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Potential autism diagnosis - help

(4 Posts)
Ditto22 Fri 14-Feb-20 22:53:55

My DD is 20 months old. Today we had an appointment with a paediatric nurse (following a referral from HV) as I raised concerns my DD barely speaks, doesn't point and has limited eye contact. Nurse agreed from observation that there are red flags for autism and has referred us to a specialist for assessment, but the waiting time is 6 months, just for this assessment. I know there is a limited window to make a real difference in my DD's future with early intervention if autism is diagnosed and I'm terrified we are losing that opportunity with such a long waiting time. Can anyone with experience give some advice please?

(1) is it worth getting a private diagnosis - could we use that in NHS to get appointments for therapy? Or would we need a NHS diagnosis and so the waiting list is unavoidable? How much would a private assessment cost, roughly?

(2) Following a diagnosis, what interventions are available on NHS? Is there much support/ therapy etc? We live in Scotland but keen to know of any UK experiences.

(3) What can I do at home to help my DD learn to communicate?

Any advice anyone can give would be great.

OP’s posts: |
JiltedJohnsJulie Sat 15-Feb-20 05:36:34

I'm sorry OP that I can't answer your questions. If you ask MNHQ to move your thread over to the SN section, you might get some answers thanks

AladdinMum Mon 17-Feb-20 12:33:03

It is unlikely for a child to be diagnosed with autism below the age of 3YR old though the NHS (mainly due to long waiting lists) though a diagnosis is not required to access any of the support available - however the support available though the NHS is very limited and you will likely be disappointed by what is available. The only widespread therapy available is speech therapy through SALT, you might be offered one hour a week in group sessions (rarely will it be 1-to-1). The main support comes though the school/nursery system where if your child struggles they can apply for extra funding to have a dedicated support person to help them in the classroom. A specialist school might offer better support.

A private diagnosis costs around £1000 (depending on the method used, for example ADOS is around £750 + VAT in many private clinics), but unfortunately unlike in the USA here in the UK there is no early intervention and hence the intense therapies which you might have read about like ABA, OT, ST, etc (which the child is exposed to every day from an early age) and not available through the NHS and would be prohibitively expensive to do privately.

You might want to have a look at the SN board, there is a lot of good information there from people that have gone through this process already.

Mummy0ftwo12 Mon 17-Feb-20 14:35:14

As AladdinsMum said a fully fledged ABA therapy program wouldn't be funded at this age and would be very expensive, however there are cheaper alternatives you could investigate, in fact Blue Sky Autism is a charity in Scotland that does early PRT intervention for children with autism which is similar to ABA and even just reading the book 'an early start for your child with autism' or similar books might give you an idea about what you can do at home to encourage interaction.

You could see a specialist speech therapist privately possibly fortnightly or monthly to help with communication as well which was what we did, we also tried PRT but it was the speech therapy with daily practise that helped.

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