Dd being let down by CAMHs re autism assessment, what support is she entitled to?

[W00dland5]

My dd has a history of low mood, self harming, suicide notes and now Anorexia which has landed her in hospital. ED team giving her loads of support but ED is proving difficult to budge. She has a dyspraxia and sensory diagnosis. We filled out the autism screening forms and it was deemed that there was enough evidence to proceed with the diagnosis screening. Only thing is she is 16 and very negative towards it.CAMHs individual therapist basically saying it’s up to her, look at these websites.Off you trot.Dd masks and struggles to show emotions. She wants to fit in and doesn’t want to be seen to be different.

I’m staggered. Surely it’s in everybody’s interest to get to the cause of all the above so we can support our dd to understand how her brain works. Surely the cause is the most important issue. The vicious circle of masking, shit hitting the fan when girls hit teenage years and the bigger likelihood of not wanting a diagnosis, not having support to engage with screening must surely be adding to the numbers of girls going undiagnosed.

Is there nothing we can do. Should dd be getting some support to proceed with this? She must be entitled to something. I can’t help thinking if she was a boy with more obvious traits the support would be there.

CAHMS are appalling in our area. I feel they totally failed DS. I don’t think it’s a boy/girl issue, more a lack of funding/too many kids/crap staff issue.
DS has had no support from day one age 6, now nearly 18 so due to be discharged, but even an emergency re referral from the GP concerned re state of mind & harm got us nowhere. Appalling service and I’m so worried for his future

Unfortunately, at 16, if DD doesn't want to be assessed then she won't be. That would be the same regardless of sex, and regardless of whether ASD assessments in your area are undertaken by CAMHS, a neurodevelopmental community paed or whether you went private.

I have a 16 year old autistic Ds, who was diagnosed just over a year ago and there was absolutely zero support available to him, before or after his diagnosis. The support is just appalling for every young person, regardless of their sex.

I think maybe give her time and let her process it a bit more and she might come round. Ds also hates to look different but was severely bullied at his previous school because of his differences. But like 10green says, at 16 they will need her consent to proceed.

Ds is now on the Camhs caseload due to MH difficulties and I was initially hopeful and thought that they would be able to help. His community nurse has described him as very complex and said the interventions aren't working. I get the impression that they are struggling with supporting him because he is not NT. Camhs does not seem to be set up at all, to help those young people with mental health difficulties that are also neurodiverse.

But that’s so young for such an important decision to be made without support. It’s nuts. Teens can be very neg re differences etc. Girls like to fit in. Surely if they feel the evidence is there the child be supported to do something in their best interest.

Basically CAMHs are saying evidence is there for screening. Her mental health is clearly very worrying( hospital admissions) but they’ll do zilch to help her do something that could really help.

As Punx posted, a diagnosis doesn't mean support will materialise. Unless there is an ASD specialist service involved (unlikely) then CAMHS support should be needs based, not diagnosis based, so a diagnosis shouldn't make too much difference to the support DD receives from them. My DS without ASD receives more CAMHS support than his brother with ASD.

What a diagnosis could do is improve others understanding of DD, DD may benefit from having an explanation/understanding of herself, provide access to sparse ASD services, ASD specialist provision. But no one is going to assess a 16 year old (or even a younger teen) of either sex if they don't want to be assessed.

Punx the current CAMHS team need to refer DS on if they can't help. You may have to push them. Does DS' EHCP contain MH support?

I don’t want support for after a diagnosis but support for her now to go through with a diagnosis so she can better understand herself and thus make the likelihood of mental health problems further down the line less likely. It might also help us not lurch from one mental health crisis to another now.

She is getting support for the current mental health issues as they can cause physical risk but not giving support to find out the cause of them seems like false economy. They will continue.The kids who can’t handle a diagnosis get left, those that can get the benefits a diagnosis can bring. If they feel a child of any age presents enough evidence to go through a diagnosis surely it should be facilitated whatever the age or child.Any other condition would.

Any other condition would.

^^That isn't the case.

By 16 most DC, even with ASD, are legally deemed capable of making such decisions. If you don't feel that is the case then speak to CAMHS, If they agree it will change matters, but that would be unusual.

It is the same with all conditions, not just ASD, and with DC younger than 16. A friend's 14y/o DS with ADHD is suspected to have an IBD but doesn't want the tests/procedures to confirm it. Despite being quite ill, no one can force him because he has capacity to make that decision himself, even if it is considered unwise.

But girls are more likely to be overlooked re autism and need a later diagnosis which being teens are more likely to turn down.

It’s a vicious circle.

They are being massively let down. Counselling if a diagnosis is deemed necessary and refused should be made available particularly if they were overlooked for years.It’s not their fault the whole diagnosis system is geared towards boys and autism in girls tends to get hidden more.Many EDs occur in girls with autism and are harder to treat. EDs can be deadly.

