Aspergers/ASD support thread

Sultana

It's worth emphasising to your HV/GP that there is concern at Nursery. I didn't get very far with mine until I uttered the magic phrase 'Playgroup are worried'. (My son now has a diagnosis of ASD).

Dummie_2

I'm trying to put together everything in preparation for my meeting with our key worker and the teacher on Wednesday. Want to list everything but worried that it's unrelated but on the other hand don't want to miss anything out!!

I'll start by saying that I'm concerned about DS's behaviour. In particular

1) the way he seems to be in his own little world most of the time
2) the way he stares blankly and takes no notice of anything else around him
3) the way he'll use my hands to clap and point rather then use his own
4) the way he'll sit and press the same button repeatedly on a toy for over 30mins
5) not responding to us calling his name but will respond to other noises
6) how he won't eat food that he doesn't recognise
7) his lack of communication skills ie no words whatsoever and not understanding 90% of what we're saying to him
8) his lack of social skills and not wanting to mix with other children
9) his lack of eye contact

I'll then say that during a visit from my sister, she mentioned that she saw similarities in DS and in the son of her friend who is Autistic after which I logged onto the Autistic society website and it does indeed looks like DS is showing early signs of Autism.

I'll mention that I am not really clued up about Autism and will ask them if they've had any experience in dealing with Autistic children. If they say yes then I'll ask them for their opinion on DS. If they say no, then I'll ask if they can advise where I should go from here to get an assessment done.

What do you think? Is the above OK? Does anything need to be added/deleted?

A few of you have mentioned the nursery putting together a report. How do I go about this? Do I just ask them to put together a report on DS for me?

Thanks and hugs to all of you.

Cazzywazzywoo

I think your list is very good and clear.
I also think you are right to be raising these concerns as early as you can. If it does turn out that your son is autistic the earlier you get the official diagnosis the quicker you can start to get the help he needs -for example special needs playgroups, DLA.

I tackled it in a very similar way (albeit 10 years ago)-took a list of concerns to my health visitor and got referred to an audiologist first to confirm he could hear. Then we went for blood tests (checking for genetic conditions like Fragile X) and to the hospital for a CAT scan.

Then I also took some leaflets on autism from the NAS to my paediatrician. Like you I had gone cold when I read the symptoms -my son matched almost all of them too. I said 'I am concerned that my son is autistic' and he replied 'yes I think he is too' -I was shocked and burst in to tears! But it was also a huge relief after so much uncertainty -and believe it or not things started to get better as I could focus my efforts on getting him the best help available.

Other posters are right -there is an increasing awareness of autism and the provision is increasing -but unfortunately there is a need to fight for resources still.

I hope this helps -if you want to email me then feel free -there is life after autism -I promise!
Cazzy

andycarmi

Hi Dummie. I worked for a LEA's LSS. If you don't get anywhere with the HV or GP. As a parent you can make a referral you would need to submit a letter detailing your concerns and request an assessment to the Special Educational Needs Team. This should take no longer that 6 weeks to get a written reply.

Also your nursery can make a referral. I would get nursery to do a report and some obsevations as evidence.

Hope this helps. Good luck. Andi.

Ellie2758

Dont take the word of a paediatrician as gospel either. My daughter was referred to one at age nearly 3 and he simply refused to take our concerns seriously. Somebody had told him that I had mentioned the word "autism" and that was it - they HATE it when patients try to find out stuff for themselves. Anyway, we then had a wait of over a year before i approached the HV again. This time we got referred to a specialist in autism at a centre where several different people assessed her (psychologist, psychiatrist etc) and they diagnosed autism there and then.

I know this is all an awful worry but my daughter is 18 now and at college, she even has a part time job. I have made so many lovely friends thro autism support groups. One friend's boy, who was more severe than my daughter, now works as a support worker in a special needs school.

