Getting frustrated at the long wait for autism assessment

[elliejjtiny]

Ds2 is 15 years old and has had a very long wait, 10+ years, to finally get on the autism assessment pathway. School recommended I chase up the referral at the annual SEN review yesterday so I did that and he isn't going to be seen until July next year.

I'm so frustrated with it all and I'm also worried that there won't be any support when he gets the diagnosis as Camhs discharged him 3 years ago because he couldn't engage with them and the autism outreach team (who have finally given my youngest an appointment 3 years after his diagnosis, but that's another story) only sees children under 13 years old.

Ds2 attempted suicide 3 years ago and I'm scared he will do it again. He rarely speaks and then he only says the minimum he can so I have no idea what he is thinking. He has meltdowns when he gets overwhelmed but he can't tell anyone what was wrong.

He messaged some of his friends saying that he wouldn't be seeing them again and they all panicked and one contacted me saying she thought he was going to attempt suicide. He said it was a typo and he meant to say that he wouldn't see them until after the weekend but I'm not so sure. I feel very much on my own in all this.

The majority of support is based on needs rather than diagnosis. So, a diagnosis is unlikely to automatically result in more support, unfortunately.

DS needs re-referring to CAMHS. If he couldn’t engage with what they were offering, they need to amend what they were providing DS, not just discharge him. Did you complain?

I’m not sure whether by the annual SEN review you mean an EHCP annual review or an internal school level SEN support review. If DS doesn’t have an EHCP, you should request an EHCNA. If he does already have an EHCP and it was an AR, if the EHCP isn’t amended to better meet DS’s needs, you should appeal. The benefit of an EHCP is it can give support, including therapies, DC wouldn’t otherwise receive, for longer, more frequently and without the need to sit on the waiting list.

Thankyou. What kind of support could CAMHS give to DS? The man who we saw talked to DS about his favourite subjects (sports teams, the game he was playing on the playstation etc) which ds2 was happy to talk about, but then as soon as he tried to talk about emotions or why he had taken an overdose then Ds2 couldn't talk and just sat there crying so the man from camhs said he was obviously making ds2 worse so he was going to discharge him as there was nothing else he could do. I didn't complain, although I've wondered since then whether I should have.

The Annual review was an internal school thing that they do every year to review his needs and targets. He hasn't got an ehcp. I've asked the school several times but was told he doesn't meet the criteria.

Request an EHCNA yourself. Some schools often say DC don’t need or won’t get an EHCP, but their parents go on to successfully apply themselves. An EHCP is key to unlocking support not otherwise available e.g. if DS likes animals animal assisted therapy, if DS enjoys gaming Mindjam.

CAMHS could have explored support that relied less on verbal communication and discussing emotions. They could also have looked at OT with the aim of improving emotional regulation and teaching better coping strategies. They could have referred to psychiatrist to consider (closely supervised) medication. There are numerous things they could have tried. Discharging DS because he couldn’t engage is the easy way out for them.