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.

I think it's more likely to be down to the fact that autism is genetic so the mother may well be autistic too or BAP and food issues occur in 95% of autistic people. Correlation between weight and autism does NOT equal causation.

amicissimma, the article is misleading. Read it again and notice the use of hedging phrases such as 'may cause' 'could be linked to'. They are implying that obesity CAUSES autism. But that is NOT what the research shows. The research is a prevalence study, the purpose of which is to see how often a condition occurs in a particular group.

Or to quote Paula Krakowiak, lead researcher on the study, '... the study does not conclude that diabetes and obesity cause ASD ...' International Business Times (2012)

Piglet I think it is esp hard when you are in no mans land, DS1 is in MS and has good coping techniques his ASD is hard now to detect. dS2 is non verbal and is SS without a care in the world. It sounds like you DD is straddling both worlds. Use this time to find what is right for her, can the diet help I do not know but it will not do any harm.

My son has ASD,we use gluten free but this only helps with his facial tics and bouncing about,admittedly his problems are not as severe as your daughters,but we have had times when other children were scared of him,that is hard to hear.I think he is the way he is meant to be and we love him for who he is not the initials after his name,I honestly don't think he needs a cure,because there is no "cure".ASD is very cruel and hard to understand so I understand your frustration.

ASD is very cruel and hard to understand

It's is also brilliant:

'A partial list notes that autistics have, on average, superior pitch perception and other musical abilities, they are better at noticing details in patterns, they have better visual acuity, they are less likely to be fooled by optical illusions, they are more likely to fit some canons of economic rationality, they solve many puzzles at a much faster rate, and they are less likely to have false memories of particular kinds. Autistics also have, to varying degrees, strong or even extreme abilities to memorize, perform operations with codes and ciphers, perform calculations in their head, or excel in many other specialized cognitive tasks. The savants, while they are outliers, also reflect cognitive strengths found in autistics more generally. A recent investigation found, with conservative methods, that about one-third of autistics may have exceptional skills or savantlike abilities ...' Professor Tyler Corwen

There is no cure, you have autism or you don't.
There is managing behaviours, there is learning to fit in with societal norms, there is a million and one changes which may or may not occur as kids grow up which may or may not make life easier..
but I see having an ASD like being a stick of seaside rock......no matter what design is on the outside, no matter how far down you snap it in half, the words are still there .....at the core.

Really wouldn't want my son any other way,he notices things others would never notice,asks brilliant and clever questions,enjoys Laurel and Hardy films,has a wicked laugh and is brilliant company.

I think that there are many different types of asd.

I love my son. He is wonderful. I have no wish to change who he is.

But I would change his fear and his confusion, distress and anxiety. In a heartbeat

Totally agree Pagwatch - that has been the worst aspect in our experience.

My DS is 5 with ASD too, it's hard trying to deal with the self harming, he used to bite himself too and when he's really frustrated he slaps his face. He's started ripping the skin from his fingertips too and after finding him in bed with his sheets covered in blood from picking his fingers he now has plasters on almost every finger.

He's been sent home from school 4 times now for hitting too but we found the gluten free diet to work well to stop him getting so hyper that he looses control or becomes incredibly defiant and he's stopped hitting so much, but unfortunately other traits are still there and have been unaffected.

i know wilson, that is what they said. well if they feel so negatively than we wuld rather dd in a positive environment that will help her. I think that the headteacher is getting rid of sn in her school ut the back door by using the guise we are doing whats best for the child. I think that they ae doing the same thing to another boy in dd year with AS

Piglet, when DD is out of Reception will the layout still be the same or will she just be in a class with 30 children rather than 60. The difference sensory-wise to her might be huge as it may be much less overwhelming.

I wouldnt change my DS for the world, I love him and he is the sweetest little boy.

But I agree with Pag - I would change the upset that his ASD causes for him. The sensory problems and the isolation for starters.

DS is 13 and has ASD, he is in specialist provision. It broke my heart when it became clear that ms wasn't right for him, but I am pleased that he has access now to specialists and that all the professionals recognised that his needs were too severe for mainstream.

I understand what you are saying that it would be lovely to have all the autism disappear, with its anxieties and social awkwardness and the bullying. But, since the autism is there regardless, I actually think it is better to be severe enough to warrent special school and all the attention from specialists, than to fall into the middle ground where you aren't quite severe enough for special school, but can never quite fit into ms.

I've seen lots of apparently mild cases suffer because they are bullied in ms or they just aren't taught the life/social skills to cope in the real world. I've known adults who seemed to have coped with the academic side, even progressing to university, but completely lacking the social skills and independence skills to manage in the real world. I think they've never had the chance to address their difficulties and have been let down by the education system.

