Aspergers/ASD support thread

Taffyscot

HI Ellie yes he was oblivious to the things that he did and how they made us feel. Yet when I told him I was leaving he said he could look outside of himself and look inside at the situation and the family and could see what others thought of his actions and could see he was being a jerk. He said he could finally see what others saw and he was ashamed and did not blame me for leaving. Funny old world isn't? It takes something as traumatic as that to make him realise that his indifference and indeed his difference to others could have been averted.

Dummie_2

Hello Everyone. Hope you are all well.

I've just realised that it's nearly 1 whole year since my very first post on this thread. Time has flown by and happily we've achieved so much during this time.

Aidan started at a specialist nursery for autistic children last week. He'll be attending 2 morning sessions each week. The teacher/child ratio is great. It's 2/1. But in Aidan's class there are only 4 kids and the 2 sessions he's been there so far there were 4 teachers :T . They started him on PECS during snack time on the 2nd day and said he was really quick to grasp the idea and seemed really happy doing it.

Aidan now waves 'bye bye'. He also points and claps his hands and will attempt to nod his head for yes. He regularly says 'duck, apple, banana, yoghurt and read.' He will also say 'mummy, daddy and yes' when he's really fraustrated about something and can't make himself understood. He's now attempting 'Percy (from Thomas & Friends), biscuit, pear and chocolate.' I've heard him say 'I want biscuit, what's that and what you doing' once before. He really has come such a long long way and we are so proud of him.

Socially he is still struggling and still ignores most people or will shy away from them. Also, the differences in him and other children his age are becoming more apparent as time goes on. This breaks my heart and I'm so scared of the furture and what it holds for him.

Still waiting for the Early Bird programme to start in Jan. Have also been referred to a More Than Words programme that will start in Feb.

At the moment kind of feel we've been left on our own a bit. After the dx we received some help from the MDA team but it seems that once we knew that Aidan would be attending the specialist nursery it all stopped.

Aidan's melt-downs are getting more severe. Taking him out is becoming a nightmare and something that I am beginning to dread. He refuses to walk most of the time unless he's motivated to do so and runs into every book, toy and card shop we go past without so much as glancing to see if we're following or watching out for cars or other people. It's then a nightmare to get him to leave these shops but it has gotten easier since he learnt the meaning of 'bye bye'. He also loves going into shoe shops and rearranging the shop's display. This has caused me many a red-faced moment...LOL.

We've just toilet trained Aidan :j :T . He's not in nappies during the day now. He's also beginning to hand guide me to the toilet when he needs to go so very proud of that achievement!

Eating is another on going nightmare. Breakfast which has been the same thing for the past 18mths is a doodle. But most lunch and dinner meals I have to hold my hand over his eyes and squeeze his nose to make him open his mouth to get him to eat the first spoonfull. Once he's tasted the food he's usually fine but it's just getting that first mouthfull in. At home I'm fine but when we're out people do tend to stare because of course he's screaming at the same time so I probably look like I'm force feeding him which I suppose I am depending on which way you look at it so I get really stressed.

Anyway, hope you guys are still here with me. Thank you for reading.

Take care.

Love

Dummie

Savvy_Sue

Hugs dummie, I think it will continue to feel like one step forward and two back at times, but children like your DS do 'grow up' and change. What the future holds for them we can't predict, but enabling communication must make such a huge difference.

Bye bye!

duchy

I'd ask the GP for a referral anyway. Probably take a while to come through.
I'm a great believer in Mother's gut feeling too. I was made to feel I was a bad parent and that my marriage break up was behin d my son's behaviour issues and difficulties (despite the fact they had been there before there was any question of a split). I knew something was wrong and persisted and we ended up with a diagnosis of Aspergers Syndrome. However a diagnosis enabled us to access a lot of great support. DS is now 16-at a private school (paid for by LEA as he can't cope with the huge high school enviroment) taking GCSEs with mostly predictions of As and the expectation he will return for AS levels next year. A diagnosis is just the start of the journey and is often a positive thing.
As for fighting-you may as well get used to it-chances are you'll have to fight anyway. Your son will need you to be his advocate and schools listen to parents who won't shut up and go away quietly-You do what you have to do for what's best for your child !

mummy2one_2

Hi Dummie,

I just thought I'd post as I read right through this thread as I have started at the same point as you did on your OP. My DS is 2 at the end of November and I have lots of concerns with his development, flapping, repeated behaviour, no language etc so I had an early 2yr assesment which has led to SLT, Audiology, Dietician. I have had the SLT last week & she recommended referal to Autism specialist team because of my worries, she also gave us help with play ideas and makaton. The dietician is on 27th November (DS can't feed himself properly & struggles to hold a cup etc) Not heard from Audiology but SLT lady didn't think that he couldn't hear as he responded to her calling his name a couple of times and also to sounds etc.

