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 think I understand zzzzz's point, although that sounds rather arrogant, zzzzz, as you say you aren't sure you understand it yourself . To give a tangible context, I could point to DD2. I've known since before she was 3 that something wasn't typical about her behaviour. It's caused her 'difficulties' since she was 5 (had to leave school 1), but she couldn't get help because school 1 didn't even see her difficulties.

School 2 saw that she was 'anxious' and 'Mum had worries' but wrote off her functional language difficulties as she was 'coping'. She had to leave that school and we home educated.

Except that HE didn't go too well because she wouldn't socialise, and wouldn't do anything other than what she wanted to do because of her fixed mindset.

Now in school 3, they do see her difficulties. They think she has ASD. But we are hurtling towards Secondary Transition with no special measures in place because we've been in a referral queue with CAMHS for 6 months for them to tell me something that I've known for 6 years. If we get through the diagnosis process and we finally get a piece of paper telling me something I've known since before she was 3, then we might get some help, but it will be too late to get any choice in which school she goes to for Secondary school.

Madness.

As many of us have experienced schools are not expert in identifying and supporting children with an ASC. The primary mainstream school my ds's attended were as desperate as us for help as they had not encountered anything as extreme before let alone double trouble. They could not access agencies like autism outreach without a diagnosis even though an ASC was strongly suspected. The biggest thing was that were frightened of making matters worse by doing the wrong thing.

Yes, the education system has provided more help (eventually) than all the other agencies put together but this would not have happened without a diagnosis. ds1's current school placement only takes children with an ASC so how would that work if no children were diagnosed. Perhaps only those children whose parents can afford a private assessment. Pretty sure the two LA primary ARP's only take children with an ASC diagnosis too.

I do understand there are budget problems but this policy is simply a short sighted pass the parcel strategy without thinking that the long term likelihood is higher costs later on as more children develop mental health problems because they do not receive early intervention.

"more children develop mental health problems because they do not receive early intervention."

That's really interesting, isn't it? Chicken and egg, where do you put the resources? I was thinking about that in regards to social services. A social worker was saying 'there are no jobs in mental health, but masses in child protection'. I thought, 'if there was more mental health care, perhaps the need for child protection would be lower?'

Yes NAS is campaigning about this they have all the paperwork local group are awaiting their action plan.

As soon as i get the links from NAS i will put them on mumsnet. Thank you for all your comments

Here I would say that the MH side of things is not helped by dx because there seems to be an odd "yes that's often seen with asd" vibe." As though that absolves them of providing anything.

^this.

That's exactly the attitude we for from the academy. Everything was "that's typical of children with asd" without the support to counteract that.

It led Ds to suicidal thoughts and self harm and need for referral to Camhs and CBT.

www.bbc.co.uk/news/health-40058482

One big benefit of assessment was finding out which bits of autism my child had. All the kids I know with ASCs are different. Is it sensory? Social? Sameness? Communication? The paediatritian got an overview. The SALT nailed DS's communication issues in one session. The clinical psychologist nailed his anxiety, boundary issues and hs instinctive response when a boundary was crossed (defiance and anger). We had an OT assessment and it turns out DS has only one or two physical/ sensory issues. I couldn't have figured that out for myself, nor could the school, they're not qualified. You can't separate support from assessment, half the time they'd be doing the wrong thing.

No salt for ASD, no CAMHs as it's part of the ASD etc).

I know, that's shameful too. It does my head in because access to SALT was exactly what the diagnosis brought my DS.

But refusing to diagnose is not the answer

I'm so worried about this.....
It's a total disaster it's another step up the "Not really a disability" ladder.

My AS kids don't need a lot of support but for them the dx is crucial. It leads to understanding at school, and allowances being made. It means, crucially, they don't get disciplined for 'being autistic' at secondary level.

A diagnosis saved my teen dd's life, her suicide attempts stopped when she understood herself and she finally had an answer.
She also now receives pip and a disability grant at uni and protection under the disability act.
I am so angry, those poor children and families.

Are they trying to avoid funding additional support for children with autism at school? We have autistic children who need full time 1-1 TAs, some who need part time, and some who don't need any. By refusing to diagnose, they're making it almost impossible for those that need this kind of help and support to actually get it and dumping the problem on schools that don't have the resources, money, time or expertise to cope.

Protection under the Disability Act is an important gain for adults seeking a diagnosis. It is outrageous for GPs to refuse to refer.

OP, the journalist Quentin Letts, who writes for the Daily Mail (sorry) and other outlets, has a son with autism. He would be interested in this story.

i cant believe this could be happening i cant help think its all down to money. money for providing services that people with autism desperately need. Money for benefits that people with autism also need to help pay for extra supports/specialst care that may be required (NOT available without a formal diagnosis). I also wonder if not diagnosing autism has anything to do with statistic side of things. Just because they haven't been diagnosed, does not mean they don't have autism. Likewise there could be people out there believed to have autism but getting the wrong kind of support because they don't in fact have autism but another condition.

are families just be left in the dark about how to help their children?

Imagine if there were a refusal to diagnose other conditions because of lack of money to pay for support. I can't think of another example of this. Just not diagnosing is utter madness - it's depriving the person of crucial information about their own health.

This would be a meeting worth attending:

www.mvsc.co.uk/news/share-your-views-health-and-social-care

Is this about the same thing? www.autism.org.uk/get-involved/media-centre/news/2017-06-02-swl.aspx