Anna Kennedy: Autism diagnosis is no badge of honour

LIKE many people and as a parent of two young men on the autism spectrum, I have recently read the comments by psychiatrist Dr Mike Shooter in relation to children and autism spectrum disorder (ASD) and also Attention Deficit Hyperactivity Disorder (ADHD). Statements like this do not help families who are struggling to get a diagnosis.

Autism charity Daisy Chain’s CEO says the waiting time is currently four years in Stockton to obtain a diagnosis – hardly the diagnostic conveyor belt some people who read Dr Shooter’s comments think may exist.

I must confess that, until now, I was unaware of Dr Shooter’s work, but it seems now he has chosen to address this deficit in the public arena at the same time he has published a book. I have not read his book, only articles published in recent national newspapers. His message is that, although he does not deny the existence of ASD and ADHD, he does suggest (amongst other things) that that these diagnoses are used as a badge of honour and/or a shield to protect failing parents from criticism.

I thought it may be useful for a leading autism ambassador to offer some objective commentary on Dr Shooter’s statements.

Anyone familiar with disability will likely have heard these criticisms before. What is not clear to me is what the real benefits of Dr Shooter’s badge and shield are? It may be useful to remind Dr Shooter that, in relation to both children and adults, a diagnosis doesn’t have any benefits. In the education of children and young persons, special educational needs are what matters; a diagnosis in itself is not relevant.

The legal advisor of our charity says that when it comes to adults (and children), being given the benefits contained in the Equality Act 2010, a person must have a disability which complies with the definition contained in section six – known as a statutory disability. A diagnosis is not required, and this has been the case for a few years now. That said, if a diagnosis is given and the impairments identified clearly indicate the existence of special educational needs and/ or a statutory disability, clearly the diagnosis has a practical benefit to the patient that goes beyond Dr Shooter’s “badge and shield”.

I suggest anyone who is irritated by Dr Shooter’s comments should remind themselves of the above. If Dr Shooter wants to know more about the relevant legal framework (and let’s face it – that’s what really matters) he is welcome to contact our charity, and we can take him through it.

ANOTHER elephant in the room relates to Dr Shooter’s implied criticism of diagnosticians – the people seen as qualified to give a diagnosis of ADHD and ASD. As I understand it, in the UK there is a select group of people seen suitably qualified and experienced to give a diagnosis. Whilst anyone can have an opinion on the existence or otherwise of a disability, only suitably skilled professionals such as chartered psychologists and psychiatrists etc. are able to diagnose and even then they must be persuaded they have the experience to do so. Clearly the entrance criteria to become a member of this class of people is exacting. Statements such as “autism is vastly over-diagnosed,” which have been attributed to Dr Shooter must mean that some of his fellow professionals are falling down on the job. I must say I was not expecting this from an erstwhile President of the Royal College of Psychiatrists.

Setting aside the above difficulties, I am slightly at a loss to determine what benefits Dr Shooter could be referring to. Dr Shooter may wish to revise his “badge of honour” theory in the light of the fact that a lot of children and young people including my own sons with an ASD or ADHD diagnosis face many challenges as far as their education is concerned. I come across many parents who have not been given the right educational provision for their children or are subject to an unlawful exclusion. In adulthood, it is a statistical fact that people with ASD have a disproportionally high rate of unemployment. Clearly Dr Shooter’s badge is somewhat tarnished.

With regards to the parental shield theory, again I find it difficult to recognise the purported benefits. Like many others, those affected by ASD are well aware of the deficits that exist in social case meaning respite and other services are often refused. In my opinion, far from being a shield, a diagnosis can be a magnet for criticism. It is not unheard of that a diagnosis is challenged by educational or social care services on the basis that the behaviours exhibited by a child or young person are simply a function or parental negligence or incompetence; sentiments which seem to channel Dr Shooter’s opinions.

People who are more clinical claim that such a response is designed to justify non provision of vital support services. One would like to think this is not the case, but in any event these real-life examples demonstrate how important it is to be vigilant and considered when making what in reality are blanket criticisms of parents.

In conclusion, I don’t dispute that Dr Shooter genuinely believes what he says. It may be that the nuance of his message has been lost. What I think I can say with certainty is that his reported message has not been generally well received and I would like to think he would correct this or explain himself further.