ashamed of. If you just focus on the fac that they are "differently wired" then it will be easier for them to accept and the main thing is how your son learns to cope with loving himself.

I can understand that you do not want anyone to treat him oddly but if eveyone understands the dx them hopefuully they will not but at least your ds will feel that he has nothing to hide.

I'm not saying that ASD is easy - either for the family or the person with it - just that it is nothing to be ashamed of.

I can see both sides of this arguement. My MIL insists on telling everyone and anyone that my Son has Autism, it pisses me off. However I dont want my son to be embarrased of his condition like it is some kind of secret.

I suppose I want people to know who's business it is, the same way I would with any other of his medical conditions, such as his asthma.

Presumably the school do know though? I agree with marioandluigi - that I can understand the OP wanting disclosure of the diagnosis to be on a need to know basis, and feeling that's fairer to her DS.

saintly - apols if it's a nosy question - but how did your DS indicate to you he knew about him having autism? I thought we had a moment of awareness with my DS last week abut his language problems - he said he wanted to be Dopey in Snow White as Dopey doesn't speak(!)but then when I asked DS if he found it hard speaking sometimes, he said no, he finds it easy

There is no shame in autism - shout it from the hills. Till we stop hiding away, how is society ever to get more accepting and knowledgeable about autism? My boy was born with autism, just like my girl was born with brown eyes. I don't judge anyone's choices, but I think the days of hiding away a disability are long gone - it's actually now enshrined in law that disabled people should be treated equally to all others. I've just submitted an article for our school newsletter, explaining in simple terms what autism means (no-one really knows) and also explaining about my boy. I am proud of him. He has to overcome more obstacles every single day to just walk into that school than do the other 300 kids.

That said, the OP's family sound like a bunch of c*s , so I think there's different circumstances going on.

I tell every adult (and quite a lot of children) that ds has autism

It isnt something to keep secret or be ashamed of

Most of the time I celebrate it because it is who he is

If he is with people who dont know they often wonder why he is ignoring them and think he is being rude - I would prefer them to know why he is as he is

i notice that the OP hasnt been back

I think its sad that it seems that she hasnt come to terms with her sons Dx, and its even more sad that she now probably feels that she cant come and offload here.

Incidentally, IME telling people IS difficult, even tho ive come to terms with DS5's Dx, you never know what sort of reaction you will get, ranging from pity to embarrassment. The better end of the scale is either surprise or a factual acknowledgement of what you've said.

LIW, that's how I feel.
But it's a personal view I'm about to give, tempered by the fact that I have also had to work with parents in denial about their child's specific needs and how best to help them.
And those who see any dx as shameful and a secret tht needs to be kept. They are entitled to their protectiveness, but it is often not in the best interests of the child.
I fought long and hard for my son's dx, he has no learning difficulties other than the AS and it seemed difficult for the 'experts' who knew what the signs of and ASD were to cope with someone who didn't fit any preconstructed box.
Being open about his dx has enabled him to participate in so many things with a little reasonable adjustment and altered a lot of people's opinions on his interactions with them.
He's Y10 now and has blossomed and grown in an open environment, talks about finding some things difficult due to the way his brain is wired, but sees the positives of his AS as well, and the talents and abilities he has.
He is comfortable with himself, and being himself.

"one day he will be normal"

If you can't accept him, who will? And how can you expect them to? Disability isn't something to be ashamed of. Yes, he will probably come on leaps and bounds with the right help, but autism is lifelong and you don't know what's ahead.

Sorry, I didnt mean to sound negative with my post. What I was trying to say is that my MIL announces to people he is autistic, such as people she meets in the supermarket who she doesnt know from Adam, that annoys me.

But I am certainly not embarrased of his Autism, its who he is. What embarrases me is peoples reaction to it.

OP, I hope you do come back. I know a lady who's son has Downs and she is very much like you. Doesnt want help or support. She is dealing with it in her own way which we all must do.

Thank you for your replies positive and negetive. I am neither sad or judgemental and believe we all have our own views and thank you for them.

I am sorry a lot feel angry about how I feel...but "autism" has caused my life to fall apart. I cant cope with the fact that people see the 'label' infront of my child and he is seen as the child with 'autism' and not the child with 'beautiful eyes' ...the label goes in front of him.

The dx has only stopped him from achieving due to the main institution (school) whom he was the first ever child they had with autism, treat us like aliens . I am sick of him and I being judged.

Yes I agree it might not work out as planned but I will keep trying to achieve "compliance in society". If it doesnt work out I will cross that bridge later, but until then I will carry on.

Ladies a lot of you are very strong women but I feel beaten by the lot; system/society/law/institutions and dont have the strength to fight so go girls

I wish each one of you the best in your journey with your children x

I can understand the label before the child thing and your concerns there - I'd just be concerned that he knew really, so it doesn't come to him from elsewhere (and because every HFA person I know has said they wanted indeed needed to know).

TC- well he watched intently when I showed him a video of an autistic child typing (then typed out his name and pointed at the screen) and previously sobbed his heart out when I said something about 'it would be easier if you could talk'
but the clincher was a few weeks ago.

I was watching something about Prince John when ds1 came skipping into the room. He never watches TV, never pays any attention - not even fleeting (unless it's teletubbies). Anyway I said 'Oh ds1 the boy on the TV is autistic' and he stopped mid skip/sing came and sat down next to me on the sofa and watched transfixed. He's never done that before- usually I have to bully him into attending to something I'm directing iyswim. But he was only transfixed on the bits where the actor was playing Prince John. And when I said 'where's the autistic boy' he pointed. The he kept pointing at Prince John and looking at me - and well it just seemed that he knew he was autistic. :big surprise:.

Blimey MrsT - that's amazing!

I was somewhere around stunned sphil
But exploring a bit more I am surprised by how much he is understanding now....

God Lunney Tunes, where do you live, it sounds like they are in the dark ages if your child was the first the school had ever heard of autism! There was even an autistic contestant on X Factor last week (he got through to Boot Camp)! We all have to deal with it in our own way, and I don't even pretend I am glad autism has come into my life - I would most certainly prefer my son to be normally functioning. It has made all our lives very much harder than a "normal" life, but what can you do except get by the best you can and not one of us would judge you for doing it the best way you can. x