Please let merant and try and sortme if u can!!!!

[Jambuttie]

OK here goes

I'm a regular poster here, with 2 sos all with additiona needs

DT1(4) was seen today by the autism specialist and this is the history for all who dnt know.

ok so twins arrived at 29 weeks and had a difficult start, dt1 strugled more than his brother. DT1 was VERY demandng as baby we often thought he would hve loved o bean only child, however despite his prematurity he reached al his milestones ahead of time

From 1-1.5yrs he threw MJOR tantrums, NEVER played with his toys blah lah blah, when he was 2 I went t the health visitor as we could no longer copewit his violence or his lack of danger awareness- thre twin down stairs,tried getting out upstairs window, almos set house o fire the list is endless.

Anyway assesmnets began, most thiking autism, then changing their mind, then thinking autism.

So for 3-4 yrs this has went on and finally today we see autism specialist, who said

" While it's very clear that DT1 has many autistic traits, he isnot autistic, however, had he been just a couple of yrsolder we would have confirmed him as having aspergers syndrome. Unfortunatly as he is jus 4 weare unable to do that however in a couple of years should we meet again I will have no hesitation in confirmin this"

WTF!!!! If this is his difficulty help him now FFS. Meanwhile we contine with the violence, behaviours etc and can get no assistance for couple of yrs where is te logic in that?

Has anyone else had this? We feel delighted but furious at te same time

any advice would be greatly appeciated

TIA

Jam
x

[Jambuttie]

sorry for some missin letters dunno whats wron with this keyboard

[Twiglett]

Can you possibly see a different 'specialist' because I know of children being diagnosed with AS at earlier ages than 4 so am very very surprised at that particular snippet of 'expert sentiment'

[bonkerz]

you have got to push them. If he is too young to diagnose Aspergers they should still acknowledge that he has severe autistic traits.
To me it all seems its down to money. My DS is 7 and 4 weeks ago we were told he was normal.... Noone has seen him since that diagnosis (No asd or ADHD present apparently) BUt despite this and with some HUGE nagging, complaining and pushing from us they finally agreed he has ODD and is on the Autistic Spectrum and should be treated accordingly!

[TotalChaos]

could you nudge towards a diagnosis of PDD-NOS - which is where there are bags of autistic traits but not quite enough for diagnosis of conventional autism. Do you need a diagnosis to access help/statementing etc for him? (would have thought yes, but you never know)

[bonkerz]

PDD-NOS is where i would be looking too. Atleast then you could request the further assessing later on adn your son should be able to access help etc to help with autistic traits.

[Twiglett]

of course failing to diagnose means that there is then no statement and no need for additional support within the school system

or am I being cynical?

[daisy5678]

But you can get a statement without dx. My son had no dx at all when he was Statemented at 3 - subsequently dx'd with ADHD and ASD but hadn't any inkling of the ASD then at all, even though the ADHD dx was in the pipeline.

I thought the only difference between High Functioning Autism (which can be diagnosed at any age, afaik) and Aspergers was whether or not there was a language delay. But then some people have Aspergers as the 'mild' autism, so it all comes down to postcode lottery as ever!

I would push as to which diagnostic criteria is being used as the DSM-IV criteria does not mention age! Good luck.

[bonkerz]

as ever wise words givemesleep!

[dorisofdevon]

My Dsis has d nephew with autistic / adhd traits he is 3 and although not diagnosed has full support 1to1 full time at pre school etc dsis had asucessful claim for DLA due to his care needs all without disgnosis,

The disgnosis is not necessarily going to help him but support and refereal to educational pych etc and the full and proper support of your specialist will make all the difference, would suggest you either return to same specialist amed with a full list of what you feel you need to support his development or ask for referal for 2nd opinion

[bullet123]

Jam, would they be prepared to give a temporary diagnosis of atypical autism/pdd-nos? Then change it to Asgergers later if they're convinced they won't diagnose him with that until he's 6. The atypical autism/pdd-nos might ensure he gets some help now.

