Potential autism diagnosis - help

[Ditto22]

My 20 month old DD saw a paediatric nurse today after being referred by my HV after I raised concerns about my her not pointing or waving, not using words to communicate (although does say some words but not in context) and having very poor eye contact and interest in interaction. The nurse said her own observation of DS raised red flags for autism and we have been referred to a specialist for assessment. There is a 6 month waiting list for assessment and then further waiting lists for any therapy if she is diagnosed. I've read about there being a window of opportunity until around age 2 where intervention can make a huge difference to a child's life with autism and am so worried that we are missing this waiting on a list. Can anyone please help with some questions?

1. is it worth getting a private assessment? Would the NHS accept any diagnosis from this to put DD forward for therapies/ interventions or would I need an NHS diagnosis before they would add her to a waiting list? How much is a private assessment?

2. What help is available on NHS in event of an autism diagnosis? Are any non NHS treatments generally affordable for ordinary people or is it super expensive?

3. what strategies can I use at home to encourage DD to communicate and engage with us. I'm always on the floor playing with her/ reading stories but she is still very happy alone, rarely shows me anything, doesn't look where I'm pointing. She essentially just cries to communicate her needs and that is about it.

Any advice gratefully received.

Intensive interaction is probably your best approach from a play perspective. You can read about that online or YouTube has many videos. It is also called Floor Time. It’s the play that you’re already doing with her but more structured and purposeful.

Do you use any visual supports with her? This might be a good area to start if she is non-verbal.

The Hanen book More than words is an excellent guide to all types of communication.

An early start for you child with autism is based on the Denver model and is about using every day activities to engage your child.

How to raise a happy autistic child is a good book for parents beginning their autism journey and there are many others, of course.

Regarding what you might be offered, it’s so hard to say as it differs by area unfortunately. You may get access to play groups run by specialist teachers, you will most likely go on a waiting list for an Early Bird type course. You may get speech and language therapy and occupational therapy. What will make the most difference though is what you do yourselves with your dd so my advice would be to do a lot of reading and start using the strategies and techniques at home.

And I always forget this because we were never offered it. Find out if your area offers portage. Lots of people find it really useful.

Hi Ditto, I haven't got much to add except Early Intervention is the most important thing you can do now. If you have to (and can afford to) go privately, do it. Get SLT, OT etc. started. Make sure you have her hearing tested to ensure there's no problems there. Have a think about her diet and if there's any possible intolerances etc..

Good luck. If you need any support, DM me. It's a hard old road but not without hope 🥰

Also, look up "Nurturing Neurodiversity" on YouTube. She has a bunch of useful videos for this "limbo stage" (which is hideous: it will get better!!) - including a couple on things you can do with your child while you are waiting for Dx.

We had portage from aged 3 and it was most definitely helpful for my two boys - one diagnosed at that point and the other awaiting assessment which was pushed along promptly. Whenever anyone asks what the one best thing in terms of support that help me and my boys I've always said portage! They were amazing, gave me lots of god ideas around play and coping strategies which helped immensely. Both NHS diagnosed and not much of a wait to be fair.

stoptherideiwanttogetoff would OP ask her health visitor about portage or is there a different route?