6 days until 2nd paed appt and want to push for full assessment (ASD) - any advice for making this happen?

[skidd]

Well the title says it all really. DS1 is 4.2, saw a paed a year ago who advised waiting 6 months as a full assessment would take up a lot of her time (), so of course 6 months turned into a year and we have the appt next Wednesday.

I think it is probably AS/HFA, as does a friend of mine who does autism research. I want to insist on a full assessment as soon as possible to try and get some support for when he starts school in September (he HATES pre-school which is part of the school he will go to) - I will be as pushy and obnoxious as it takes but can't bear to be palmed off again - any advice on what to say/do to get an assessment asap?

Thank you

Are they planning on doing an ADOS assessment next Wednesday?.

You can apply for a Statement of special needs from your LEA and you do not need anyone's permission to do so nor a firm diagnosis. A statement unlike anything else offered is legally binding and it needs to be adhered to by school.
However, these documents can take around six months plus to set up so time is of the essense here.

www.ipsea.org.uk is a useful website re the whole statementing process and there are model letters on there you can use.

I requested an assessment from a Developmental Paediatrician, which took a couple of hours and was very thorough. Depending on the child's age, however, they are not keen to diagnose ASD too early, I feel, because they want to see if the child develops at their own pace. After 2 years of speech therapy following a diagnosis of 'speech delay', followed by 'developmental delay', I had already diagnosed himself and was not shocked when the final diagnosis of ASD came. This diagnosis was essential as part of compiling a Statement of special needs for attending primary school.

Attilla - I don't know what they're planning - I guess it is basically a follow-up appointment so I doubt they'll do the ADOS there and then - I am hoping they will agree to an assessment and it will be arranged for the near future - I am probably being very naive!

Thanks for the link - I really don't think he would get a statement as school aren't worried about him and he is very passive and doesn't cause trouble. Will have a look though.

Soph - how long was it between requestiong the assessment and getting it?

DS was dx at 3 but it was obvious before 2 that he had problems. I found it very helpful to take along a list of all his quirks, traits etc. I started the list and kept adding things to it as they happened or I remembered. It helps to paint a picture of your child - my paed asked to copy the list and put it on file. (at thet point I wished I had written it up properly rather than scribbled it down for my own use- lol)
We had a nine month wait for the ADOS but had a working diagnosis. We actually had a statement for ds before the diagnosis was confirmed and he started special school when he was 3.

Hi cwtch, yes I have an extensive (and ever-increasing) document with all his quirks etc on - in fact when I took it to the 1st appt a year ago, the paed took one look at it and asked me what kind of psychologist I was as I had divided it into sections like gross motor skills, sensory processing etc - she said most parents come in with concerns like, he's a fussy eater and he doesn't play much with other children, and my list was all about auditory processing and language precursors

Wow 9 months is a long time to wait for an ADOS but I would be happy (well if happy is the right word) with a working diagnosis - I just want to understand him better, for his siblings to understand him better and for the school to understand him better and I think a diagnosis would help with this. I have another thread about how to explain his difficulties to his big sister when he doesn't have a diagnosis - if we knew he did have an ASC then this would be a lot easier I think

"I really don't think he would get a statement as school aren't worried about him and he is very passive and doesn't cause trouble. Will have a look though".

In my experience children with additional needs who are both calm and passive get missed in a classroom and do not ever have their needs fully met so are failed as a result. Schools and teachers are generally not trained enough to recognise special needs at all.

Do have a look at the website given

Good luck to you and your DS, keep us posted.

thanks Attila - I'm sure you are right about passive/quiet children not having their needs met - how depressing

Will keep you posted, thanks for the advice