Published on 12, July, 2020
I’m very desperate now.
I have been dealing with the challenging behaviour of my 33 month old now for over 12 months. I asked health visitor for help twice but was told to wait until he was 3yrs. 3 months after me raising concerns his behaviour becomes so very challenging that his nursery raises concerns too as he is harming staff as well as other children.
Health visitor finally comes to see his behaviour for herself and makes a referral. (Speech and language, hearing tests and educational doctor) I have waited 3 months now and heard nothing from the nhs.
Can I ask how long did you wait for a first appointment?
My son has recently started going to bed late and waking through the night (gone from 12 hours sleep to 6 hours sleep) which is making his behaviour all the more difficult.
i guess it’s maybe a postcode lottery?
I'm so sorry to hear what you're going through! Also very shocked that the Health visitor hasn't put a referral through sooner! I would have thought that if there were significant concerns then they should have done something a lot sooner!
I think how long you wait for an appointment will depend on a number of factors including but not limited to the demand on services in your area and the presence or not of other developmental delays.
We waited 4 1/2 months for my youngest daughters Autism assessments to start, from when her Paediatrician referred her. She had her first Assessment yesterday.
Would it be worth telephoning the various departments to ask where he is on the waiting list and how long he will have to wait to be seen? At least if you have an idea of the time frame it might help?
Also, maybe phone the helpline on this website to see if they can give you any advice for managing behaviour?
https://www.autism.org.uk/get-involved/about-us/contact-us.aspx
Thank you so much, yes I called the helpline yesterday and they gave me some great advice. Especially in keeping a behaviour diary to help reveal his triggers which I can now identify a few things that I didn’t realise.
i think because he can speak (all Be it a little behind) and at his 2 1/2 year assessment he was running around flying an airplane she just said he was strong willed and to wait another 6 months.... it was only after she realised his behaviour was the same with and without me and the fact he doesn’t understand tone of voice and facial expression and the persistent challenge behaviour that she made the referral after seeing it for herself without me present.
I hope all went well at your appointment for your little one.... Do you know how many appointments you have before they make diagnosis or do they just have a few appointments and gather reports from medical, parents and nursery over a long period of time?
It's really good that you got good advice from the helpline.
Litlun's Home assessment on Tuesday went well Thank You. When I dropped her off at Nursery on Wednesday morning, they said she was having her Nursery assessment on Wednesday. They'll write to us with an appointment for the ADOS then she'll need a Multi Disciplinary Team assessment. Hopefully we won't have to wait too long. They would also have all of her medical reports, she's high needs and has already had intervention from a number of healthcare professionals already.