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Does anyones child suffer from Aspherger syndrome a form of Autism?

34 replies

misscarrick · 16/10/2006 10:54

My 3 year old has to see the Health visitor today for a review. We think he might be suffering a mild form of Autism. All information welcome.

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Socci · 16/10/2006 11:04

This reply has been deleted

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misscarrick · 16/10/2006 11:05

Thanks

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PeachyBobbingParty · 16/10/2006 11:05

Hiya Yes, my son has AS / HFA as his diagnosis.

You Could you e-mail me on peaches and cream 04 at bt internet.com and I can answer questions for you, I can also recommend telephoning the national autistic society,a s they can send lots of excellent information

caroline3 · 16/10/2006 11:13

Hi my ds has a diagnosis of AS/HFA. Tony Attwoods book on AS is very good - explains everything.

Its excellent you have such an early diagnosis. This should prevent a lot of problems with nursery/school as people will be aware of ds's problems.

I know its hard when you hear it "officially" even if you have suspected something was wrong for a while. However the outlook for AS/HFA is good and from what I have heard most go on to "normal" adult life (whatever that means!)they are the sort of people who in the past would have been considered a bit eccentric. Good luck, keep posting, its really helpful to chat to others in the same position.

PeachyBobbingParty · 16/10/2006 11:47

Can I recommend www.bibic.org.uk, as a consideration? Not for everyone but works for our son (the gluten free diet, for example, is controlling his flapping / noises immensely)

diNOLOOKINGOVERYOURSHOULDERsau · 16/10/2006 11:50

Hello misscarrick, my DS1 (now aged 7) was diagnosed as having high-functioning autism when he was 3.5. An early diagnosis can indeed be very helpful. We've been very lucky in that DS1 is doing very well in a mainstream school and most of the behaviour that caused us a lot of concern when he was three has now disappeared.

Do post a bit more about your 3 year old?

Hamandcheese · 16/10/2006 19:50

My DS1 was 'picked up' just before he was 3. We don't yet have a formal diagnosis (1 yr later) but partly because we made clear in the assessment process that we didn't want one (weren't ready then) - however, it is definitely AS he's not yet been diagnosed with!

The year from age 2-3 was dreadful. Age 3-4 getting better, though still some big difficulties: he is a fanstastic child - along with my other son the apple of my eye, and I deeply enjoy his company.

I could post more about his difficulties, assessment and the support he's benefited from. Or about the disappointment we've felt as we've realised that we don't have a 'typical' child in him. Or the heartache as we try to get the best educational placement and support for him. Or the bittersweet joy of having a 2nd son grow up to respond / behave in ways DS1 never did.

I would absolutely recommend the Tony Attwood book. And post again here ..... but basically, I have been blessed with two super (but different) sons whom I love deeply and really enjoy.

coppertop · 16/10/2006 22:02

I have 2 boys who were diagnosed with AS/HFA at a similar age to your son. I'd be happy to help if I can.

misscarrick · 17/10/2006 09:22

We went yesterday to see the health visitor and she thought that Ds did not show any sign of a child with autism but she is going to refer him to a paediatric consultant. So we just have to wait another few months.

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KarenThirl · 17/10/2006 10:43

Hi Miscarrick. I have a nearly-eight year old who was dx'd with Aspergers this summer, though it's been on the cards for a year and a half so it came as no surprise to us. I can second (or third, I've lost count) the recommendation to read Tony Attwood's book Asperger's Syndrome - A Guide For Parents and Professionals, which you can get on Amazon. He's 'the man' when it comes to AS so you couldn't get better explanation.

Your HV isn't qualified to decide whether or not your child is autistic. There's a very rigid diagnosic assessment which involves psychiatrists, psychologists, speech and language etc and it can take a very long time to get a dx because not all the professionals know as much as they ought to about autism and can miss the signs. Some are quite stereotypical in their approach - numerous parents will tell you that they've been told by a professional that their child couldn't be autistic because s/he made eye contact. That's not one of the diagnostic criteria but it's frequently associated with autism so if a child makes good eye contact some say it's an indicator that the child is neurotypical. On a personal note, my son's dx only came after a lengthy assesment of almost a year which proved inconclusive, followed by an expert second opinion assessment at a specialised autism clinic. The team there knew straight away (and J was having a particularly good day, too!), whereas the local team were adamant he hadn't autism at all.

It would be worth checking out the NAS website as well, particularly their book list. You'll get a lot of useful information there, lots of questions answered. I'd imagine you're feeling a bit overwhelmed at the prospect of your boy being autistic but knowledge is power, read as much as you can on the subject and you'll know more about what might be ahead.

earthtomummy · 17/10/2006 10:45

Hi Misscsarrick, our DS has just got DX from paed. of mild AS. We are choosing not to use a label at the mo. - although it is q. hard with school not been terribly helpful. The Tony Attwood bk. is good and I found the Nat. Autistic Soc website useful - rang lassyt wk as son is refusing school in the morning. Got to dash - all 3 at home as hols anfd chaos, but will drop in later.

slaughterfalls · 17/10/2006 10:47

My ds (5.8) is currently under assessment, waiting for a DX that is likely to be AS.

