Right to Choose - ICB pausing child autism assessments?

[PandyMoanyMum]

Has anyone else had this happen? My GP agreed to refer my child on the RTC pathway for an autism and adhd assessment. They are 17 and have just about managed through school with additional support but are hoping to go to University so we wanted a formal diagnosis to access DSA for a mentor and other reasonable adjustments. I’ve had a message from the Gp surgery saying the provider will do the adhd but not the autism for “contractural” reasons. I’ve done some googling and all I can find is a Facebook post saying that the ICB have paused funding on RTC referrals. Has anyone else had this? I’m quite stressed as once my child is 18 they have to go on the adult pathway and that takes even longer. I don’t want them to go to university without the right support, but they can’t put their life on hold either. Help!

The adult RTC pathway is quicker than the child one for autism assessments.

Can you ask your GP to refer to another provider for the autism assessment?

One question I’m wondering is, why are you only looking at an assessment when your child is almost 18? Why did you, or your DD/S’s school not refer her/him for an assessment earlier?

There is always a helpful poster somewhere! 🙄

Ha! Because back when he was 4, 6 and 8 and these issues came up at school and liaised with CAHMS we were told to manage him as if he were already diagnosed. There was no need for involvement as he wasn’t depressed or anxious. And yes I am bloody kicking myself for being a good little parent and doing all my own research into how to cope.

My child had ADHD but school didn’t support the diagnosis process because his ADHD doesn’t manifest in problems with teachers, his peers or academics. He’s also a late August born during a time when you couldn’t defer so had the “immature” label by teachers. If his ADHD had manifested in other ways like kicking off and hurting people then I’m in no doubt that school would have been more helpful.

In my son’s case he had more pressing physical issues that took up a lot of his childhood. The slow pace of NHS help meant that he was diagnosed as a teen and school was 🤔 about the report.

@FuzzyWolf ah ok - I’d been told it was worse for adults but I will look. His birthday is end of August so will be 18 right before he would go to University. I’m not against the idea of a gap year but he struggles without routine so it would have to be very well thought out.

In that case he’s been let down badly by both his primary and secondary school and CAMHs. As a SENCO, if a parent had concerns about their child that we didn’t necessarily see in school, I would always put a referral in for screening and if needed a formal assessment. I’m not trained to determine if a child has an ND need - although I am able to note the most obvious signs and look at ways to support those needs. I wasn’t being flippant - sadly there are far too many adults who have struggled throughout life who are only now receiving a diagnosis.
As you’ve already been advised, as an adult he is likely to be assessed sooner rather than later - my SIL has just been diagnosed after being on a 6 week waiting list.

@Snorlaxo my DS is not violent (to others) either and actually loves following rules once they were explained. School were great at supporting, but the wheels have fallen off at college and the overwhelm and OCD is getting harder to manage. He’s had periods of feeling suicidal during the school holidays when the routine changes and I have had to take parental leave. He will need extra support to make the transition to University safely.

I’m guessing it’s cost. I work in a GP surgery & my job involves processing referrals. RTC referrals for ASD have increased so much lately, understandably so, but somebody has to pay these private providers. The cost must be huge.

I’m not saying it’s right, just that this is probably the reason.

@Soontobe60 funnily enough, pre school and primary school instigated the referrals to an Ed Psych (was seen twice) and MAB(Multi Agency Behaviour Service) and encouraged us to ask for referral but it was CAHMS who pushed back every time. I do feel let down to be honest. I am somewhat encouraged that the adult ASD RTC route is not too long. I am wondering if there will need to be observations in two settings like for kids. Might be tricky if he is out of education post-a levels but not employed.

I also work in a GP surgery with referrals and echo the above. I've heard talk about ICBs in certain areas withdrawing funding but not had anything confirmed yet. There's also been talking about how to streamline and improve the process so there's definitely things happening behind the scenes - but the information is coming out in bits and pieces. If it's the provider who won't accept the referral, and not that your GP can't send them then I'd pick another company for the ASD assessment.

@ProfessionalTeaDrinker yes I have seen that NHS England were going to insist on a cap on RTC referrals …but then after consultation they decided not to. So I think it is the individual ICB making its own rules. I’m trying to get to the bottom of where the block is but I know the GP sent the referral because I received acknowledgement from the provider a couple of weeks ago. I got a gp text today saying the provider has been. In touch and will take the adhd referral but not the autism one due to “existing contracts”.

It might be worth trying someone else then as the wording implies its a provider issue. It's such a minefield at the moment, not helped by every area having different availability and different rules, all of which seem to be changing all the time! I hope you manage to get somewhere asap for him

I would go ahead with ADHD assessment now and consider autism adult assessment later if needed - if the ADHD assessment service is good, they will be able to pick up on autism too and put in recommendations for support or suggestions for further assessment. Also, this means you can contact disability services at the uni of choice before DS starts to say assessment's under way, and start planning transition - supports should be on the basis of need, not diagnosis.