Autism and/or SEN must never be an excuse to deny mental health specialist services
Autism and/or SEN must never be an excuse to deny mental health specialist services
"Dear Mr Hancock MP, (and Welsh and Scottish and Northern Ireland Equivalent)
I am writing to you on behalf of the thousands of people who follow me on social media who share a common concern in regard to the lack of support and treatment afforded to mentally unwell children with autism and or intellectual disabilities.
Whilst I appreciate you may be burdened by the heavy load of Covid19, I ask that you take some time to recognise that this pandemic is impacting on the autistic community in a way that is making them especially vulnerable. Research in this area is still emerging, but studies tend to show that individuals with autism may be at far greater risk for suicide and show a much higher than average rate of suicidal thoughts and behaviours. One would expect that this would naturally invoke an instinctive propensity to do more to help those most vulnerable yet I have seen evidence suggesting that those most in need are being denied treatment and service for little reason other than because of their diagnosis. This distressing display of direct discrimination is ruining the lives of scores of families up and down this country. I have seen evidence from local mental health service providers which makes perfectly clear that even in cases involving youngsters who have either attempted or have threatened self harm they have been nevertheless discharged without support by their local mental health service because of their autism. Whilst contradicting one of the oldest binding documents in history, that written by Hippocrates, this approach is also exposing a dangerous disregard towards the duty to avoid unlawful discrimination which , unless acted upon, may in turn lead to the kind of embarrassing class action that most Government's may feel wise to avoid.
The primary argument advanced appears to be based on a flawed belief that mental illness comes with the territory in autism cases. I have seen a letter from a local CAMHS team describing that it will have to first "unpick" symptoms of depression that are believed to be consequent to autism rather than to a stand alone mental illness. This approach is flawed for two reasons
First the International Classification of Diseases (ICD), the globally recognised diagnostic tool, does not recognise depression including suicidal ideation as an ingredient of autism. If it is not part of the relevant criterion it is hard to understand why there appears to be any need to "unpick" symptoms relevant only to severe mental illness from those relevant to autism. Both are plainly distinct.
Second the UK's National Institute of Clinical Excellence (NICE) in its 2017 guidance "Autism spectrum disorder in under 19s: recognition, referral and diagnosis" which recognises that local autism strategy groups (responsible for the local autism pathway for recognition, referral and diagnosis of children and young people) should comprise of a team possessing the skills (or have access to professionals that have the skills) "needed to carry out an autism diagnostic assessment, for children and young people with special circumstances including" what it refers to as "coexisting conditions such as... complex mental health disorders" (para 1.1.9).
The propensity of two separate conditions potentially coexisting does not mean that either of those conditions if requiring treatment, should be ignored. Autistic people get depressed like the rest of the population, yet the rest of the population appear capable of receiving treatment whereas autistic children often cannot.. .
Equally people with autism may or may not also be depressed.
I can tell you with confidence that literally hundreds of families have informed me that they have experienced this kind of treatment rejection. Even in the most desperate situations parents have advised me that doors have been cruelly closed on them during their greatest times of need. I have received literally hundreds of letters from members of the public, many too distressing to recount here. Suffice to say that some heartbroken parents have had to pay the ultimate price.
I saw fit to write to NHS England recently. I asked if there was a national policy in operation which encouraged the prevention of treatment for those with autism who may also be inflicted by severe mental illness. A reply received recently sought to assure me that there was no such draconian policy in existence.
If that is so, then it appears to me that there is nevertheless evidence of the existence of national practice which appears to reject treatment to many of the most vulnerable children with autism.
Voices among my audience speak of it in terms of this being a national scandal. It is indeed scandalous that children including those threatening suicide are being discharged from a service at a time when they need it the most. It is scandalous that embattled and emotionally exhausted parents are being left to think up for themselves a strategy to try and save the lives of their children without any kind of support . It is scandalous that treatment is being denied to many desperately unwell children on the grounds that depression and suicidal ideation is being treated as an inevitably arising in consequence of autism. It is scandalous that many parents of children far too frightened to go to school are being prosecuted when they need help.
This approach is not only offensive to the autism community but it is also wrong in both in science and law.
As for science I merely once again refer you to NICE guidance. In its guidance "Self-harm in over 8s: short-term management and prevention of recurrence" states that people who have self-harmed should be offered treatment going on to record ;
."All people who have self-harmed should be offered an assessment of needs, which should be comprehensive and include evaluation of the social, psychological and motivational factors specific to the act of self-harm, current suicidal intent and hopelessness, as well as a full mental health and social needs assessment".
It records the need not only for assessment above but also for a comprehensive risk assessment before discharging a patient.