Blossomhowl · 17/10/2006 10:52

earthmummy ~ just wondered why you wouldn't use the dx "label"? Do school not know then?

diNOLOOKINGOVERYOURSHOULDERsau · 17/10/2006 10:55

misscarrick, do please feel free to keep posting about your DS, even if you don't get to see a paed for a few months

earthtomummy · 17/10/2006 14:44

Blossomhowl, my DH and I have some diffs on this. Given that DS is only 5 we felt that giving him a label would be very fixing. DH works in CAMHS specifically with schools and I think is utterly dispirited by what he sees every day. I felt that if we told school then they would consider how they manage DS in every way. DH felt it would be a label that would bring no benefit. We had a really lengthy discussion with the Dev. Paed. who told us she has a son who's 15 who she believes has AS and has been selectively mute at school since 5. She has not used a label with him. Also the ed. psych in DH's team understands her son has AS but has also managed without a label (he's about 16). TBH I have mixed feelings. I deal with school on a daily basis and find it diff. - eg,. when I got called in over an incident caused by DS. INeither of us want him labelled as 'naughty'. however, school are aware he has 'social comm' diffs.' and have a copy of the letter from the paed. so have an understanding of his needs. TBH the more I see the more I see DH's pt. that a DX would make little diff. to the way school approach him. I think we have agreed to see how it goes and we are seeing the paed. again next yr. We have the option to access her at any time for a formal dx. should we wish / need to. Maybe it is us being reluctant to accept the dx. I don't know. He's been doing so well with the dyspraxic uissues he has - really into drawing now - but this half term has been a nightmare so far. He's been aggressive with his sis, having major meltddowns for little apparent reason, diff, to contro at times and utterly fixated on Lightening McQueen et al. (I dread the arrival of new Disney films!!). Sorry - a rather long answer to a short wuestion. Well done if you get this far!!

sniff · 17/10/2006 14:50

yes my son has AS he is 8 and we got the diagnosis in august

caroline3 · 17/10/2006 16:10

earthtomummy, as long your ds is getting the help he needs at school then don't worry. It helped me get a diagnosis because I think the school treated me more seriously after that. Also it helped me settle things in my own mind. But it is quite a personal thing and I understand if you don't want to go down that route.

suedenley · 17/10/2006 19:27

Hi my ds is AS and id like to second that your hv is in no position to give a dx if you have concerns then follow your gut instincts and try every option to get to see a consultant this could be through school or school nurse or via gp if he or she is helpful,because the sooner you get a dx then the sooner your ds acn start recieving the help and support he requires because (and this isnt said to cause you alarm) although the dx may say mild autistic spetrum disorder there is nothing mild about it and the sooner these kids start recieving support in school and with social and communication difficulties the better chance they have with inclusion.
Also it means you will learn to understand why your ds does some of the things he does and you can learn how best to deal with him in a positive way for him and you . Good luck

Oracle · 17/10/2006 20:27

earthtomummy said DH works in CAMHS specifically with schools and I think is utterly dispirited by what he sees every day.

OMG this is dreadful. What hope does this give any parent who needs to go to CAMHS. Some parents have children with autism who self harm and have other mental health issues, mostly brought about by schools, if people working in CAMHS feel like this then where does that leave the rest of us?

Labels are for Jam Jars not children but sadly for many parents who have a child going through the system with autism - which is autism the criteria for a diagnosis is the same criteria what ever end of the spectrum a child is said to be on - the label is needed to help the parents fight for what their child needs. And while I do believe that some children do manage to go through the system without support others like my 11 year old son crash out of the system and are never able to return. So lables can and do have their uses.

earthtomummy · 17/10/2006 20:33

oops oracle - perhaps I needed to be clearer. DH is a therapist in CAMHS and runs a health funded team that specifically link with schools, GPS etc for referrals. His job is therapeutic work with families and kids and prof. consultation to schools and other professionals. He is just not impressed in gen. by what he has seen in the schools on his caseload. So he has to attend IEPs with families and relay his assessments to sencos etc and isn't that impressed by the rresponse his team and the kids and families he works with often gets.

earthtomummy · 17/10/2006 20:34

meant to say that CAMHS seem fine, he is just dispirited specifically by the way in which the educ. system (in our area) manages kids with ASD.

sis · 17/10/2006 20:44

My ds, aged seven is diagnosed as being on the autistic spectrum. He goes to a mainstream school and was diagnosed when he was about five and a half years old. Having the diagnosis has, in our case, case helped a lot as we have been able to access occupational therapy for ds since his dx as well as a 'hand writing club' run by occupational therapists last last year which has helped ds a huge amount.

Whilst the school tends to promise all sorts of wonderful things each year and delivers about a quarter of it - the dx has helped when we have had particularly good teachers who have taken on board ds's needs and practices sign language and done yoga with the class both of which , I believe, have helped ds a lot.

Oracle · 17/10/2006 21:05

Sorry earthtomummy it must be my literal thinking - I know that CAMHS in my area are also dispirited with the eudcation system.

I'll go back to sleep now.

Oracle

Dottydot · 17/10/2006 21:58

Can I do a bit of a thread hijack and ask a probably very silly question?

Is delayed writing sometimes part of AS/Autism? I'm only asking because from time to time I worry about ds1, who has shown some signs in the past, but seems to be managing fine in reception class. His teacher though expressed some surprise that for someone so intelligent his writing's not as good as she thought it would be. She was being very kind - his writing's crap! He has difficulties in other kinds of communication - just wondered if this might be another indicator?

caroline3 · 18/10/2006 10:19

Dottydot, delayed writing can be one of the symptoms of AS. My ds has terrible writing, only learned to write his name by the end of reception. His writing is coming on now but still the worse in the class although he is bright.

However lots of kids have problems with writing who don't have AS or anywhere on the spectrum. Eg. a friend of mine has a kids with diagnosed dyspraxia and he has had delays in this area. You need the "triad of impairments" to be diagnosed with AS I think. Why do you think your ds might have AS? NB Appreciate it if you don't want to go into detail here however!!