NHS could stop diagnosing child autism in Merton

[determinedmumof2]

Report in wimbledon guardian, have copied the link to full report below. NAS is aware and ask the Merton NAS group to share.

Children may no longer be able to get NHS referrals for assessment and diagnosis of Autism Spectrum Disorder (ASD) in Merton.

South West London St George's Mental Health Trust discussed plans to no longer accept referrals for assessment and diagnosis of ASD in children at a board meeting this month. Children would only be referred if they have an additional mental health condition that requires treatment, such as attention deficit hyperactivity disorder, or depression.

A spokesman for the Trust told Wimbledon Guardian no decision has yet been made, but it was proposed children with suspected autism should be managed by schools and other services, and do not require formal diagnosis of autism.

To see full report see
www.wimbledonguardian.co.uk/news/15306391.NHS_could_stop_diagnosing_child_autism_in_Merton/

I can't say I fully understand this but it sounds like a very big deal. Would these children be able t be referred out f rhe area? Or is it simply that they would remain undiagnosed?

Yes they will remain undiagnosed. Unless they have another mental health condition that requires treatment.

They have some delusion you don't need a formal diagnosis to get the support and services you require and these can be obtained without a diagnosis.

This is totally horrendous. Am not far from
Merton and I've just read the offending meeting minutes and it seems there is a backlog of assessments and they got some additional funding to clear that but that will run out and then there is capacity for 750 diagnoses a year but 1300 referrals a year are being made.

I think, in effect, it's happening here. Under 5s are seen by the CDC but over 5s CAMHS for over 5s. The bar for referrals is so high that in reality no 'just' ASD child could meet it, you'd need self-harm/ major depression/ epilepsy or something (not just anxiety- that'd get you a leaflet...)

I was warned to accept a referral when dd was 3 and not dither because over 5 she'd at best be seen after many years wait, if at all.

Another neighbouring area simply has no pathway for over 5s at all as a friend has discovered

Can i ask what area this is please, as will be an important bit of information for NAS thank you

Zzzz it understand what you are saying, but from what i understand is that the changes will effect those who are at the high end of asd being mainly girls. My daughter wants to be able to tell teachers, peer why she different and also be able to understand herself more, to find thing thst help her in her daily life. I think she has a right to this.

While it might not lead directly to more support, I doubt very much whether I would have had the confidence or the evidence to pursue a statement for DS without his diagnosis - he has AS and dyspraxia but is the sort of child that people say "you'd never know" about. It also means he can access sport activities etc for children with SNs through the local council scheme - for example he has had 1-1 swimming lessons when classes failed for him. It is endlessly useful when explaining to childcare providers etc that he needs a bit of extra help or may react badly to loud noises. It has helped him to understand why he's not like other boys. He does not have mental health issues, but without his diagnosis he may well have done by now.

It depends whether things like Autism outreach and similiar ASD services will be available to the "undiagnosed but likely to have ASD" children. Ditto ASD units, ASD specific schools. I'm not that up on the Equality Act, but again would those children who fall outside of being assesed have any protection under it? And it would seem to push the responsibility onto education. Which is fine if the school agree the child is undiagnosed but likely ASD and should be supported, but what if the school thinks it's "just" a parenting issue and opt for discipline over support? Does the GP get to decide?

From a personal pov, the only service that has benefited DS1 is the ASD Specialist Teacher, and he's going to an ASD unit within a mainstream secondary. Both require an ASD dx to access.

I think it already happens tbh for some children.

And I think it's wrong they have to fail drastically just to go on an assessment pathway that takes years and then even if they dx there often isn't the support they need.

Often the MH difficulties are a result of undiagnosed need.

Yeah I agree and was trying to find a way of linking lack of support being a result of lack of diagnosis - except we know in reality those 2 things don't go hand in hand either!

I guess in some ways if the support is there without a dx that may prevent the MH difficulties but in reality when and where does that support end? And what happens when it ends? What protection do these children have to support them into adult life and employment without a dx?

Will reasonable adjustments continue to be made in adulthood without a dx?

It's a vicious cycle without the patient at the centre.

Agree totally about the protected characteristic, no diagnosis means no disability in terms of the Equalities Act.

No diagnosis often means no support, which will surely lead to more severe and difficult to treat MH problems?
Plus, you hear so often that if you do manage to have a referral accepted any MH is seen as typical of autism and therefore not treatable.

Shocking. And so shortsighted. So many possible attributable health costs.

Speaking for myself, I need to know for sure either way if my DS has ASD. The constant is or isn't is literally making me lose my mind. I am pre-occupied by it and not able to always give my other children the full attention they need, because I use every spare moment some days to research.

And going to visit family is a nightmare, because he is also a kid who seems normal, but introverted and quiet, unless you spend a lot of time around him. Nobody notices he doesn't communicate because he is a toddler and it is only obvious when another toddler his age is in the room.

So I am continually getting the: he will be fine. He just needs a loving environment and more excercise. Or: what vaccination did he have last. Or: you should clean up his diet. Etc etc etc etc. To the point where I feel constantly that everyone believes it's "just bad parenting". I avoid these social situations now. And I look forward to the day when I can say: there: he has been diagnosed. It's not my fault.

And there I was complaining that our local trust only does assessments at 31 months and not sooner.

(Sorry for the slight derail )

It's disgraceful, but I'm not surprised. Merton has been refusing to refer adults with autism for diagnosis for a few years now. And doctors actively dissuade adults from pursuing the matter. How can that ever make sense?

Is the NAS going to campaign against this? If so, can they cover adults too?

Without a dx it is very easy to doubt oneself, to believe teachers when they tell you nothing is wrong or that your parenting is the problem. It is part of an individual's identity and how they see the world, without it they might just think they are not trying hard enough or there is something wrong with themselves. Many autism specific supports do still need a dx to access. If this is opened up to those without a dx, who decides? I think you should be able to access support without a dx but someone has to be gate-keeper and I wouldn't want that person to be someone who did half a days training in SEN as part of their teacher training ten years ago and who has very stereotyped views of ASD.