How mentally unwell does my child need to be to get an ASD assessment?

 image used with courtesy from Flikr Creative Commons

Yesterday I read a news report on the BBC about autism, I wonder if you saw it too?

It detailed proposed plans by NHS commissioners in south-west London to restrict an autism diagnosis to only the most severe cases.

The service, like others in the country, is overstretched with waiting times for assessment now at 10 months and numbers being referred increasing to beyond current service capacity. The NHS Commissioners have therefore asked the trust to review who is eligible for the Autism Diagnostic Service and the response has been to propose that only children who have another mental health condition will be deemed eligible for an assessment.

Think about that.

Only children who have another recognised mental health condition will be assessed for autism.

Taking my son, Edward as an example. He learned to talk and reached his developmental milestones without giving any real cause for concern. Although there were early signs that he was on the autistic spectrum it wasn’t until he was in school that I became more concerned about the difficulties he was having. His literal interpretation of language and inability to read social situations meant that he often appeared rude, insensitive or disobedient. He had no friends in school but his teachers were not too concerned; after all he was doing well academically and reaching his educational targets and besides there were other kids in his class with more challenging behaviours than him.

I requested an assessment for the first time when he was in reception. It was a battle and it took a long time but we got there in the end.

Having a diagnosis of ASD at the age of 8 has been life transforming for Edward and us.

It reframed everything and put him into a context that helped us understand that he saw and experienced the world differently.

We learned a lot about autism and made a myriad of reasonable and small adjustments in order to make life work better for us all.

For example, we started to be more careful in our use of language because we knew he interpreted everything so literally and we gave him more warning and information about up coming events which helped him to stay calm.

Our wider circle of family and friends grew in their understanding and patience towards him.

Maybe most importantly of all Edward’s perception of himself changed. He had begun to think he was “bad” but getting the autism diagnosis helped him see that it was due to having autism that he struggled in social situations  and with sensory overload. He also became more receptive to our efforts to help him learn strategies to compensate for the social difficulties he experienced because he knew he had recognised and validated difficulties to overcome.

Without a diagnosis we would not have been able to access support from our local autism specialist service who provided training to Edward’s school teachers. That input came at the right time as Edward was beginning to disengage from school and had  started referring to sunday evenings as “the night of doom” , the cusp of another dreaded week at school. This was how he felt about a great school with staff who listened and took on board suggestions. I’m all too aware that so many kids with ASD have less understanding school environments.

Thankfully to date Edward has not had a mental health crisis. I obviously have no way of knowing for sure what his mental health would have been like had he not been diagnosed with ASD aged 8.

My son is thriving now after years of support and understanding both at home and in school which came as a direct result of his ASD diagnosis.

At this very minute he is hiking somewhere in North Yorkshire, having spent last night in a tent with six other friends on a practice run for their Duke of Edinburgh Bronze award. Sure, he’s packed slightly differently from the rest of his group in that he has a couple of political paperbacks in his rucksack in case he needs an emergency read as a break from social interaction. His friends get him; he’s part of their group. My son is on the pathway to getting some good qualifications and finding a career he can excel in. He can talk with confidence to other people and generally he’s good company. Life is good at the moment.

I believe our story would have been very different without getting that ASD diagnosis all those years ago.

Would I now be parenting a teenager with such high levels of social anxiety that they could not leave the house? Would I be worried that my child was the victim of bullying due to their social vulnerability at school? Would I be checking constantly to make sure that my child was not self harming? Or even worse would I be counted amongst that group of parents who have lost a child to suicide?

How much do the commissioners of this service at Merton CCG need our children to suffer before they are considered sufficiently mentally unwell to merit an assessment for ASD?

I thought the mantra of the NHS was that prevention is better than cure.

Early Diagnosis and good support for children with ASD surely reduces the likelihood of developing long term mental health illnesses such as anxiety, depression and OCD, commonly associated with autism.

I hope that Merton CCG and South West London St George’s Mental Health Trust get the message that these proposals are not acceptable and that they do not implement them.

Proposals like this do however shine a light on the shortfall of current NHS funding – the general election is just round the corner and I hope you have registered to vote. Which party do you think will be good news for the future of the NHS and education in this country?

Even if you do not live in the areas affected by these proposals be sure to know that if this proposal is approved other commissioners will look for their Trusts to follow suit.

