Aspergers/ASD support thread

tiamai_d

You will need your own Maternity notes as well as your son's medical notes.

A lot of the delivery information is on the Maternity notes, with only a review on the child's notes.

Another way is to contact your PTA, or phone any of your local hospitals, and ask for the complaints procedure. you will be given an address to write to with a complaint. If you write and explain what is happening with your son, and you have concerns that it was as a result of his birth, and say you were not fully de-briefed as to what happened at his birth, they will investigate for you. You should get a run down of what happened, in plain English.

It cost me £48.00 for copies of my maternity records and DS2's records last year.

I would warn you that reading through it is very stressful. Often there have been things that you were not even aware of.

OR, you can request to simply view them, with someone who can explain what everything means, and copy only what you need.

BernadetteN

finc wrote: »

I didn't know that. My 9 year old daughter is also in the process of being assessed for Aspergers and she had a really awful birth, mainly due to poor medical care. I'd hate to think that it could have been avoided.

Sorry to hijack the thread, but can anyone who has already been through the assessment process give me an idea how long it usually takes. We started over a year ago and there still hasn't been any diagnosis either way.

It's taken us 7 years so far, started at 4 years old, thrown off Speech Therapy and OT lists at age 7 when, without consultation, because he was considered within normal boundaries (yet they had not even seen him for a year so how would they know), restarted again at 9 when I was not satisfied and son was showing further signs of not being within normal boundaries, 18 months on he is 11 years old, at grammar school, still waiting a final assessment test (ASOD or something) and then appointmnet with the paediatrician in around May 2008 when he should finally get a positive diagnosis and that will be 7 1/2 years after initial referral. No-one has ever asked me how his birth was.

Snaggles

Gosh, thanks so much for all the replies - what an amazing website this really is!

I'll make my way through and answer any questions/reply to any points raised, but please give me a nudge if I miss anything...

Suki - that's great, so it sounds as though I should be able to get them.

Penny Watcher - I'm glad he's okay, that must have been a bit of a worry. Funny, I'd never heard the word 'neurotypical' until a few months ago - now I hear it all the time!

rio - yes, I got the impression they suspect a link between birth issues and ASD - it's quite an interesting topic really, if perhaps a bit too close to home at the moment. But definitely something I'd like to find out more about.

floss - thanks very much for the links, I'll have a look at those. It's always handy to know which sites people have found useful because the amount of information on the internet can be a bit daunting sometimes.

finc - it's taken about 18 months so far for my son, and touch wood we are expecting to hear something just before Xmas. I hope all goes well with your daughter's assessment.

Jo-R - thanks, I will ask about PALS at the hospital where he gave birth. Blimey that really was a fast second stage! I had a fast labour with my daughter (84 minutes from first contraction to first cuddle :eek:), but a fairly normal length labour with my son (9.5 hours). It would be really helpful if a midwife goes through it with me, because I'm sure I wont understand it all!

Strapped - thanks for the letter template xx

blue-monkey - it does make you wonder what impact the birth has on their long term health. I didn't know about the chiropractor sessions - Ryan does have a slightly mis-shapen head (marginal though) because he had flat head syndrome (not sure if that's what it's really called), although we've always been told it's nothing to worry about. Perhaps I should mention that if we have to have any more assessments. All the best to you and your son for his assessments.

Poppyscorner - I'm really sorry about your first child, that must have been really heartbreaking. No matter what Ryan's problems are, I never lose sight of the fact that he is here, he is healthy, and for the most part he is happy. I'm so glad you decided to bring your DS2's induction forward and I hope you manage to get the support you need for her.

tiamai - yes, that's a good point, I will also request my maternity notes. I'm not actually wanting to make a complaint as I don't think there was any medical negligence involved, but I will prepare myself for them making uncomfortable reading, thanks.

Bernadette - I've heard mention of something like Autism Spectrum Not Otherwise Specified (which I think means not something with a specific name like Aspergers) - could that be it? (Again, not 100% sure that was exactly what it was called). Sorry you have had a hard time getting a diagnosis, and hope your concerns are taken more seriously this time. DS has seen a speech therapist and was on the 16th percentile for 'inferential comprehension' which is at the very very bottom end of normal, and yet he is an exceptionally bright little boy, and is obviously already finding ways of disguising his difficulties.

