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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To wish that there was a cure for ASD

93 replies

pigletmania · 07/05/2012 21:26

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 Sad. 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 Sad, 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.

OP posts:
LucyLastik · 07/05/2012 21:27

YANBU Sad

LentillyFart · 07/05/2012 21:36

Sorry for your troubles. I'm a great believer in the power of diet to fix a lot of stuff - don't know about this but it's got to be worth a try hasn't it? Good luck!

Firawla · 07/05/2012 21:38

yanbu. got to be worth a try with the diet - hopefully you find something that helps your dd

it is hard. one of my ds has some kind of developmental delays (awaiting dx we dont really know what it is at the moment). he is such an amazing lovely boy, but sometimes it really hurts to see what he cant do compared to others of his age, like he is missing out on so much.

i dont know what to advise :( i hope things get better for your dd and you

willbeskinny · 07/05/2012 21:41

YAdefNBU.

DS has ASD/ADHD. This weekend he has nipped me, kicked me, hit me, told me he hates me. He's 6. I wanted his SN to fuck the fuck off yesterday.

Today we've spent the day at home and he 's been brilliant. Today, I wouldn't have him any other way.

Overall, it prob would be easier if there were no SN's, but once you have a diagnosis and your DD has the correct kind of support hopefully things will be a little better for you all.

Original poster
pigletmania · 07/05/2012 21:42

i just wuish that there is some magic cure

OP posts:
Dawndonna · 07/05/2012 21:44

I'm so sorry it's not easy. However, I have three with ASD. They are funny, clever, kind and loving. They have awful difficulties understanding the world around them, but with the right coping strategies we get by and have fun. They do not need a cure and we do not want one.
I do understand however, how wide the spectrum is, and were mine different, I may well wish for something different.

UnChartered · 07/05/2012 21:44

YANBU

but once you have the dx, whatever the letters may be, it's a key to unlock your way into her world, and one you can use as a crowbar to get extra resources, help and understanding.

{{{hugs}}} it's bloody hard though. DD has just had a dx for ASD, she's highly verbal, which leads people to expect more of her than she's capable of.

and for my twopennorth? the school isn't right for your DD, she needs understanding and nurturing, in the right environment she will shine.

willbeskinny · 07/05/2012 21:45

Oh and diet is def worth a try. I cut out certain additives, preservatives and sweeteners to try and help with DS ADHD and we noticed a massive diff within only a few wks.

EllenJaneisnotmyname · 07/05/2012 21:45

Hi piglet. It's not fair. Sad

Have a look at the Sunderland ESPA which used to be part of Sunderland University. They will test a sample of DD's urine and let you know if they think GF and / or CF will be helpful. Get the sample tested before you start the diet. Get the advice of an NHS dietician, especially before going CF to make sure you aren't missing any essential nutrients. Try omega fish oils, like vegepa or eye Q as well. And good luck. X

IndigoBell · 07/05/2012 21:49

Well, I've virtually cured my DSs aspergers (although his problems weren't as severe as your DDs)

To do this we have done:

  • gluten free / dairy free diet
  • probiotics
  • auditory integration therapy
  • retained reflex therapy
  • cranial osteopath
  • Tinsley house

This lot has taken us 3 years. We havent finished Tinsley house yet, but I think theres a very good chance when we finish it in 6 months or so he will be cured.

If not, he's certainly about 95% better than he was 3 years ago.

He will be going up to secondary school in Sep and I have no concerns about how he will cope at all. (3 years ago I didn't think I'd be able to send him to secondary school at all. My plan was to home ed him)

Keep trying everything. You don't know what can be achieved unless you try.....

McHappyPants2012 · 07/05/2012 21:50

Yanbu.

What are the school doing. My son has austism and his teacher has made a chill out zone in the classroom for him to use when ever he wants and got a chart with pictures, so he goes in the morning and he knows what will be done that day. Also he has alot of 1-1 with the TA and the school has applied for more funding for him

Shagmundfreud · 07/05/2012 21:50

YANBU.