In its guidance for longer term management in regard to those who might self harm (November 2011) it states
"Consider offering 3 to 12 sessions of a psychological intervention that is specifically structured for people who self-harm, with the aim of reducing self-harm. In addition:
The intervention should be tailored to individual need and could include cognitive-behavioural, psychodynamic or problem-solving elements.
Therapists should be trained and supervised in the therapy they are offering to people who self-harm.
Therapists should also be able to work collaboratively with the person to identify the problems causing distress or leading to self-harm."
In cases of depression without self harm similar guidance is issued advocating support in form of medication and talking therapy.
It seems clear from this, that specific strategies are commonly recommended for those with mental health disorders rather than a process of automatic discharge.
Secondly even if, depression were an ingredient of autism or that we come to accept it commonly co exists , an approach involving discharge appears to disadvantage a person for something arising in consequence of their disability. Such an approach is unlawful due to operation of section 15 of the Equality Act 2010. Discharging a patient merely because they are autistic is in my view plainly unlawful.
Whatever the law and science may say there is in existence today a massive problem which is literally threatening the lives and well being of thousands of children in this country. For those well off enough to challenge such injustice a remedy may exist but that is not an answer for the millions of people who are unable to afford to take such action. These children are being ignored, the collateral damage perhaps , caused by a Government losing sight of what is happening on the ground?
Every single child in this country matters. A single life lost will shake the foundations and shock any decent modern society. A nation that forgets it's children is a nation that should hang its head in shame.
That is why I call upon you to take action. I call for it, not merely for the few that have the funds to use lawyers to take action if necessary in court (and believe me people will take action) , but for the millions of people who cannot. I ask that you instruct your department to issue specific guidance banishing to history a practice which seeks to endorse the refusal of mental health service to those with autism and or intellectual disability in favour of a policy that proactively encourages treatment, compassion and care for some of our most vulnerable. It is not a difficult task. Please instruct all local primary care providers to offer long term evidence based intervention strategies to support those who are in need. Discharging autistic people in need reinforces their isolation. Children with autism are often left alone.. A good Government is one that would strive to avoid making them feel alone.
Please come back to me urgently.
A few weeks later nothing appears to have changed...
Since sending this letter I posted this information on my social media page. It demonstrates that nothing has yet changed.
February 6th 2021
"Many parents have reported that they have been refused mental health treatment for their autistic children on grounds that their symptoms of depression or anxiety were "part of autism". You may recall I wrote to NHS England asking why a local CAMHS team in Hampshire had advised a mother that it was not, consequent to policy, commissioned to provide services to autistic children.
In its reply you will recall NHS England denied that it had any policy to refuse to provide services to those with autism
"..NHS England and NHS improvement has not set national access criteria or thresholds in relation to the commissioning of autistic diagnostic services."
I then wrote to the Health Secretary and the Welsh Government. The Welsh Government in its reply agreed with me that an approach in which young people are denied services because they may be autistic would represent a breach of the Equality Act 2010. It called for individual case studies to be put forward as evidence.
In meantime Mr Hancock in England has not yet replied but I anticipate he too will ask for case studies demonstrating need for change.
If it is true that national policy denying support to those with autism doesn't exist then it strikes me that a policy should be written to actively promote services to those with autism as it is plain as day that there is a practice of indifference toward autism and other intellectually disabled children when it comes to mental health treatment..
The national NHS long term plan issued in 2019 advocated for extending services to improve the lives of those with Autism.
In meantime I looked at one CAMHS team criteria in Cornwall. I wanted to see if anything had changed since I wrote my letters and posts. This is what the criteria today still states -
"Children and young people with autism spectrum disorder will only be offered a mental health assessment within CAMHS when there are indications of a mental health condition which go beyond the core features of the primary diagnosis of autism."
Whilst this statement is arguably open to interpretation it is premised on a presumption that mental health or depression comes with the territory in cases of special needs including autism. Similarly in cases involving intellectual disability it states
"A child or young person with a moderate to severe learning disability can often present with complex behaviours which may, or may not be symptomatic of a mental health condition. These referrals will not automatically access a mental health assessment within the specialist CAMHS service"
Yet if there is no assessment how can one unpick one disability from the other?
In the meantime believe me many children are hurting and some are dying. We are falling into a crisis unlike anything we have experienced before. Suicide rates are on the increase and mental health among children is in decline. Yet the English Health Secretary cannot find the time to reply to my simple request. To truly help save lives by extending a helping hand and direct that language be used in his guidance that cannot be interpreted in any other way. Language that advocates the need to support all children with mental health difficulties whether they have learning disabilities or not. Only then will practice change and only then will lives he saved"
We call upon the Government to issue and or amend statutory guidance to all Health services. We call for this guidance to be crystal clear. Autism and or intellectual disability should never be used as an excuse to deny specialist child and young person mental health support and services. Depression and anxiety is not part of the criteria for a diagnosis of autism