“Not Enough Traits for a Diagnosis”

Jeremy Hunt MP Jeremy Hunt, MP and Secretary of State for Health There is a creeping, insidious problem oozing it’s way through the NHS.  It is the failure to diagnose autism spectrum condition in people with autism.  The new claim is “some traits of autism but not enough for a diagnosis”.  Parents are being told that if their child is coping at school then they don’t need a label, schools are reporting that the child doesn’t show any obvious signs and this prevents a diagnosis being forthcoming.  Adults are brushed off without a diagnosis because they have managed to learn how to fit in – they still of course have autism/Asperger’s, but they are prevented from getting recognition of their difficulties and accessing support they need. I believe there is a secret directive to avoid diagnosing as many people as possible, or only to diagnose the most obvious cases, to avoid a drain on NHS and other state resources*.  This is of course ridiculous and unfair.  Not all people with diagnoses, or their parents, claim benefits or support – but if people need it, it should be there for them.  Autism is a condition the difficulties of which fluctuate according to the environment, and also presents differently in certain environments – such as a clinical one, so what appears one way in a given situation, may not be the full picture.

In December 2014 I became aware of this, which really goes to confirm my suspicions: http://www.dailymail.co.uk/news/article-2653518/32billion-bill-autism-Britain-costliest-condition-Total-cost-treatment-care-support-heart-disease-cancer-strokes-combined.html

Yes, the NHS is cash-strapped, and yes there are many competing demands – so the Government has to ruddy well put more money in to cover the demand.  Autism is not going away, it’s likely an epigenetic condition and the population in general is rising, so there are more cases of autism.  Failure to diagnose is short-sighted, because without support people end up with a whole raft of problems which in the longer term can end up causing more of a drain on resources than the one the NHS/state were trying to avoid in the first place! It’s bad enough that the NHS is full of arrogant clinicians, many of whom are not fully versed in autism as a condition, who fail people diagnostically every day, but when you add a furtive intention to deliberately fail to diagnose people to save money, the system is entirely broken. Autistic people can, with the right support, contribute to society in all sorts of ways, what about Leading Fulfilling and Rewarding Lives?  How can we be able to do that in the first place if the NHS is failing to diagnose people? Read this document, which I came by today (and was eternally grateful for having done so), it’s an absolutely excellent article/paper about those who fail to get diagnosed, are considered “mild” or just having some autistic traits:Invisible at the End of the Spectrum: Shadows, Residues, ‘BAP’, and the Female Asperger’s Experience” So it’s important that the NHS gets it’s priorities right, trains it’s clinicians adequately, and provides the service so many of us pay for.

Edited 18 months after writing this post, following the discovery that the NAS admits there is a directive not to diagnose autistics: http://www.autism.org.uk/about/diagnosis/criteria-changes.aspx

“In the UK we are aware of situations where clinical professionals have felt under pressure from their employers to under-assess needs in order to ration limited resources.”

Also to add, that is it any surprise there are gross failures towards adults despite the Autism Act?  Shockingly, according to the DoH statutory guidance, authorities’ provision of a diagnostic pathway; adhering to the NHS NICE Guidance on assessing adults with autism and triggering of post-diagnostic assessment of needs, only come under the “should” category, which means, despite the Autism Act 2009, nobody will be held to account if they don’t ensure these are in place and working for all relevant adults.  So misdiagnosis or missed diagnosis, which are all too common, will keep on happening.  What incentive will there be when autism is the most expensive diagnosis to support and bodies are trying to save money?

Thought for the day:

“Each of us is a unique strand in the intricate web of life and here to make a contribution.”