It just seems nuts. A few sessions of positive autism counselling could make such a difference.

Counselling shouldn't be reliant on a diagnosis.

Anything more than providing a 16 year old with all the information so they can make an informed decision is unwise. The young person may only make the decision you want to please you, a common occurrence with females with ASD, which can have just as disastrous consequences as no diagnosis.

I'm well aware of EDs, I have 2 DC with a common ED, and high functioning females are often diagnosed later, I have a young adult DD who has ASD, but this isn't an issue of sex (there are many teen boys, such as Punx's, who refuse an assessment or reject ASD - you only have to look at the SN boards to see it) or solely confined to ASD.

Re counselling not for persuasion but to provide a more positive picture of autism, make it less scary and to put forward the benefits of being fully informed with a diagnosis.. Leaving children in limbo with years of mental health and little info as to why is pretty shit and helps nobody.

W00 it is terribly frustrating and sounds like a really difficult time for you 💐. Ds's diagnosis has not lead to better mental health for him at all, it's just an explanation but nothing really changed when we got the piece of paper that said he had ASD.

In actual fact quite often mental health services refuse to see autistic people as they say it's autism not mental health causing the issues. Ds's first CAMHS referral was rejected because he was autistic. I've yet to find anywhere within the NHS that will provide positive support alongside a diagnosis. They are reactive not proactive. Only when your child falls apart, will they do a CAMHS referral, where you will probably be told it's all caused by their autism anyway. There should be, but there just isn't any support post diagnosis.

Would Dd have a think about watching some You tube videos about autism in girls or researching it a bit with you? no pressure, just maybe very gentle encouragement over time. It's hard for parents, that's for sure.

10green the EHCP does contains mental health support but it says it will be provided by CAMHS, who are written into every part of section F. The EHCP says Ds will have contact with CAMHS fortnightly. At the start of this week I emailed them as nobody had made contact for a month. I'm feeling like no progress is being made. I think they may need to refer Ds on if they are finding him too complex. I'm worried he will get lost in the system.

Lockdown means that Camhs support is now massively restricted and it's difficult to question anything. No home visits allowed and school won't let CAMHS in to see Ds (Ds is currently at home but going into school once a week). So once some normality has resumed, I'm going to have to push.... again.

Punx if it is in F and specific and quantified the LA are legally responsible for ensuring the provision is delivered even if it states CAMHS to provide. If CAMHS can't provide the LA must commission independent providers (or pressurise CAMHS). You can force the LA via JR.

Don't wait to complain to CAMHS, the longer he is out of their mind the harder it will be to get the to provide support. Insist on support or onward referral.

10green they have actually written the twice a week contact in section G - health provision.

They have also written in section G that community CAMHS will make a specialist referral in relation to Ds's eating/severely low weight. He's lost 8kg since last summer putting him below the 1st percentile. The ED team have suggested the eating issues Ds has, doesn't fall within their remit. So we have been told to go back and 'see the GP for support'.

For the first few weeks, there were fortnightly appointments and there seemed to be a plan for his care. CAMHS attended EHCP meeting and all seemed positive, we were even reassured and told that Ds will be under CAMHS care until he is 18. But since then it has has tailed off and I had to chase last week after a month with no contact at all.

Not sure why I wrote twice a week, it's once a fortnight. Twice a week would have been very optimistic, especially for CAMHS!!

Therapeutic provision that "educates or trains" should be in F. General support and monitoring should be in G, but CBT, mindfulness and other therapies needs to be in F so you can enforce it.

Losing 8kg should be ringing alarm bells. Have you looked at the Marzipan checklist? Insist on a referral to someone who can help, even if it's OOA. DS1&3 have an uncommon ED that the ED team said wasn't their remit. We are lucky, DS' see a dietician as part of a medical team they are under and have overnight feeds. But if they weren't I would have challenged it as DS1 hovers around 0.4th BMI centile and DS3 around 2nd.

Just catching up with this. Thanks for the advice 10green. ED team can't help as it's not anorexia or bulmia. There has been a suggestion of ARFID but no diagnosis. Ds is currently around 49kg at 6ft, not unwell as such but has low energy levels. Camhs worker says they are concerned but can't offer anything.

We had one off dietitian appointment for fussy eating just over a year ago but he's lost the 8kg since then. At the moment it looks like it will be back to the GP, if we need help.

That's the same reason our ED team gave for not seeing DS1&3 - not ARFID, another uncommon one. Ask to be referred out of area as some ED or feeding teams do help with ARFID, as do some ASD teams. If you want to go private I have heard brilliant things about Dr Gillian Harris and Dr Rachel Bryant-Waugh.