The Autism File

[Debs75]

Have just read last months copy of the autism file and i am pretty demoralised. I don't know about other parents but i am left with the overwhelming feeling that i am not getting the oppurtunity to do things that would benefit my ds (10 asd).

ATM his consultant paed has discharged him, we are trying to get back on his list as we have read about so many things that they should be doing.

TAF says they should have their hearing and vision checked regularly, he had his checked when he was 3.
There are articles about medicating them to change hormone levels, gluten intolerance, mercury poisioning and lots more stuff which I don't know a lot about.

When we wanted to try a gf diet we saw a dietician who looked at what Billy ate and said on a gf diet he won't eat half of what he is used to so we might as well not bother.

I feel that the authorities have just sent us out with an asd child and left us to it. He has a special needs nurse who regularly sayd 'I don't know much about autism'
his school help lots but I feel that they think he will be like this for ever and don't see how they can 'cure' his autism.

It may be different in other counties or countries I don't know, I would love to know if you feel as helpless as I do

I know what you mean.
Medical people seem to offer diagnosis, but nothing more.

I read autism file and felt encouraged that at least there are some things that help some people.
We are in process of finding nutritionist experienced in autism/aspergers adn into the gluten/casein stuff and are going to try what they say, on basis that at least we will have tried.

i know there are some people on here who do these biomedical things and have found them helpful they might have more info for you.

I haven't heard of the autism file, but given that I'm compiling my own private version of the british library on the topic, I am similarly overwhelmed.

Same thing: given dx and a few leaflets and waved goodbye. Thank goodness for this area of Mumsnet.

I have been lent a file on Son-Rise which has various checklists in it. I am waiting for a strong moment to start to go through those to see where both sons are.

Do you feel like starting a starters guide to what to do after a dx? Hitchhikers Guide to Autism. Sorry I know it's not funny, but what is there to do?

I don't even have a list of what areas I am not dealing with....yet. I am 7 months post dx.

I did stuff all my papers into a nice new file a week ago! I sat down with it and did most of a front sheet with headings, all at random, just anything I could think of as a starting point. Now my file is behind me on the window ledge waiting for my next go at this unwieldy project.

Is that the magazine you can buy from WHSmith? I have only bought it once, but it was very helpful.

I agree that once you get the DX, there is little help after that, and most of it you either findout yourself or get told by someone who is already accessing that type of help. We were having this self same discussion at the coffee morning/support group at DS2' SN school the other week.

I do wish I could do more for DS2, like some sensory work and perhaps some more speech therapy, but I find it so stressful at times.

Thank god for MN!

I asked a doctor at my surgery to refer DS (currently going through process for dx for autism)for occupational therapy as the private consultant said it would be very helpful for his sensory issues and behaviour. Dr thought OT was for old people to help them after falls etc and never heard of it for children! Like banging your head against a wall.

Yes I have bought the last few editions ( from borders I think)and I feel a complete beginner/ameteur especially when looking at the adverts for all the biomed stuff! Still we have to start somewhere! The NHS really has little to offer in the way of therapy and support and it is all very costly otherwise. It does seem to be changing. We could not get nhs salt for ds when he was preverbal ( he had to be talking at a 3 sentance level which he did not before starting school) but now preverbal children are no longer ignored. Ds is 9 and I have just got on a new signing ( makaton course) which simply was not available to us 5-6 years ago.

Actually I asked for OT support years back and it is only now ds is getting help for his sensory issues. So little by litte enlightenment!!

I was totally gobsmacked when the paed who diagnosed ds with asd said we would be discharged shortly after dx as ds didn't have any health issues. I feel we are so behind America in this regard. It is totally left to parents to sort all this out. The Uk system is still very much of the opinion that once autistic there is little else can be done.
Hopefully things will change as more children are dx and the government realise they have to do something. But unfortunately we are in the interim and have to try and sort ourselves out.
For my own part, I'm using a mixture of therapies that I've read about, mainly relational type stuff as ds is verbal. But I have only read about the whole diet/heavy metals/toxic stuff and don't know where to start with all that. And am scared I might go down too many blind roads to make it worthwhile.

milou2 I have often thought of writing a 'what they don't tell you guide' including tips on securing doors, sourcing aids and aboveall being realistic on what to expect. Never reall;y had the time or know how.

I have had loads of trouble with OT's in my experience they aren't enough so they are stretched really thin and are keen to discharge you.

In the 50's a very old family friend had her autistic son took off her and put in a home. I think that the government haven't realised that we as parents only have 2 options put child in a home or care for them ourselves. as a consequence it is us who take the burden with no real help. america are so far in front because of the private health care so you have medical companies striving to develop the best strategies so they can ultimately get your 'business'. WE have the nhs who strive to beat targets.

In America the biomed stuff is all offered by private doctors, so not unlike here really. Most (all?) insurance companies in the States do not cover autism so the parents pay themselves. It really isn't that different from here, other than there are more people offering services and more of a culture of paying for medicine.

Hi

Linking to another thread, Caudwell charity will help fund biomed. They work with practitioners and supplement providers too. We had 2000 last year and 3000 for this year. It pays for tests and treatments for ds.
Take a look at Treating Autism site, they have a beginners section. There are also support groups that run up and down the country.
We've been doing diet and supps etc for 2 years and things are going ok for us

j
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thank you jg3k. i had asked for msome info from the autism clinic (i thtnk) and on the form there was a box to tick if income under £45k because then you could apply for funding to caudwell trust.

thank you jg3k. i had asked for msome info from the autism clinic (i thtnk) and on the form there was a box to tick if income under £45k because then you could apply for funding to caudwell trust.

i bought this magazine too... and have felt since that there is so much to try...but it is knowing where to start.

it's no good trying everything at once....i would imagine doing 1 at a time...but which one????

MissF - I suppose if in doubt whatever's likely to be cheap and reasonably easy to implement!

saintlydame - there's an interesting ish chapter on Debbie Feit's Parents Guide to Speech/Lang problems on the problems of getting US medical insurance to cover SALT - they tend to exclude IIRC "developmental" language problems, I can't remember what she advised to try and get it categorised as.

Things haven't changed in the 4 years since DS1 had his dx then. It's so depressing to find out they haven't learned anything from others' experience.

We found the Help course run by the NAS very good. In our experience, it is practically impossible to get OT help, or a dietician on the NHS and unfortunately, it costs so much otherwise. Food-wise, we've learned by trial and error, but I would have loved to have had some dietician's support when we started weaning DS from a very limited diet to a more healthy one. I personally would have found counselling helpful (and probably still would to be honest) to explore and get over my own feelings of guilt and failure, so as to do a better job as a parent. Sometimes I think that family therapy/counselling/ whatever should be available too, as I have 2 NT children and 2 ASD, and it is hard to know if and how much the NT DCs may be missing out. Sometimes you just need an outsider to reassure you that it's all right and you are doing OK - I feel we are working in a vacuum the whole time, and it's impossible to know what is ASD and what is normal teenage strop.

I suppose we tend to manage the current issue and try to prevent the next one, or just the next meltdown. At the moment, we can't even persuade the ED Psych that he hasn't seen DS1 for 3 years and it might be a good idea to check on his development.

Sorry OP I know that's not terribly helpful for your original point.

I could help write the what-they-don't-tell-you-at-dx leaflet though

Hi
Did you know that Cauldwell Children fund home intervention programmes too?
www.cauldwellchildren.com

Just for your info- Lisa Bates is the contact person there and she is brill- a number of families I work with privately access their services
Ruth
www.autismsupportservice.co.uk