EVERYONE will be familiar with the person who is brilliant at being present and absent at the same time. They sit at the back of meetings and contribute nothing. They sign off on decisions without any attention to their implications. They ‘manage’ the team by ‘empowering’ others to do all the work. They get what they need – the pay cheque, pension pot, status and power – by doing as little as possible.
These are people who avoid taking responsibility or making decisions. They float above the blood, sweat and tears of the people around them.
They are like parasitic wasps, laying their eggs in the lifeblood of an organisation before lying back and waiting for the goods to emerge. In Milan Kundera’s words, they live with an unbearable lightness and float above the good things in life.
I’ve realised this is the perfect way to make sense of the role of medical experts in the autism crisis. Doctors sit at the top of the autism industry. They have control of the process of assessment and diagnosis without bearing any responsibility for what’s going wrong or what to do about it.
Parents who suspect something is wrong with their child are beholden to teams of paediatric neurodevelopmental consultants employed by the National Health Service. There are very long queues for these services, and families can be waiting for years. Without a diagnostic decision, parents will struggle to get the additional support their child will need at school. All the nonsense about early diagnosis comes to nothing while you sit in the queue.
Yet the consultants who diagnose autism (and related conditions like ADHD) do so on the basis of psychological and behavioural criteria, not medical ones. The so-called ‘triad of impairments’ (poor communication, limited social interaction and repetitive interests) can be just as easily identified by a trained health visitor, psychologist or educational professional. Applying the diagnostic criteria laid out in DSM-5 does not demand medical expertise. I wish that it did.
Our experiences as parents, coupled with a mountain of research evidence, points to autistic behaviours being a manifestation of underlying immune, neurological and energy dysfunction. Yet this is precisely what our medical experts refuse to acknowledge. Remarkably, the neurodevelopment consultants have no interest in the underlying biological processes and mechanisms that give rise to autism symptoms.
On the one hand, the medics are there policing the process, and on the other, they are missing in action. When it comes to exploring, explaining and treating what’s wrong they have nothing to say. They are present and yet strangely absent at the same time.
In this, they are backed up by the army of regulators who control what they do. Indeed, the National Institute for Health and Care Excellence (Nice) has devised guidelines for the assessment and diagnosis of children with autism that instruct hospital leaders and clinicians not to do any routine medical examinations – deviating only when it comes to suspected genetic disorders and epilepsy, as indicated below:
(NICE CG128)
This remarkable document sits counter to the experience of so many parents whose children are crippled with bowel problems, immune problems, sleep problems and the self-harm that is likely a sign of their pain.
In truth, the medics are there but not there and they should be called to account. If autism is not a medical problem, why are they in charge of the process of assessing and diagnosing it? If autism is a medical problem, why are they not treating it as such?
How long can we let doctors have so much control without responsibility? How long can they avoid accountability for what they are doing? How is it possible to leave them sitting pretty while our children suffer so much?
The Government has recently commissioned an independent review into the assessment and diagnostic processes for autism, ADHD and mental health problems. It could start by addressing this mess.
While children, families, schools, councils, communities and budgets burn due to the rising costs of neurological disorders, the medical establishment looks down from on high, securing control over those golden tickets that take so long to arrive.
What’s more, once the diagnosis is done, the chocolate factory depends upon an army of non-medical people and services who are deployed to provide care, special education, payments for the loss of parental earnings and additional costs. Given the rising numbers of children affected, this has massive costs for us all. Those costs are enlarged by the absence of any treatment for the medical comorbidities that are overshadowed by the autism tag.
Sooner or later the medics need to be called to HQ for a rollocking. They should be told to make a contribution to understanding and treating the condition or relinquish control. They further need to be told to stop attacking the brave doctors who do try to do the right thing and find out what’s wrong with our kids. They also need to open their minds to the environmental threats that are challenging our immunity and causing the problem in the first place.
The medics are living too lightly when it comes to the autism crisis. Their lightness is becoming unbearable for us all. They need to be brought down to earth or relieved of their role.
This post was provoked by reading page 24 of the House of Lords report on the Autism Act (2009) where the authors are clearing the ground that ‘autism is not an illness’.
My first thought was that we would be better off if we did think of it as an illness. After all, it comes with conditions (comorbidities) that we do treat as illnesses – allergies, constipation, insomnia and anxiety. It is also diagnosed by doctors who deal in illnesses.
What’s more, people who want to think of it as being a ‘difference rather than a disability’ are deluding themselves. Or, if they are not disabled by their neurological condition, we need to use different language for the two groups.
Our son has a condition that is better understood as Paediatric Intestinally-Mediated Encephalitis and it would be better treated as this. However, he also has all the characteristics associated with classic autism. Kanner would spot him in a crowded room in a matter of seconds.
He talks to himself, makes noises, has odd postures including looking at his hands from the left, he sometimes claps and flaps his arms, and will put his fingers in his ears to block out the sound. He appears to be living in a world of his own. Given this, it would be much harder to win people round to dropping the label for him than it would be to relabel a highly successful adult who has a problem making friends. While the latter wears the label with pride and will be speaking for the community in many public forums, they have next to no idea what life is like for my son. It’s a mess and I fear that the mess will get messier before sanity comes.
This article appeared in the Autism Tribune on January 26, 2026, and is republished by kind permission.
