high functioning autism toddler how long did you wait?

Hi, My daughet is 5 years old and we waited 2 1/2 years for our first appointment and even now we are still waiting for her to have an assessment at her school. They don't tell you how far you are on the list before getting an appointment so the waiting feels forever. I have the same issue with my daughter some nights she will sleep all night that's from 9pm till 6am but almost every other night she will not go to bed unless I lay with her and when she eventually falls asleep she will wake up 2-3 times a night and get into bed with me and her dad, I often end up going to her bed instead. Then during the day her mood is all over the place as she has had a bad nights sleep. I have tried lullabies, sleep bears and malt drinks I am going to try some lavender spray and see if that helps.

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.

I'm really glad that you have more of an idea about how long you will be waiting for the appointment. Do you feel a bit better for knowing? Will your HV offer any extra support now that she knows you are struggling?

my hv called on my behalf when she realised that I was really struggling now. She said referral goes through a vetting process first then appointment allocated within 12 weeks. She told me that the vetting process was passed and appointment allocated within 6 weeks. She also said you can put your name down to be on standby for a cancellation appointment at short notice (same or next day) 

Years, I was alone without support as I dont have family etc. I really struggled. Finally diagnosed aged 7 even though ed psych etc said deffinatly asd since nursery. Ehcp only just issued age 11! We have to fight for everything here

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?

Thank you for your reply, yes nursery has already been asked by health visitor to keep a diary of his behaviour. The referral has been accepted and I’m told he will have an appointment in 6 weeks after the summer holidays. (Not sure if that was speeded up because of me hassling them or if that was my allocated slot anyway) she tells be that he will get speech and language therapy regardless of diagnosis and possibly OT depending on diagnosis. I have found online forums very useful thank you for suggestions. There is a charity in my area who run parents classes and sensory sessions.

Your local Hospital should have a main number which is basically a switch board, they should be able to provide you with the numbers for different departments, including those not located in the Hospital as they are all part of the same Healthcare Trust.

Oh my gosh you must be exhausted and frustrated. 

I do hope that you get the support your family deserves very soon! That’s so sad to hear your little one has had to go through this.  My boy at 2 1/2 sounds like your daughter at same age. It’s only recently that his behaviour has been extreme and I’m worried for the future. Please don’t give up on the process. I have spent the morning shouting at my GP surgery about breach of duty of care and failure to adhere to certain elements on the un conversation on the rights of a child. - not like me to be acting like this - I’m blaming sleep deprivation) but after all that distress this morning I’m now told that his referral has been accepted and that he will have his first assessment in 6 weeks and I also managed to get a space on a local charity’s “managing challenging behaviour” have you tried any local charities for help?

Hi Kitsun. Thanks for the useful advice. How do you actually find out the telephone number of the various departments to query on the waiting list? I really want to do that but I have no idea where to start?

Thank you for your reply. I’m just looking for the support services to start and not the actual diagnosis. I’m looking for intervention ASAP to help manage the behaviour while he’s so young as I fear it will be far harder to help him once he gets older. He is not an only child but he is my youngest. I had an idea something was not quite right but felt blessed to have a very quiet happy baby. violence the hardest for me to accept and hoping for some sort of miracle that he will Learn to stop this. How do you find your little ones behaviour? My son started pulling hair around age 2 (for no reason) this progressed to scratching and pushing. 

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

It’s impossible to say how long before you get official diagnosis as it depends not only on the child but also on where you live. My advice would be to ask nursery’s family worker for a referral as well as your own that might speed things up. Also don’t wait for official diagnosis as it’s nothing more than bit of paper. You don’t usually get any support from doctors. All we got was after diagnosis was a leaflet and a book for a child. That’s is it. No further appointments, no support nothing. Not worth waiting for! Just focus on educating yourself about autism, how to help yourself and how to best support your child. There’s huge amounts of information and advice on line. There are family groups on Facebook if you use it. There might be support group in your area. Please feel free to join any of them before official diagnosis. You will be welcomed and supported. 

Hi, 

It really is a postcode lottery. I first raised concerns about my daughter when she was two and half. She was only sleeping 5 hours a night and not all at once, she was showing repetitive behaviour poor eye contact and slow speech. On top of that major sensory issues and restricted diet, I was told she will grow out of it. Took her to doctor at 4 as still struggling although speech caught up, doctors laughed at me but grudgingly referred to paediatrics, they wanted her assessed but had no access to service as at different hospital, so gp was asked to refer her told it was 2 year wait so we waited only to find out gp hadn't bothered with referral, school nurse got involved and after a year collecting evidence sent referral to child development centre, they rejected her on the basis she has a friend and on the wording of referral letters! Built new case for referral but were then told as she is 8 she needs to go to camhs, sent referral to camhs they said no as cdc are responsible until 11 for asd assessment, took it back to cdc who have this time accepted the referral but now we have months to wait before she is allocated a doctor. 

In short after 6 years she has still not been assessed. 

We have pretty much lost all faith in the process, and have explained autism to our daughter in a positive way allowing her to read about it listen to autistic people and she has come to the conclusion that she is probably autistic! .

Gosh I'm so sorry to hear. Our son is 2. I'm worried he will do the same. We have been told a 22 month waiting list for diagnosis. Surely there must be a better way. I heard some private places don't get accepted.