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Aspergers diagnosis - how does it work?

(12 Posts)
Levantine Fri 24-May-13 07:36:59

My ds does, yes, but he doesn't have a diagnosis as yet, so don't know how helpful that is.

I'm unlucky that I have a devious ds!

PolterGoose Tue 21-May-13 22:52:21

Do others find it hard to unpick fact from fiction?

No, ds hasn't developed the skill to lie yet. When we are unpicking an incident after the fact I tend to ask a lot of "and what happened before that?" "... and before that?..." Because often the reason for the incident was way before whatever it culminated in.

Thanks again, Polter, statementing seems a nightmare of forms from the little I know. I am endeavouring to lock this information away for future use! Bad day for ds at school, he was hysterical again after fight at lunchtime. hmmDo others find it hard to unpick fact from fiction?

PolterGoose Mon 20-May-13 23:01:43

Ds is on school action plus, no statement. Plenty of children with Aspergers do have statements though, I applied, got refused and just don't have the energy to appeal, it gave school a kick up the backside though, so just applying can be productive grin

All support in school should be needs led not diagnosis based. If you get a dx for ds I can recommend some books to help him that ds has enjoyed.

Thanks to all of you for sharing, it seems as though there are several different approaches depending on the trust perhaps? Looked up the questionnaires mentioned and wondering how much is ADD/ADHD with ds. But ed psych only mentioned diagnosis for aspergers, the more informed we are the better so we know what to ask! Polter, is your ds statemented for that level of support? We were told quite clearly the school could support His needs and he wouldn't be statemented, I don't yet know what resources we might draw on via the LEA otherwise.
It is a very strange no-mans land because he could end up not getting a diagnosis. But school assure us support would be provided. Ds has reacted very well so far to discussions on how well bits of his brain work (no mention of aspergers!) he knows he is different. I have 4 dc, and he is the most challenging by far but I love his quirkiness. grin

PolterGoose Mon 20-May-13 14:24:51

ADOS is the Autism Diagnostic Observation Schedule and is a structured assessment to aid in diagnosing ASDs, there are others eg DISCO

Since dx the main support my ds has had at school has really been linked to better understanding and a willingness to treat him differently. He also gets 15 hours of LSA a week, which provides for 1-1 at playtimes, plus 1-1 and small group work and 1-1 when the other children are doing an activity he is unable to do. He is academically very able but things like small group and pair work, music, assembly, sports events and the like are very hard for him.

Out of school we have access to the Autism Outreach Team who run activities and offer support, ds won't do activities so we don't really use them. We also have access the local authority's 'short breaks' programme of activities for children with disabilities. We get DLA and I have a Radar key to use 'disabled toilets' when out.

The biggest advantage is for ds who can read about Aspergers and gain some understanding of why he is different and that he is not alone and that there are things that help. For us the OT involvement has been fantastic and has been the best intervention.

OneInEight Mon 20-May-13 09:55:51

We have just received the Aspergers diagnosis for my ten year old sons. We had three appointments with three different people at CAMHS and two appointments and observation by a community paediatrician. We didn't do the ADOS but did a AAQ? questionnaire and they also had a fairly detailed complex speech assessment by SALT. The whole process took about a year from first referral and the diagnosis was given by the community paediatrician in the end.

Levantine Mon 20-May-13 09:40:51

Hallo. We are going through the same process with my 6 year old at the moment. He too is very high functioning, very sociable, high reading age.

The school suggested autism to me and I was pretty surprised, though had always wondered about ADHD. He too has had encropesis, though thankfully under control now.

We got a referral through the GP, pretty much no questions asked. Then two consultations with community paed, in which she met him then went through a very detailed history with me. We did a conors test, as did school which showed ADHD behaviours.

We are now waiting for adoss, which should be in July.

I too have days when I think there is nothing really wrong, and then days when he is very clearly on the spectrum. Recently I had a couple of people who work with children ask if he was autistic, which I found quite hard, as it is only recently that it has become clear to me iyswim. And then there is the uncertainty of not really knowing if he is or isn't until diagnosis.

