Let's Talk Autism - Thank you

[Oracle]

Many thanks to posters here for contacting the BBC and submitting the Autism-in-Mind question to be asked during tonights debate - it's not looking as though it will be asked sadly - which is a shame given that the BBC had probably had hundreds of resonses from parents and carers who take part in forums all over the net.

I thought that some of you might like to see what led us to asking the question about where the £28.2 billion pound was being spent given that so many children and adults to not meet the criteria for provision and services.

www.youtube.com/watch?v=eEKMsO9t0pU

Thanks Oracle

Our sit, is that I ahve 2 with ASD (one AS and one Autsism, though I find the AS child more difficult in many ways, reflected by a HR DlA award for him compared to MR for his ever-dependent sibling). SSD assessed ds1 as not meeting teh disability criteria depsite very severe aggression, eating disorders, etc. They looked at ds3 who was beinga ssessed at the time and said 'Oh I ahve an MA in ASD: he's not autistic' (in fact I am 1/2 way through teh taught element of said MA, at no point does it qualify one to diagnose a child who has had their back on you for an hour !!!).

Almost 3 years after the SSD dept have agreed to reassess in a few weeks, which is a good thing as tbh I am struggling now with both of tehm plus their 2 siblings (one of whom has mild dyspraxia and poss. ADD but I can't even go there!). DS3's SNU has a summer club ds3 can access if SSD OK it where eh will get 1-1 help and all teh asd kids they so far go there so I am hopeful but last time the report came back with 'Mum is intelligent and educated and will cope' in every box, and 'DS1 just does this to get attention from his Dad' (the only link there was ds1 kicked off at night and Dh worked nights).

It's a ridiculous situation. School have told us that we are seeing ds3's ASD as les ssevere than it is and that we won't be able to care for him into adulthood but without SSD input what can we do? We're also facing possibly cancelling a break away at Whitsun as Dh has to be away for half a day (an exam) and I can't risk being tehre with ds1, the toddler and no backup. Not working has driven me to deprtession and I haven't had a night out with a friend (hve had a few with DH) in 4 years and tbh am wondering what sort of life this is, much as I love my kids. I keep telling DH I think he should leave as much as I love him, I geneuinely thibk without us round his neck as a millstone he could have such a better life.

Hang on a moment the kids are just as much your DHs as they are yours. I know how you feel I often think that my DH is being held back by living with us but then I think why should I be the only one picking up the tab? My eldest autistic son is not my hubby's son and that does complicate things for me. My eldest has the dx of AS while the youngest has a dx of autism. It is very interesting to hear you say that your AS son is more difficult in many ways. I feel the same. My AS son also has higher rate DLA care unlike the youngest who I find much easier to handle in almost every way.

It took 10 years to get a dx of my AS son. He was 13 when we finally got his dx. The ten years it took to get his dx almost tipped me over the edge. I actually attended school with him every day for a year because I would not walk away and leave him being physical ill every day. It too two nervous breakdowns and him being hit by a car before we finally got his dx. My youngest was diagnosed first, six weeks before his brother. I had so called specialists telling me that my eldest must have presented in a very subtle way - well actually no he presented in a smack you hard in the face type of way which they all chose to ignore

We have never qualified for any help from the SS even though my eldest is also severely visually impaired. I miss working to I had a really good job before I had to pack it all in 12 years ago now. I spend my time campaigning now and daft as it may sound it helps to keep me sane.

I am fortunate that our other two kids (I have an elder non autistic son and hubby and an older daughter also NT) are much older and can get on with their lives, although my eldest is our respite care and that worries me to.

I wish I could think of something that you could do to make the DSS get their fingers out to help you. I hope you find someone to help you through your break it would be a great shame to miss out on the break because of one half day exam

We'll solve it Oracale, we always do.

I also had a good job; manager for homestart and then I did my degree. Should be teacher trained by now but not gonna happen. Tthe MA should lead to other avenues though- and keeps me somewhere vaguely enar sane, with brief detours elsewhere at times.

I think ds3's SNu are backing us for SSD this time; I worry we will end up with a horror story otherwise as just doing summer basics such as a shop is a danger with ds3, he runs into people and near cars but can undo a harness easily as anything. HFA with low functionality- great mix!

Good luck with the campaigning; am trying to get an ASD sibling group started (ds2 really struggles with 2 asd siblings, luckily ds4 still too young and has a big age gap) and one day should the money appear I want to use my homestart skills to start a charity which provides a mentor to ASD famillies for the time imemdiately around and after dx (up to 1 or 2 years) to help them adjust, with DLA, schooling etc.

DS1 was 6 at his dx but only ever got one becuase of his aggression; where we used to live we were told tehre's no cure for AS so where's the point in a dx?. It was only when we moved and his school work went under that people started to help- oh and when we got load of BIBIC paperwork, that helped too.

I want to use my homestart skills to start a charity which provides a mentor to ASD famillies for the time imemdiately around and after dx (up to 1 or 2 years) to help them adjust, with DLA, schooling etc.

Now that is something to aim for.

Two of the parents in our support group are now trained and qualified counsellors up to degree level. We are trying to get some funding so we can at least offer parents something at the point of diagnosis. We now offer telephone support and I do not regret doing so but we are just about snowed under. There is a great need for support, mentoring, counselling at the point of dx. We are also talking about doing a DVD so that we can give the parents something other than a 'you child is autistic - thank you and good bye'

I really like your idea No one really understands unless they are living with it 24/7 do they?

They don't Oracle, no.

I did counselling but many eyars ago; my degree is in world faiths but I think that's a big plaus as cultural issues are massive when coordinating support.

Hi seeing as Gordon Brown is on here tonight I thought you might want to add your question here if you haven't already spotted it