To wish that there was a cure for ASD

[pigletmania]

Before you flame me, I have a dd 5, with possible ASD (waiting dx) and developmental delay. My goodness its hard for her and us. I really feel for her not being able to participate with other children due to her sn, trapped in a body that does not work. I have seen glimmers of what is underneath and know that she is intelligent, funny witty but her difficulties get in the way.

She goes to a MS with a statement, and since ds (3 months) was born she has found it hard to adjust, and bites and pinches as she is not able to express herself. this has happened at school where she has bitten hard her TA and other children, and now according to her class teacher other children are scared of her . We went to a meeting on Friday, in which we were told that the school did not have the recources to cope with her and that we would have to look at more specialist provision, thus leaving children and environment that she is famliar with. I just feel so , I would give anything for her not to have this, and to be like the other children.

Afterwards my dh did some research and found that a gluten and dairy free diet can help significantly which children who have Autism, so much so that they are 'cured' we are going to try this, and keep and open mind. I would love it if it did work and so thjat she would be like the other children.

Yanbu but it does get better or at least it did for us. When dd has a melt down at school turn it back on
Them and ask what the trigger was and see how it can be avoided. For example she probably doesn't bite or throw or hit to be malicious it is more likely anxiety, fear and frustration.
Ds managed much better in ks2 where his day was more structured. He also had teachers in y5 and y6 whose classroom management and understanding of his needs were fantastic.
At 8 we went to visit and were seriously considering special school. He is now in y10 in higher tier for most subjects.
I suppose what I am trying to say is look at all the possibilities and don't be afraid to question the way in which the school could minimise / eliminate the known triggers.

Gurl.. my son is very similar.. he's 15, has ASD and learning difficulties.. unlikely to have a proper job or his own home or a family.. but wants to, as he has no concept of his own limitations.

BUT he wouldn't be who he is without his autism.. his autism defines his personality, his obsessions his amazing (but not useful) memory skill, his acceptance of everything and everybody just as they are... that is his autism.

I'd never want to change HIM, but I would wish to change the world to make it more accepting of him just as he is..

ASD is so sad and if there was a cure I would be the happiest person on earth, since my step-son's ASD is the primary cause of my impending divorce.

Whilst there are certain ASD traits that can be seen as positive - noticing patterns, savant abilities, seeing things from a wholly different perspective - these depress me further since, in isolation, these skills help no-one if the child has absolutely no social ability or the skills to get through day to day life.

I know if my own biological child had autism I would love them. But the bitterness and anger I feel towards my step-son's autism has destroyed my marriage and I do not understand why, what purpose, it serves. The times I have longed for a step child with another disability that doesn't affect what I take for granted - normal interaction. I have wished that my step son had been born with Downs, or was physically disabled - anything that would enable normal social interaction. Anytime I see a boy of a similar age, laughing, chatting to friends and family, playing, skateboarding, playing football or cricket, I yearn that my step son could be like that.

Apologies for the negativity and I don't want to cause offence - just venting

freckled . I don;t think that the school are doing enough for her, and managing the classroom as affective as they should. i feel that they dont really want her there and are using the biting as an excusue to get her out under the guise of 'doing what's best for dd'

YANBU and YABU, I am torn, ASD is Ying and Yang, the good comes with the bad.

Medusa, best wishes to your family and your son in particular. When I look at how far our son has come, it is amazing.

We were told he would never learn to walk
Never learn to talk
Never read
Never write
Never stop clinging to me
Never do anything on his own
Never have friends
Never have a job
Never stop BF!

He has done all of these things and more. Who knows what the future might bring for him. Yes, he does drive us nuts almost every day, but these thoughts sustain us.

Best wishes to all parents of DCs on the spectrum x

yes thanks for the post hecarte, its great read all your stories and helps not to feel so alone.

googlenut You can find all the groups involved here:

www.eu-aims.eu/

In ME/CFS research they have found a drug that improves the sensory problems, ?A lot of the symptoms appear to be related to nervous system defects,? Mella said. Fluge said those symptoms suggest some nervous system filter is missing, ?resulting in massive sensory input? and they have found a drug that helps with this, so perhaps one day something similar can happen for the sensory problems in autism.

So bullet are you working on this project? Go on tell us the inside info

YANBU, but from my perspective, a lot of the things I like about my ds (he's 5) are down to his ASD. I have to be honest - when I see NT little boys his age I don't like them, on the whole. i couldn't wish ds was like them, much as I'd like to get rid of the difficulties of his condition.

I'm not directly working on this one, just loosely involved. It's only just starting so nothing to report, all data will be in the public domain.

ive still got very mixed views on this one, there are certainly aspects of DS behaviour that are purely down to his ASD that i would alter if i could, but there are other things that i wouldnt.

and i look at people like
Temple Grandin i love that her book is called "different, not less" and
this list and they are amazing people and i think that the world would be a poorer place if they were not as they are.

Einstein was meant to have had AS.

i know its a huge spectrum, i know that its hard, but i think for me, now DS is 20, things are better and the amount of help he is entitled to at Uni is fantastic. We have got to a phase in his education where you no longer have to fight tooth and nail, which makes a refreshing change.