Uanbu, my Dd3 has a dx of Asd,

I wish I could take away the anxiety, she worries so much

She is clever and funny and wonderful but her days can be so difficult when she is stressed and can't tell anyone.

I wouldnt want to change my DS, but id like to change the system that makes it so bloody hard to get provision for him educationally [well done on having a statement pre diagnosis! he still hasnt!]

Beware 'cures' there is no cure for autism but there are a lot of people out there making lots of money off parents who want to find a cure.

I think the best thing you can do is accept autism and work on managing behaviors.

YANBU

I know piglet, ultimately you just want them to be happy, and if you've got to fight school every step of the way then that has a big effect on both the DC and parents tbh. I do hope you find the environment you're looking for.

My friends have DC in a different region to us and they are doing a massive school building programme, but all the new schools are like you describe - a 'whole year hub' of maybe 40+ children, with group work spinning off from the hub. I thank my lucky stars we don't live there, it would be hellish for DS.

Thanks very much for all your replies. No dont get me wrong, I love dd very much, she is my life. my heart breaks because there is so much within her that her disaablity is preventing her. Its like a broken cd, where you can glimmers of the music in between the repeating. I want take away the social awkwadness, behavioural issues, and speech and language problems. the school have been excellent in getting her statement, but i guess they are limited to what they provide and the environment is not right./ We are looking at MS with autistic department and she is not too bad but because the set up at her current ms is not right, her behaviour gets worse. There are 60 in foundation, with no dividing walls, open plan, no classrooms with doors like a traditional set up, so all the noise cmmontion of 60 childen and nowhere to go can make dd behaviour worse. when ds crying gets too much she goes out her room shuts the door and chills out in her room

her dx is social cmmunication difficulties, speech and lang developmental delay, the paed is reluctant to give her a formal dx and adopts a wait and see approach but we have a meeting in a few months time and will press him for an AS dx

please please please don't think that gf/cf can cure autism. It can't. It really really can't.

My two both have autism. They were tested (sunderland) and were found to be gluten intolerant. We took them off gluten - their intolerance is so severe that they actually get gluten free food on prescription.

We noticed improvements in behaviour - significant ones! and also with bowel control - but it did in no way cure their autism.

I just really don't want you to think that you can do anything to cure autism, because it's just going to hurt you when you realise that's not going to happen.

I also wish that there was a cure for autism. This is very selfish of me. It's all about how I feel. I see how isolated they are and it hurts me. I fear they won't find someone to love them, I worry about whether they'll be able to have any independence. I am scared that people will take advantage of them.

If they didn't have autism, maybe they'd get married, have kids, have a career, a house... but maybe none of that will happen for them, and that breaks my heart.

But then autism isn't like a, I don't know, a big mole on your face. Where you have it removed and you are still you. Autism is who you are. take it away and you aren't you. So, thinking about it, it isn't the autism that causes the problems, it's the lack of acceptance and understanding. I'd rather change the rest of the world so that they accept someone with autism.

my youngest is so severely affected that he hasn't got a clue that he's autistic. He doesn't know he's autistic and he doesn't care. He lives in a totally different world and he's happy in it. He'll never live an independent life, he'll always need care and will probably live in a group home as an adult, but he'll be happy. He's even got a friend. A best friend. A boy who loves him just the way he is and values his friendship. I love that boy SO much for that, I can't tell you!

My eldest, otoh, knows he has autism and gets upset when people don't want to play with him, or partner him in pe. I wish I could take his autism away, because it hurts him. But he also loves his rituals. I don't think he'd want to give them up. He doesn't have a friend. Not a real friend. I could cry, because he would be such a good, loving and loyal friend, if only someone could see that.

Great post Hecate

Yes good post Hecate.

Hectate, I have an eldest son just like yours . I'm hoping he'll find life easier as he gets older.
Having an ASD brother has given ds2 real awareness too. He had a friend who is socially awkward and considered weird at school. Ds2 will always make sure he 'bumps' into him at the park when he has friends round so they can see that his weird friend is actually a great friend and well worth getting to know
Here's hoping more asd kids find someone to show solidarity with them too.

Ds1 has ASD. He is now 22. He also has some learning difficulties and can be a right PIA when he wants to be - like this evening. He may never hold down a full time job, have his own home or get married. He really wants to have children of his own.

He does have some qualifications and did manage to get a temporary job recently. He also has some friends.

A few weeks ago he said to me that if there were a cure for ASD he wouldn't want it.... as "I wouldn't be me any more, Mummy, and I wouldn't have my interest in X any more." says it all really.