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When is an Autism diagnosis not enough?

Posted on: March 25, 2012

***Guest Blogger***

Todays guest post is written by Anita & you can follow her on Twitter @BennettAnita

In our case an early diagnosis was not enough because of where we live, so maybe I should have called it ‘the postcode lottery for education and support for children with autism’! Had we lived the other side of the border between the city and the county, or even in any of the neighbouring counties our lives could be very different by now!

Sean was diagnosed with autism at 2 & 1/2, brilliant you may think, an early diagnosis leads to early intervention, support before starting school, support from day one at school, a statement if needed, etc. Well in some parts of the country it does – a recent chat with a friend about a 3 year old living in the county next door, statemented before starting school, full time 1:1, choice of mainstream or specialist setting, etc led me to wonder if it was worth moving to our in laws for 6 months or so!! One special school I visited a few weeks ago had one 5 year old, the rest of the primary class were at least 8 – this is due to the highly inclusive policy of the LA we live in.

We missed out on portage after a reshuffle of teams meant our referral slipped through the net; the inclusion support who went into school refused to see him at home as we live in the city and his school is in the county (the border is 2 streets away and his school is as close as our catchment school!); MALT turned us down for help at home from CAMHS as he didn’t self harm; eventually after an emotional outburst at a portage-run course we were given emergency portage help – 6 sessions, then nothing again; an 18 month fight for respite; being told that at almost 4 he was ‘too young’ to be assessed for a statement; the list just goes on and on.

I am well aware that these are difficulties faced by many, many parents of autistic children, but I also know how much easier some parents find accessing this help, it just seems to depend on your postcode, and how much and how loud you shout! Most of the parents at Sean’s school think it is my choice for him to be there, but it isn’t. We are just a month away from the knowing the outcome of his statutory assessment and finding out if we do actually get to choose which school he goes to.

Anita

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1 Response to "When is an Autism diagnosis not enough?"

Anita you and your family have had it tough by the sounds of it! I agree it dies matter where you live and maybe it would be better to move fit s period of time to see if all changes. You shouldn’t have to do this but you have gotta do what you have to.
My daughter has just been diagnosed at 2 and a half and we ate waiting to be seen after Easter by the educational psychologist, this is in order to see if they will statement her now Or already get some help via CAMHS but I am not sure how this will pan out.
I believe early intervention is paramount for those lucky enough to get an early diagnosis.

I sincerely hope you get the help you all need and please do keep us all posted as I would live to know how you get on. All the best.

Freyja

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