Wait time for ASD assessment extended

[beautifulbrothers]

My DS was referred by his school's SENDCo to the local Child Development Centre in April 2023 (Reception).

He saw a paediatrician at the local Child Development Centre in December 2023 (Year 1) who referred him to SALT and Ed Psych for an ASD assessment. They advised a 3-month waiting period, so I contacted them after 3 months (March 2023) and was told that the local ASD pathway for initial assessment was 9 months.

I contacted the CDC again today (9 months after initial paediatric appointment and DS now in Year 2). The CDC have his next appointment pencilled in for November but are waiting for the assessment to take place, so advised to contact SALT and Ed Psych directly to check where DS is on the list:

• SALT is on long-term sick leave - someone else in the department will get back to me.

• Ed Psych has emailed to say that they received the referral in January 2024 and the waiting list is 14 months! They apologise for the delay.

So we were all expecting an assessment any day and now have to wait until (at least) March 2025. DS will be heading into his last term of Year 2... 2 years after the initial referral was made by the school to the CDC.

Can I do anything? Or do I just have to sit on my hands and wait? 😭

You could complain about initially being misled about the timescales. Unfortunately, the timescales aren’t unusual.

I'm afraid a bit of a shift to the right is not unusual.

Your other option is to go private. I don't know how easy this is with a younger child.

I also have a child awaiting ASD assessment and there is no way to speak to them to get any dates at all. Literally all the info they will give is that they have received the referral. She will turn 18 soon, she's got A levels, uni applications, and I've no idea if they will just cross her off their list on her birthday. I cannot get anyone to speak to me, they just have an answerphone that they don't reply to .By giving us zero info they are basically pushing everyone who can possibly scrape the money together into going private. Which suits them down to the ground.

I'm so frustrated. We anticipated a long wait, but they raised our expectations. The school are brilliant and are providing him with lots of support, but he is reaching an age where he is starting to notice his differences and we really want to have a conversation with him where we can share a confirmed diagnosis. I'm worried now that I'll contact them next year and it will be an even longer wait. 😓

I'm so sorry that the communication is so poor for your daughter. I can't make sense of the NICE guidelines. It looks like every child referred is supposed to have a key worker (or something similar). It makes you wonder whether there are any service providers that adhere to best practice at all. What a mess.

Autism Case Coordinator. Does anyone know who the 'autism team' is? I'm assuming these are the paediatrician, SALT and Ed Psych but it all seems so disjointed where we are.

I think I'm going to contact the CDC again and ask about the attached guidelines.

Who the autism team varies area to area. It is the team who assess for autism. The autism team doesn’t have to include a paed. It could include a child and adolescent psychiatrist. It doesn’t have to be an EP either. It could be a clinical psychologist.

The case coordinator isn’t what you are thinking of. It can be the person who sends out letters, passes on messages, responds to messages.