Im not sure that the world would be a better place if a "cure" were found. AS runs in our family. My nan had it, she raised me until i was 7, and she was a wonderful "parent" and the most talented woman i have ever known, so many talents, she was a seamstress and could make anything you could draw, she made her own patterns from greasproof paper, she could knit, crochet as well as sew, she was the most creative woman and an inspiration. I loved her more than any one else in the world, and she had no sense of "odd" so i was allowed to do the most outrageous things! things that most children would get told "no" if they asked!
she was fab.

and very very very very aspergers!
as is my boy.

Yes. But tbh these all kind of prove my point.
When your asd is a facet of your personality and brings both gifts and difficulties then I would be more able to embrace it.
But my son has very few things that enhance his life. Most of the asd partsof his life close him down, give him pain and frighten him.

I remember reading stuff on an aspies site where, quite understandably, people with asd were raging against 'cures'. But my sons difficulties are so profound thatt his ability to access even things he loves is hampered and his ragged fingers and the bite marks on his hands are testimony to the anxiety that swamps his life.

He also has no capacity to live an independent life and will be at the mercy of care homes and the kindness of strangers. He does not even understand the concept of death so 8 years after my fathers death he still does not understand where grandad is.

So when I die he will just think I left him alone.

Yes. I would change that. I would take a cure thanks. I can manage his behaviour but I don't think his life will be much fun when he is my age.
I think if he could ask he would take a cure too.

My DS is 17 and has improved a huge amount. His learning support at College told him that if he didn't tell people he had ASD they wouldn't know.
But we know. The effort that goes into fitting in, the things that come out at home, the "pressure cooker" effect when he's had a bad day.
I don't think it does go away, they just learn how to adapt better.
Incidentally this morning he said to me "I hate being autistic".
As someone else said, it is like a stick of rock and no matter how much they adapt it is there at the centre.

That's great jandymac.
But ds2 is nearly 16. We are still hoping for improvement but I think he is pretty much the adult he will be

It depends so much on how disabling the autism is for your LO, I think. I feel really lucky that my DS is not mildly autistic enough to be upset by his differences. He is happy as he is, most of the time, and doesn't care that he is different and has no need of friends (in his opinion.) He isn't particularly anxious and his autism has positive as well as negatives in that he wouldn't be the same person at all without it. He's not severely autistic either. He's in MS school with average IQ.

But that doesn't help those for whom their LO's autism causes great anxiety, great confusion and makes them very unhappy with how they are and who they are. And that may be the majority as far as I know.

If I could go back to the end of the first year of my DS's life and make him develop normally from that point, I probably would, so long as I could forget the lovely child he has become with his autism. It would be a tough choice though. I may not be going through my divorce, either.

If he wasn't such a happy child, if he suffered a lot more than he does, I would have wanted him cured, of course I would.

Is it worth all the hardship and upset that so many DC and adults suffer just to get an occassional Bill Gates? Glad I don't have to make that decision because I wouldn't be selfless about it.

EllenJane - another autism divorce statistic here, though it's my step-son with the autism in this case. I would give anything for there to be a cure and forfeit the potential Einsteins and Bill Gates as a result. For me, the occasional brilliance of an autistic individual does not outweight the general suffering for the majority of autistic children and their families. Of course, it all depends, to a greater or lesser extent, where on the spectrum a child or adult is.

But frankly, I'd be far, far happier if my step-son was able to have friends, go out to the cinema or to a restaurant as a family, go through the day without having meltdowns, screaming, hitting or soiling himself, instead of being obsessed with theoretical mathematics and quantum physics which, frankly, do no-one any good whatsoever owing to the severity of his day-to-day behaviour. I wish he had a far lower IQ and far higher NT traits.

Anyhow, guess once divorce is done and dusted, then this will no longer be the never-ending issue. Doesn't stop it being heart-breaking for all concerned though.

It does depend on where the child is on the spectrum, and perhaps I have been lucky, but I really really honestly wouldn't want DS any other way.
How would DS feel if he read somewhere that his mum wants him not to be who he is? As many have said here, often the problem is more with school, people who don't understand, resources which are not there.
And as for the cure, if there was a cure for being an immature and cowardly individual who runs away from problems, perhaps ex-H might yet benefit from it (just adding to those divorce statistics...)

Dawns dd2 here.
I'm autistic. I don't want to be cured. I'm me and while I am not a set of autism traits I am who I am, with autism. Someone said that their child was brilliant at numbers but wouldn't be able to do anything because of his social skills. He will, just the right person needs to be there to ensure he will.
Don't you think we know it's hard on our parents. We do. We may not understand why it's hard. The things Mum wants for me, don't bother me, I'm not interested in friends who talk about clothes and make up and boys ad infinitum, but Mum would like me to have friends.
Yes my social skills, or lack of have got me and the family into trouble, but Mum can sort it, that's part of what she's for. When NT kids get into trouble, their parents sort it.
Anyway. I'm good and clever and reasonably articulate and I may not be those things without my autism.
You need to watch all of the X men films, explains better than I.

Ach DawnsDD, we don't need no X-Men when we've got you . I don't respond to all your posts but I learn something everytime you do post.

Thank you DawnsDD!

Conversely, I have AS, and I wish there was a cure.
People are always impressed by how clever I am.
Well I don't want to impress people; I want friends.

I'm sorry to hear that Tann.