I think it’s time to make a fuss and stand up for the vulnerable, wouldn’t you agree?

 

News Update – 2nd June 2017

You spoke and they listened! Thanks to the hard work of the National Autistic Society and the many people like you who wrote letters, sent emails and tweeted concerns these proposals have now been scraped.

Here’s the statement issued today by the National Autistic Society.

So the immediate need to take action (see below) is over – I’ll keep these details below just incase we do need to send reminders about the importance of early and tinely autism assessment and diagnosis in the future.

Follow the story on twitter #autismdiagnosiscrisis

Contact the Merton Care Commissioning Group who make decisions about the allocation of funds for NHS spending in this area. Dr Andrew Murray is the clinical chair and Sarah Blow is the Accountable Officer.

NHS Merton Clinical Commissioning Group
Fifth Floor
120 Broadway
Wimbledon
London SW19 1RH

Tel: 020 3668 1221 

email MERCCG.SWL@NHS.net

Twitter: @NHSMertonCCG

Merton CCG is part of the South West Londoon Collaborative Commissioning team and their email is  swlccgs@swlondon.nhs.uk

The next board meeting for Merton CCG is on 27th July 2017 1.00 -4.00pm at the address given above. It is open to the public who can send questions to the board up to 48 hours before the meeting date. For more information please follow the links below.

David Bradley

South West London St George’s Mental Health Trust

Trust Headquarters
Springfield University Hospital
Building 15, 2nd Floor
61 Glenburnie Road
London SW17 7DJ

If you find it hard to get started with a letter the local NAS Merton group have a template letter you can tweek and use.  Just click here!

I’m pleased to say that my fellow parent bloggers have been quick off the marks to repsond to this proposal. If you want some other parent perspectives here’s a few!

Was This In The Plan

It’s a Tink Thing

Life , ASD & The Rest


Spectrum Sunday

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7 thoughts on “How mentally unwell does my child need to be to get an ASD assessment?

  1. This is such an important issue for everyone in the autism community, and highlights how much of a challenge we face in trying to get a diagnosis and support for our children.

    Waiting for a crises and mental health issues to occur, before stepping in with a diagnosis is definitely not the answer.

    Let’s hope that they see sense, and are persuaded to find another way to ensure that all those who need an assessment are able to get one despite the limited resources. Maybe now is the time for thinking about how to simplify the process to make it less stressful, and costly, for all.

  2. I am a SEN barrister and missed the BBC comments so thank you for your information. I will send my views to those listed.
    Somewhere along the line it looks like someone has forgotten all about the SEN legislation and duties of the LA. SEN law can now apply from age 0 yrs to 25 years.
    Perhaps all parents in those areas who suspect autism is affecting their child’s progress ought to apply for an Education and Health Care Plan.
    An educational psychologist’s report is automatically required if LA agree to assess so that autism should show up. If LA refuse to assess appeal it and be steadfast in what you want.
    Parents do not normally need a lawyer to do this.
    IPSEA is a great website for parents of children with SEN. Good luck all.

    • Thanks for leaving this comment Janice – really helpful. It’s so good to know that there are others out there raising concerns about these proposals too!

  3. A parent of an autsitic child left this comment on facebook – It’s just so wrong! Our experience of CAMHS was honestly excellent (when we finally got there!!!) and my son’s assessment was really thorough. This included making sure he had no other mental health difficulties beyond the diagnosis he received. Mercifully, at present he doesn’t. Therefore under these proposals he would not be eligible for treatment; he would remain undiagnosed, untreated, and I dread to think where we would be now if that were the case. As with most restrictive proposals, these are frighteningly short-sighted. It will cost so much more in the long term to treat a generation of young people who have been left undiagnosed and who’s difficulties will have inevitably worsened. The myriad of potential associated mental health problems are very real for these young people how can anyone propose that they be left to suffer? I’ll be writing!!

  4. Well done, Lynne. I wonder, does anyone know why the Trust and CCG proposed this? Are cost reductions the only reason behind the headline?

  5. I am so glad that these plans have been scraped. Yours is a great story for illustrating how vital it is that all children who may need it have the opportunity to be diagnosed and get support. Thanks so much for linking to #SpectrumSunday. We hope you join us again.

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