~ Deepak Chopra

12 thoughts on ““Not Enough Traits for a Diagnosis”

  1. This is so true! I have been through the horrendous NHS machine for the last 2 years and it has been a complete waste of time! I was misdiagnosed as having ‘Borderline Personality Disorder’ for which I had no traits! After two years and only 7 sessions which consisted of ‘mindfulness training’ because I was not ready for CBT! I feel much worse than when i began and the final session consisted of 3 professionals laughing at me and my thoughts of Aspergers, they actually said ‘Well we’re ALL on the Autistic Spectrum aren’t we?!!”. Then the main counsellor leaned forward and said to me ‘In fact I think I’m a little bit Autistic myself!’ Belly laughs all round….. 😦 So it was dismissed. I in turn signed myself out of the care of the CMHT and a week later received a letter encouraging me to leave their care, and apologising for my ‘mixed experience’ with the service. So even they could see it had been a disastrous 2 years.

    My GP has said she thinks I have Aspergers and I only need a diagnosis for clarity, I have been referred and am waiting for the appointment. I dread to think of anyone else accessing NHS Mental Health Teams and going through what I have been through, seeking support and acceptance and instead being ridiculed, misdiagnosed and ignored.

    I am terrified they will say I don’t have enough traits as I am really good at passing for normal 😦

    1. God you’ve been through a ridiculously bad time due to their failings haven’t you. Make sure the assessment you are sent for is an ASC assessment not a general psychiatric assessment. Make a point of saying that you have learned masking skills over time as many have (especially females) and ask that they use clinical tools. If you can, drop your “public persona”, and show the real, scary you underneath.

  2. Tried this earlier but don’t think it worked.
    This is marymary from pda.
    As you know, it has been suggested by camhs that dd be reassessed. At 17 it’s just a bit late!
    Having gone through mainstream school without any support she went from being classed as extremely intelligent, forecast all A s and A* at Gcse to scraping 5 passes. She tried college but couldn’t cope and now does nothing. Consequently my child tax credit and child benefit have been stopped. As I am on an Ill Health Retirement pension this has put us in serious financial difficulty. But without a diagnosis we cannot claim anything.

    The suggestion to reassess came about because I called the camhs crisis line and after chatting for a little while I was asked if dd had ever been assessed for autism. I was ringing because dd was extremely distressed and threatening suicide, not for the first time, plus I had found a load of pills she had been hoarding. She doesn’t understand why life is so difficult and she can’t seem to fit in no matter how hard she tries.

    This is what happens when told “Autistic traits but not enough for diagnosis” and you are left with zero support.

    Sorry for the rant but I want people to know why a diagnosis is important.

    1. It’s just terrible that you have waited that long for answers. She does have the opportunity once diagnosed, to have a statement/EHCP (and even without a diagnosis) and to have that support until the age of 25 if she re-enters the education system. The LA clearly have not done enough for her. It’s a huge failing on their part that her intelligence has been wasted and she has not achieved potential so far – which is her legal right with an SEN. Can you apply for DLA and Carer’s Allowance? They are supposedly not diagnosis based (even if in reality they sometimes are) but on needs. If you contact your local Parent Partnership organisation they can send a rep to help you complete the forms. CAMHS have really failed you too as they are supposed to support with or without a diagnosis. Don’t worry, you aren’t ranting, you are just being honest and TBH I would be furious at their failings in your situation. As her carer you can also request social services do an assessment of your needs as her carer (which should offer something especially as you have ill health or disability). There is lots out there, Parent Partnership should also be able to signpost you. You shouldn’t be left struggling like this. You might need to start putting your foot down with services.

  3. Thanks,
    I will look into all of your suggestions,I need to get this sorted.
    Many other problems atm but this must be a priority.

    Just an example of how different our children react.
    On one of the parenting courses I was sent on we were told about “actively ignoring” bad behaviour. I tried this with dd and, long story short, she came at me with a kitchen knife, picked at my clothes with it saying, “Are you going to ignore me now?”
    When I told the leader of the group this he said, “So you have made a choice not to use that strategy”. A choice!?

    Sorry, ranting again lol
    Many thanks for info, most helpful

  4. Parenting courses don’t work for children with neurodevelopmental disorders – which is why it makes me so mad that services have a blame culture and before assessing for such conditions they send parents on futile parenting courses!

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