(Edit - sorry, got confused - it's pervasive developmental disorder not otherwise specified - thanks D&DD )

Thank you all again for taking the time to reply xxx

alm721

Sorry to hijack this thread but my brother has suspected aspergers along with other special needs and had a difficult delivery, cord round neck, was blue, poor apgar score, also feel it was a mismanaged birth however thats beside the point. The thing is hes now 21 and has never been formally diagnosed with Aspergers. Hes currently at a special college (camphill) where they are convinced that he has Aspergers (they do deal with it a lot) and feel that we should get him formally assessed as this may help us get appropriate help for him from social services. So can anyone please tell me how to go about getting an assessment. We've been told that we need to see a clinical pyschologist but dont know how to go about it. Its complicated furthur by the fact that as he is residental at the college during the week they made us change his doctor to the one local to them (the college is about 80 miles from us) therefore its hard to speak to them as my mum is obviously not registered with them and they have only seen my brother a couple of times over the last year so they don't really know him. Is there anyway to speed up the process. Can you go private? (not very MSE I know but my mum's really worried about this). Any help/advice would be great
Thanks

seven-day-weekend

My son also probably has Asperger's. He's 27.

He did not have a difficult birth BUT because of a problem I had (which I won't go into on a public forum!) his head was engaged for more than a month before he was actually born. That is why the birth was so quick and easy! I've never considered it before, but having read on this thread about the number of Aspies with 'unusual' births, it does make me wonder.....

Snaggles

Hijack away alm.

I think even as an adult, it's worth considering trying to get a formal diagnosis for him. I'm not sure what would be the best way in your/his circumstances.

The way we went about it was we just went to the gp and took along a long list of the behaviours we were concerned about - the GP had a quick read through and immediately referred us to.....um......someone (I can't remember but I can check if it would help?). They saw us but didn't really do anything - just sent us away with some forms and asked us to go back in 6 months. When we went back, we had a session with a paediatric psychologist who referred us to CAMHS.

CAMHS offered us an appointment at their screening clinic, and at that appointment, it was suggested that Ryan should go for a full autism assessment, which he has now had. So we're just waiting now until they decide what their diagnosis is (they will go and do an observation at school, and then have a meeting to discuss him).

The meeting is mid-December, so we are hoping to hear something around Xmas time. I'm terrified really, but I don't know if I'm scared that he WILL get a diagnosis of Aspergers, or scared that he WONT - either one has scary implications!

Snaggles

Hi Seven-day-weekend! Yes, it really does make me wonder. I can't help thinking there must be more to it than just 'a wiring problem', which is what I keep getting told.

There are a lot of positive things about having Aspergers though from what I've seen - Ryan is an amazing little boy and I admire him so much for coping so well. He can be so unintentionally funny with the things that he says, and although he doesn't really empathise with emotions in others, in many ways he's affectionate, loving and kind.

seven-day-weekend

alm, I believe that diagnosis is not very easy for adults.

Try the National Autisitc Society for advice they will give you loads of help and support re diagnosis.
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=212

D&DD

Snaggles wrote: »

Hi Seven-day-weekend! Yes, it really does make me wonder. I can't help thinking there must be more to it than just 'a wiring problem', which is what I keep getting told.

There are a lot of positive things about having Aspergers though from what I've seen - Ryan is an amazing little boy and I admire him so much for coping so well. He can be so unintentionally funny with the things that he says, and although he doesn't really empathise with emotions in others, in many ways he's affectionate, loving and kind.

Hi Snaggles We were told the same..his brain's just wired differently and this may mean he has a problem with taking statements very literally and trouble processing the language?
I loved your statement about your dear son..they have an innocence which never seems to fade and delight in the smallest things:D
Good luck, its a hard and often long road sometimes with all the assessments and 'negative' comments about your beloved child,take them at face value..you know your son the best..listen to advice, consider it, then you choose what is best..you are his mum and sometimes all the therapists and consultants and phsycs forget this

PDDNOS is another 'label' pervasive developmental disorder not otherwise specified (bit of a mouthful!)
Our diagnosis started at 3 finally diagnosed at 6!

Snaggles

Hi D&DD - I thought what I said didn't sound right but couldn't think why - I've mixed up two different things...lol! You see, Ryan would never have done that, he would have repeated it perfectly, and with the same tone and inflections as the psychologist!

Yes, he's extremely literal - I once said 'keep your eyes peeled' :doh: and he worried for 3 days that he might have to peel his eyes...:o

But we're gradually learning how to be very precise and clear in what we say to him, and while there are always challenges (gritting your teeth and trying to look interested while he talks non-stop at you for 40 minutes about the various styles and types of daleks....), I love him to bits, and life has improved so much since I started to understand a bit more about how he sees the world.

And although you can't change them (and for the most part, wouldn't want to anyway), I do think you can make little adjustments to their world to help them fit into it more easily, hence the quote in my sig!