Floored by EP's comments

[RinkyDinkyDoo]

DS dx when 3.8 months with ASD,now just turned 5. He started an assessment unit in Sept 2011( our decision as we got statement as we didn't think MS would work for him) and he's made really good progress,school write really positive comments in home school book and we've noticed his language has really improved (consistant 4/5 and longer word sentences) as he can express what he wants,makes himself understood,although sentences not always grammatically correct.
Anyway,we met with school EP today (our first meeting) who had worked with DS a few weeks ago. His first words were "as you know DS has severe autism" well no we didn't. he could see our shocked faces and proceeded with "well I tell it how it is"

We talked and shared the progress DS has made at school and home,hemade notes,as DS statement annual review is next week.At the end I said well see you next week,he said I won't be there,so I said but your report will, "Erm no, I won't have written it by then" so I pushed him and said we would really like DS to remain in the unit next year,to which he replied, yes he thought that would be best for DS.
The one word that has stuck with us is 'severe'. why when DS dx was made, was the word not used then,as he has come a long way since then ? I googled severe autism and DS doesn't fit with what I read.
What constitutes severe?

Oh god. Just ignore the idiot.

I think the whole ASD thing is a lot more complicated than that anyway.

Ds was Dx moderate-severe, people at his school say he has aspergers, others say he is HF with severe aspects.

ASD is fine as a label. You decide where he is, what his needs are and stick to you guns. Don't let the silly EP reduce your expectations either. You sound proud of what he has achieved and hopeful for the future. With parents like that the prognosis is good.

Thanks for that reply Star,much appreciated.
I thought he was an idiot/twat and had not really got the measure of Ds,and contridicted himself. By the end of the meeting he was telling me I should start teaching him to read.
But the main thing is the recommendation for another year in the unit.

DS is severe ASD under the DSM criteria.
he is 5. He has similar level of speech to your child.
His IQ is normal though and he can learn quickly when motivated
That is also where he is now. He is less severe than a year ago and when he is working with his therapists he presents more in the moderate range because therapy is so structured and boundaries so clear he 'ups his game'
I hope he will continue to move up the spectrum as he gains more skills to manage situations. This is not a set diagnosis, children do develop and improve.

There is a consultation in USA about new criteria which intends to make the diagnosis more specific by giving a severity rating. see here under severity label. So this is proposed new criteria it has not been decided yet that it will definitely be worded like this.

It is also possible to be mild, moderate or severe in different parts of the triad. So for e.g. a child could have mild speech difficulties but be very obsessional

even within severe there is a wide range - it is defined as children who need a high level of support - but could include children with no speech through to children with delayed speech. In my area any child with a statement would be in the severe range. But that would encompass children in mainstream with support and those with autism + severe LD. Severe can be used to mean pretty much any child with classic autism. That is why they are trying to get more clarity in the criteria. Professionals can mean different things when they say severe.

We were told that DS was the most severe child the paed had ever seen and then in the same week the SEN officer told us he was too mild and clever to go to special school or even to require a statutory assessment. So often it depends what someone's agenda is what they decide to call a child

Some professionals try to help keep a child in specialist provision by talking up their difficulties.

ds1 I think is clearly severely autistic

you can see/hear him here

but when he was 2 we were told he 'definitely isn't ' autistic and that he had very mild language delay (aged 12 he's non-verbal).

I think they make it up as they go along tbh

He is very sociable though and friendly, and loves visiting new places and staying in hotels, so he's not very severe in that sense, but the amount of support he needs (24 hour and lifelong) means there's no doubt that he's severe iywim.

Thanks again to Agnes for the clarification. We did get the impression he was 'for' DS, but his initial classification was the shock factor. His following finding were positive eg he showed Ds a picture of an igloo and DS said it's a turtle:) and he said DS talked about different things-some were nonsense(no surprise)But our main positive was he actually co-operated with a stranger(yes it helped he was a man,his preference)as in the past he's been very against co-operating with unknown people.
As the day wears on and the kicks in all seems less upsetting

I describe DS2 as autistic with severe communication problems, he is non verbal and understanding is hard to measure but he is like saintly DS as he is very laid back, easy to please, loves being out. DS1 was dx as severe at 3 he is now 13 and unsupported at MS about to take some GCSE it is a minefield and for some dx can be fluid.

Saintly,thanks for your input too. I looked at your link(he's a star,a good looking star)and as you say, your Ds portrays what I perceive severe autism to be.Thank you for sharing you video with me.
It's a very bumpy road this ASD path and I'm so glad you lovely lot are here to help us on our way:o

Squidworth :)

My friend was told her son was too autistic to learn to potty train, talk or have any real idea of the world around him. He is now 11, talks for England (about his chosen subject mind) and is toilet trained. He is heading off to a secondary autism unit but has been in ms with statement since six.
According to dd2 CARS score she is classed as severely autistic was is a load of twaddle.

Had a look ....hes a lovely boy .......ive got to follow your lead.....get my son out and about build confidence and social skills ......