[bullet123]

Or what Tc and bonkerz said.

[catok]

I had a major battle to get a diagnosis of Asperger's at 6 -they said DS was a summer baby and immature - then offered a 'working diagnosis' - then when pushed wrote the diagnosis letter. Ask how you are supposed to cope for another 2 years without support and suggest they are failing the child by not offering a diagnosis. I agree with Doris - have a big list of everything you need and don't leave until you have answers!
A friend had HFA dx for dd aged 4 - with normal speech development she now has Aspie dx aged 7.

[TheodoresMummy]

Sounds ridiculous, Jambuttie.

Not an expert, but DS (4.5) Got his DX of Aspergers about 6 weeks ago.

Actually he has a working DX because he is ever changing and I didn't want anything final yet, but apparently it allows us all of the same help that a DX would.

If you are not happy with the outcome then talk to the pead. Tell him that you know that other pead's DX younger than 7.

[Jambuttie]

PDD-NOS ? not sure what that is.

Morning ladies and many thanx for your pots, have woke ths morning fter a real restlkess night and fel that I have failed my son!!!!!

I fear that he is going into primary school after summer and he doesnt cope- currently at nursery he gets mostly 1-2-1 attention from his teacher, how is he meant to cope in school!!! Will we be called all the time as we were at nursery saying how he's hit, bit, punched, kicked, screaming???

DH had taken DS1 to a bike group(run for kids with motor co-ordination probs) and was chatting to another parent about it, they too said ask for 2nd opinion. That is the route that parent had to do when she was told her kid wasnt autistic- 2nd opinion dx autism and adhd!!!

Sometimes I feel that thes "proffesionals" see what they want and as I said to them yesterday if they took DS2 for a week imn sure they would be banging on my door within hours to give him back but in reality they have to spend more than an Hour with them to see that kid for real. Yes I too think its all down to money, which is irrelevant to me. Mt concern is if my son needs much more care at home than his brothers and much more care in nursery than other kids how is he to manage in a larger class in primary school?

And if anyone was to say he was just a little shite I wouldn't be herld responsible for my actions he is my son, my bay and I will protect him as much as I can but I too am struggling along with my hubby and other 2 sons to cope with him, the past 4 yrs have been tough and seem to be getting harder the stronger he becomes.

We were at a wedding last week and one of our nieces went into DT1 "space" he stuck the head in her and has fractured her eye socket!!!!!! What next?

[TotalChaos]

You've not failed your son. Sounds like the underfunded system has provided bugger all help for him, and doesn't sound like nursery are being particularly helpful either - if they are having so much trouble dealing with him they should be doing more than moaning down the phone to you. Have you spoken to Senco at the school he is due to start at to explain your concerns about him? They can liaise with nursery now to start thinking through what to do when he starts in September. Have nursery spoken to you about getting any 1-1 support for him? Also are you aware that every LEA has an organisation called Parent Partnership to advise parents of kids with concerns about their kids with SN? Because they are funded by council. they aren't 100% impartial, but are a good starting point for help/info about the sytem.

[TotalChaos]

info about PDD NOS

www.med.yale.edu/chldstdy/autism/pddnos.html

[pagwatch]

jambuttie
i don't know what your financial situation is but we were helped by getting a private ed psych to look at our boy. he was violent but had lost all language too so the 'system' responded quite quickly but, nevertheless I got an ed psych to do a full evaluation and report so I had that to help me when I was dealing with the LEA. He also gave me good ways of dealing with my son who was violent and aggressive at that point.

Sorry - that may be an unhelpful suggestion but thought it may be relevent.
You have definately not failed your child. Don't let yourself start thinking like that because it just makes you feel more helpless. You are doing really well fighting an underfunded and inadeqaute system. You are doing fine.

[Jambuttie]

Thanx again for all your posts.

We are going to ask for a 2nd opinion on DT1. Have been passed a number of another consultant by a parent at a bike group my eldest son goes too

App the dr we seen on friday has had 4 complaints in the past month against her for missed/incorrect dx