It's hard isn't it!?

I bought the Atwood book, on Poltergoose's recommendation (thank you!). When I first got it, none of it sank in, but I am dipping in and out now ad it is beginning to make sense

Hello Poltergoose and thanks for taking the time to reply! smile
Just ordered Tony Attwood's book, have been meaning to but you've given me a push in the right direction. I have a couple of books on social stories but tbh don't have a clue how to approach that element with ds.
What is the ADOS? The Ed Psych indicated that she or the developmental paed could 'send it to panel', but although we've asked about him seeing an OT I didn't know whether that was part of the diagnosis (he has perceptive issues, holding cutlery, putting a coat on that kind of thing plus fine motor skills in some areas not great).
In some ways I don't think ds is Aspergers because he is very high-functioning, he can dress himself, ride a bike, that kind of thing). But he struggles with many of the things that you mention - he is being bullied and excluded at school often which is exacerbating his frustration and meltdowns. But there are lots of days when I think he's completely NT. Perhaps Tony Attwood will help there. I fear for him with secondary, as moving house seemed to be the thing that sent him over the edge 2 years ago.
After diagnosis, what kind of help have you had from the school & elsewhere?
I have felt alternately very down about his future and relieved that we can tap into some ways to help him. Once we figured a few things out last year (my father is a paed and helped us out) I've come up with some strategies but the social skills are hard to pin down.

PolterGoose Sun 19-May-13 21:00:02

Hi accessorize flowers

My ds is 9 (10 in 2 weeks shock) and was diagnosed with AS just over 3 years ago. I found the Tony Attwood books best, they really helped me understand some of ds's more difficult behaviours as well as a lot of the less significant and somewhat charming foibles grin

Ds's assessment started with a developmental paed registrar taking a history and being convinced by me that ds warranted assessment, then he was seen by SALT and OT. There were also reports from the early years Senco he'd seen at nursery and the Ed Paych he'd seen at school, iirc school failed to complete their questionnaire hmm after all the reports were back we saw the consultant paed who agreed to do the ADOS and he was diagnosed.

Ds's most significant 'problems' are his anger, temper and meltdowns; cannot cope with change; anxiety; real difficulty in the playground and with general social skills; significant sensory problems; inability to recognise his and others emotions; obsessions; easily frustrated; disorganised; poor motor skills; still needs help dressing, toileting and bathing... Lots really.

Don't know if any of that helps, will try to answer any questions.

Good luck and do keep posting smile

DS1 (9) is being investigated for ASD, we requested a referral via his gastro-enterologist (he has Encopresis) and saw another paed in March who asked us to request an Ed Psych via the school. The school were pretty surprised as other than his attention difficulties, disorganisation and some social skills issues, they didn't think he presented as ASD. However, saw Ed Psych on Friday and she & the SENCO seemed to think we should seek diagnosis for Aspergers. I know that it goes to panel and he has to meet the criteria but specifically what are the criteria - can someone point to some good resources please?
I think he's ASD, I'm just not convinced he will be diagnosed as the obsessional trait doesn't seem very strong with him and the Ed Psych mentioned that. However, he's changed completely in 18 months/2 years, I wouldn't have imagined we'd be looking at aspergers back then. So can those traits further develop as he gets older, as his sensory issues have for instance? I have read several books on ASD/Aspergers but I find it hard to recognise my son in the descriptions particularly as he's disguised things so well that the school and all my friends are shocked at the idea he could be on the spectrum. I also have my suspicions about my 6yo ds2 tbh, so I want to know as much as I possibly can. DP & I have felt for years that we were just imagining things wrong with DS1, this is the 1st time other people are agreeing with us so I'm a bit shocked. We do feel it would be helpful to have a diagnosis to assist with support in primary, the transition to secondary and coping with secondary etc. I feel pretty emotional and overwhelmed by it all and any advice welcomed.

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