No ASD diagnosis over the age of 5yo...

[Girliefriendlikescake]

That's what I was told today, they won't assess any child over the age of 5yo. I'm in Somerset and found that quite shocking.

My 13yo dd was privately assessed and found that it was highly probable she has high functioning ASD but now we won't be able to get a formal diagnosis.

Not sure what to do next for her 🙁

Complain to your CCG quoting NICE guidelines.

they won't assess any child over the age of 5yo
That's appalling, can you absolutely verify that, it would be a real shame if it's been said by someone who has got the wrong end of the stick.
IF it is true for every child in the county, I'd take Hawksmoth's suggestion to my MP and ask them to clarify.

IF your only way to get a full diagnosis is to go privately, the NAS website has a list of practitioners throughout the country, link below. Some of the NAS search results tend to only promote the Lorna Wing Centre who are famous for their work in diagnostics for girls and women.
Your GP should also have a list of professionals who can diagnose privately, again ensure that they are up to speed with diagnosing the female presentations of autism as girls and women present much differently to boys and men.

When you're stating your case, you may find it more helpful not to refer to the tests your daughter has already had as an assessment, because an assessment for autism definitely confirms or denies autism, it doesn't just suggest autism as a possibility. I'm guessing that what she had was age-appropriate specific screening test(s). Lorna Wing centre calls them "Pre-diagnostic consultations" www.autism.org.uk/services/diagnosis/diagnostic.aspx

NAS diagnostic services list www.autism.org.uk/directory/browse/cid=80~aid=1.aspx

I'm in Somerset too and I have been told this too. Somerset parent carer forum are trying to help parents and also trying to get it changed.

That's atrocious. But it looks good for their stats, if they limit referrals then they can say they've reached their targets of getting people assessed within a certain period.

Remember this when you vote, if there's any NHS to vote for by then.

That’s bonkers. So many children don’t exhibit obvious difficulty until formal schooling with its social expectations, or it isn’t picked up on until observed by teachers. Lots of students with ASD also manage to cope until secondary school where it is less structured and more socially complex.

This is horrifying. If you have it in writing can you send it to your MP?

Thank you for the replies, I was told if I have concerns about my dd I could go through camhs but I don't think they would see her as she hasn't got a mental health condition (yet) 😕

Unless they mean they'll only refer once someone with undiagnosed ASD reaches a mental health crisis?! Surely the point of diagnosis would be to get the support in before that happens!

Am feeling a bit lost now, dds OT, SLT and SENCO all confirmed no referrals over the age of 5yo.

How do I complain to the CCG?

Wow, Ds is on the diagnosis pathway and he is 15. We live in a county bordering Somerset. From what I have heard in our nhs trust though he will have to agree with the diagnosis or they will refuse to give it. I know someone who went last week for their final consultation and the consultant refused a diagnosis because the teenager didn't agree. Ds was told at his assessment this week that he will be part of any diagnosis given. We have started to talk to Ds about ASD, he certainly seems to be meeting all the criteria but is not keen to engage, we feel he needs this diagnosis and I hope they listen to us as well as him. I asked if I could briefly chat to the speech therapist alone at the assessment (Ds had given his consent) but she refused.

At least Ds had an appointment though, not seeing any child over 5 is awful. If I were you and can afford it I would go down the full private assessment route. You must be so frustrated.

From what I have heard in our nhs trust though he will have to agree with the diagnosis or they will refuse to give it. I know someone who went last week for their final consultation and the consultant refused a diagnosis because the teenager didn't agree. Ds was told at his assessment this week that he will be part of any diagnosis given

That's bizarre, would they do the same with diabetes? Imagine a doctor saying 'You are diabetic but if you aren't on board with that we won't give you the diagnosis.'
Many teens will struggle with feeling different and desperately want to fit in, how many really, when they've not encountered what autism really is and don't understand how a dx could help, would be on board with a dx at a point in their life when they are desperate to be the same as everyone else?

A dx is the person's own private medical information to be divulged when they think reasonable adjustments can be made, but someone in the grip of teen hormones isn't likely to appreciate that, are they?

There's a thread in AIBU about parents deliberately not wanting a dx, despite believing their dc have autism. Lots of talk about labels.
www.mumsnet.com/Talk/am_i_being_unreasonable/a3629648-to-avoid-getting-my-son-diagnosed?msgid=88313195

I agree BlankTimes, Ds is a mess of hormones and teenage stuff and that's before you even get to his difficulties with possible ASD.

It has been a worrying and difficult year and Ds's anxiety especially at school is at an all time high. I am dreading sitting at his appointment and them leaving the decision on diagnosis down to an hormonal teenager. Ds does not have the understanding at the moment about the support he may need in the future. They have told him to research ASD though so I hope they wouldn't say that to a teen who they weren't going to diagnosis.

Not sure why they don't have a national initiative for ASD diagnosis so it was the same all over the country. In our area there are two routes to diagnosis, paediatrics and camhs and they both use different diagnostic tools. It really is shocking some of the barriers and waiting times that parents face around the country, I would never have believed how bad it is until we started this journey with Ds.

In some areas Community paediatricians are only commissioned to see children under 5, and CAMHS are used to diagnose over that age. So there should be a pathway for your child.

Can I ask, are your NHS children's services under contract to Virgincare?