So I guess I just wanted to say thank you for the thread & that it gives me hope & courage to stand by my convictions.

Snaggles

Edit - I started this thread originally to ask a question about how to find some info for my son's ASD assessment, but it has become a massive source of support through the process of getting a diagnosis that I have changed the title of the thread to reflect that - hope no-one minds.


Hello!

Not sure if this is the right place for this really, but here goes....

I have a 7 year old son who has suspected Aspergers Syndrome/Autism Spectrum Disorder. We are in the process of having the assessments/observations at the moment, and one question that keeps cropping up is 'did you have a normal delivery?'.

Well, it seemed fairly normal - I don't remember much about it at all, but I think he was (possibly too much information, sorry...) stuck in the birth canal for an awfully long time, and I nearly had to have a forceps delivery. And I also remember hearing words like tachicardic (sp?), bradicardic (definitely sp!), and the first Apgar score was a bit low for some reason but then the second was okay....but again I can't remember why.

I know I should have asked at the time, but to be honest, they never said any more about it, and I was just so glad I'd survived it all and was holding my little baby so I never thought about it again until now.

Anyway, rambling .......my question is - can I see his birth notes after all this time? And if so, who do I ask? His GP, the health visitor, the midwife, the hospital, the PCT?

I'm not trying to find out if they did anything wrong by the way, or thinking about suing them - just want to find out if there was anything unusual about his birth so I can answer the questions I'm being asked.

If anyone can point me in the right direction, I would be ever so grateful.

Love Snaggles xxx

Edited to add a glossary of abbreviations used - I will add more as I think of them:

ASD/C - Autism Spectrum Disorder/Condition
AS - Aspergers Syndome
SENCO - Special educational needs co-ordinator
SALT - Speech and language therapist
CAMHS - Children and adolescent mental health service
PALS - Patient Advisory and Liason Service
ADHD - Attention Deficit Hyperactivity disorder
ASPIE - Affectionate term for a person with Aspergers
NAS - National Autistic Society
DX - Diagnosis (I think?)
SAR - Subject access request
EP/Ed Psych - Educational Psychologist
MMR - The measles, mumps and rubella vaccine
LEA - Local Education Authority
IPSEA - Independant Panel for Special Educational Advice
HFA - High Functioning Autism
IEP - Individual Education Plan
TA - Teaching assistant


(if I've got any of these wrong, give me a shout and I'll correct them)

suki1964

Yes you can. Ring the medical records department of the hospital who delivered you. They will send you a form to fill in. I think (been a long time) that they can charge a £10 admin fee for searching them out. They then send them to all the consultants whos care your child was under for them to ok the release then you go in and see them or you pay per page for a complete copy.

Strapped

It can cost a lot more than £10 as you have to pay for photocopying. My notes from son #1's birth came to about £55 in 2002! As there was so much due to a complicated pregnancy and delivery.

Sorry, I'm just off to bed but in the morning I'll post an example letter that you may find useful to quote on the form when requesting your notes (as it's helpful to spell out exactly what you are requesting - sometimes a hospital can interpret a request for "medical notes" to mean strictly just that, whereas you will want copies of any notes (handwritten or typed), memos, letters, scans or print-outs from medical equipment relating to you and your son).

anewman

Tachycardia is high heart rate http://en.wikipedia.org/wiki/Tachycardia Bradycardia is slow heart rate http://en.wikipedia.org/wiki/Bradycardia
I had no idea what Apgar score was until reading this http://en.wikipedia.org/wiki/Apgar_score

Being 7 years ago I don't think they will necessarily have the records stored but it's worth a try. As for the Asperger Diagnosis, I don't think the birth details are critical to diagnosis itself (I've not known it to be and I've read a little around it), although it may well point to a different diagnosis. You shouldn't feel bad giving the best account that you can recall and saying "I think" etc. They won't expect you to remember every single fine detail, and it seems to me like you've remembered quite a bit.

Snaggles

Oh, thanks very much for that both of you. I don't mind paying an admin fee, although hopefully there wont be too much of it to photocopy!

That's great if you have a sample letter Strapped - it would definitely help if I know the right question to ask.