But in other ways I treasure my son who has ASD for the unique person he is and see that his ASPIE traits could make him a valuable addition to society - though perhaps not this one. If he was a Maasai warrior living on the plains his incredible alertness and energy and ability to notice details would make him a winner as would his tolerance of solitude. He's just profoundly ill suited to being in a classroom with 30 other children who find him odd and annoying... Sad

ThatVikRinA22 · 07/05/2012 21:55

my DS is 20 with ASD, and it was very hard for him growing up, very hard for me because school was such a minefield.

but now he is 20, most of the time, i like him. There are things about him i would change, but i think he thinks there are things about me he would change if he could aswell.

we have out ups and downs, but on the whole, apart from a few significant blips, there isnt much about him i would change if im totally honest, he is kind, funny, loving and intelligent.

I wish he could understand my feelings better sometimes. I wish he could understand the consequences of his actions better, but when i look at some 20 year olds, i think we are ok.

remember, ASD are developmental - our children do develop, its just at a different pace to others, and they are different, and its how well we adjust to embracing that difference and learn from them. i think the hardest years at their school years. it certainly was in our case.

i love my son. he can be a right pita. but i love him and he is remarkable and he has overcome some terrible difficulties to become the young man he is today, he starts university in September, doing a computer science degree.

he is shit with money, but we will cross that bridge when we come to it....(she says gibbering)

Original poster
pigletmania · 07/05/2012 22:12

thanks everyone, was just so down after yet another meeting. Mabey no the school is not the right environment for dd. she has a tA for most of the day, and they do individual work and she has made so much progress at school, but the bitng and throwing they cannot cope with. it is a small open plan school with n classrooms, only curtains separating the different areas, so dd may be with 59 other foundation kids, which can be overwhelming for her and she lashes out. Thanks ellen Smile. DD preferres her own company and will be completely oblivious to those around her. in the park she preferres to run round in circles hand flapping whilst others of her age are playng together. Of course i love dd with all my heart, but it really hurts when ds smiles at her and squeals with delight and she just sits with her back facing him nt intractng. the only time she comes near him mainly is to hurt him, as she hates his crying.

OP posts:
Original poster
pigletmania · 07/05/2012 22:16

there are some fantastic i pad apps that dh dowloaded that hlep with emotions and feelings, and some good social story apps to help her understanding. she can sit for half an hour doing the problem solving, writing apps whereas its 5 mins if i try and teach her. she is capable of so much for but is limited by her sn it really sad. i constantly have to tell people she has AS (even though she is not formally dx) to explain her blanking or ignoring them when people try to interact with her

OP posts:
BulletProofMum · 07/05/2012 22:20

If its any constellation, there is a lot of money and research ongoing at the moment. I work for a large pharmaceutical company, we are collaborating with a number of other companies and academia to look into new approaches to ASD.

googlenut · 07/05/2012 22:25

What sort of things bullet

BulletProofMum · 07/05/2012 22:28

Predictive typo error above!

Pharmacological approaches

Original poster
pigletmania · 07/05/2012 22:28

thats interesting bullet what kind of things?

OP posts:
BulletProofMum · 07/05/2012 22:29

Predictive typo error above!

Pharmacological approaches?

Google EU AIMS IMI

BulletProofMum · 07/05/2012 22:31

It's only just starting so progress is a long way off.

googlenut · 08/05/2012 14:26

Who are the academics involved?

googlenut · 08/05/2012 14:31

Looking at google it said 5 sites in the UK were involved. Can you say where they ate?

WilsonFrickett · 08/05/2012 14:47

We went to a meeting on Friday, in which we were told that the school did not have the recources to cope with her

But she has a statement, right? So they have to find the resources to 'cope' with her - and that is their responsiblity, not yours. I am sick to the back teeth of schools playing the 'we don't have the resources' card - her statement is a legally binding document which means they have to find them.

amicissimma · 08/05/2012 14:59

This reply has been deleted

Message withdrawn at poster's request.