It isnt all doom and gloom - you will always find somebody to talk to at your local support group and it's a great way to make friends if you ever move to a new area. Yes, there is a whole lot of cr*p attached to it as well, but then nobody knows what the future holds. I know kids who were at school with mine who are now on drugs. Anything can happen to anybody's kids.

mega hugs

Ellie2758

Sultana wrote:

It's worth emphasising to your HV/GP that there is concern at Nursery. I didn't get very far with mine until I uttered the magic phrase 'Playgroup are worried'. (My son now has a diagnosis of ASD).

Yes, I forgot to say. After the initial diagnosis somebody from the team visited playgroup to observe my daughter. It was after this that they changed their diagnosis from "mild" to "severe". However, she isnt severe at all - she actually has Asperger syndrome. Kids on the autistic spectrum grow and change just like ordinary kids. Some improve greatly over the years, others dont.

clairefun

My nephew has Asbergers and as 14, just broken up with his first girlfriend (she was ever so pretty but they want to move on!), he's obsessed with Doctor Who, spends most of his time playing computer games. He's doing well in school and recently got 2 medals in JuJitsu. He also will not stop talking once you express any vague interest in, for example, doctor who (like I did - oops). This all from a boy who was completely quiet an aloof as a child & toddler, who never cried or indeed really responded to much of anything. My sister has a new baby now (nearly 2) and she's discovering the terrible two's really can be noisy and full of tantrums - she always wondered what all the fuss was about!
So whatever comes back, it doesn't have to be a big problem. We treat Joe pretty much as you'd treat any 14 year old boy - he's certainly as messy and smelly and argumentative as anyone. He has his moments - usually very talkative ones - but we can forgive them. It really doesn't matter when it's someone you love, as it's all part of what makes them uniquely them, irrespective of labels.
Despite this, I hope you can find out for sure one way or another soon, it must be hard being so aware of your sons actions & behaiours and not knowing what is causing them, don't let it stop you enjoying him anyway. Best wishes for you and for him.
X

Claire

Dummie_2

Thank you for all the encouragement. Thanks for sharing your experiences and thanks for telling me it won't be the end of the world should DS should indeed be autistic.

Today I got proactive and called our primary care trust and asked them for the number of our local S&L therapy service. Didn't know you could self refer. Always thought everything had to go through the GP. They will now send me a parent referal form to be completed.

I know the S&L therapist from Sure Start will contact me hopefully early next year but she only holds classes for groups of children. I feel one on one therapy will be better. Or maybe we could do both. Who knows. I'll cross the bridge when I come to it.

It's funny. DS babbled alot today. Anyway, I'll still press ahead with the S&L therapy because I'm sure, if not anything else, DS should be doing more than just occasionally babbling at 23mths.

I'm beginning to think I don't want the HV to come on the 12th. Mostly because I really don't like her attitude and because I don't think she'll do anything for me. If I am able to get the ball rolling without her why put myself through the stress of having to entertain her? What do you think?

:A

Nikki

This brings back memories. I was treated in a similar fashion by my HV when I felt there was something 'odd' about DS1. I was finally listened to by a p/t HV in the same practise and she agreed with me and got the ball rolling. It took another 5 years to get an ADHD diagnosis, but even now I don't feel this is the full story because he still displays 'odd' behaviours that don't fit with ADHD. I still seem to get ignored by professionals about this. He is obsessive about weird things, has constant temper tantrums if things don't happen the way he wants, or he doesn't get what he wants. He can't see things from anyone elses point of view. His play(with toys) is odd too and hasn't developed at all, involves smacking things togther and that's it. He also has difficulty socialising with kids his own age and is more able to get on a level with kids as young as 2. He is 11 and I'm also beginning to wonder about ASD.

Dummie_2

It's very contridicting isn't it. For example, when I called to ask if DS will have a 2yr assessment. The answer was no unless I requested one. Doesn't this mean they are expecting parents to be aware of any problems and to bring it up? If so then why the attitude when we do bring it up? If they were not expecting parents to be aware and bring up any concerns then surely they should assess ALL toddlers once they reach 2yrs!

It makes me so angry.

Nikki, I'm sorry you're still not getting to the bottom of DS1's 'issues'. We'll fight this together. Thinking of you.