An autism diagnosis, but where’s the treatment?

Your coverage of the Fonagy review concentrates on children and on the risk of diagnosing too readily (NHS at risk of ‘system failures’ as demand for ADHD and autism care soars, inquiry finds, 9 October). I’d like to speak for those of us who were not diagnosed at all.

I first asked for help at 17. For 34 years I was treated for anxiety, depression and trauma. All were real; none were the whole story. I was diagnosed as autistic at 51. The same report identified ADHD, which until 2013 could not officially be diagnosed alongside autism.

I am still waiting for that ADHD assessment. ADHD is the one for which there is medication, but I cannot get to it. For autism there is nothing: you are given the diagnosis and sent home to deal with it.

The review asks for support based on need, not labels. I’d welcome that. But I have the label and the need, and neither has brought support. The diagnosis explained my life; it did not come with any help to live it.
Rebecca Hope Duncan
Southampton

• Your editorial (11 October) correctly identifies the need for improved prevention and treatment of neurodevelopmental disorders, rather than rehearsing debates about diagnosis. Here are three additional suggestions.

First, neurodevelopment largely occurs during sleep: neuroplasticity is what sleep is for. Many infants and children are sleep-deprived, so a national public health programme on improving child sleep hygiene will prevent and ameliorate the severity of future neurodevelopment disorders.

Second, depression. Many young people with autism spectrum disorder and ADHD also fulfil criteria for depression, which is treatable at GP surgeries with combinations of exercise and pluralistic psychological therapy.

Third, work: to not work is bad for the mental health of young people with neurodivergence. If you can exercise, you can work, so the government could follow Dutch and Danish models and return to the supported employment and tax credits previously devised by Gordon Brown, undone by the political vandalism of Tory/Liberal Democrat austerity.
Jeremy Seymour
Retired consultant psychiatrist, Sheffield

• Your editorial mentions that “the rises in psychological distress, and the need for support with neurodevelopmental differences, are real and tied to social changes”.

If the problems are tied to social changes, why is it primarily a healthcare issue? Wouldn’t we be better off calling out the “social changes” and addressing them?

It’s possible to do that while acknowledging the reality of the suffering of those involved, dignifying it in fact. By focusing entirely on the symptoms, we risk ignoring the root, and in doing so will allow more children to suffer.
John Bryant
GP, Bristol

• Given the alarming rise in childhood mental health problems, why do we allow our children to be fed on ultra-processed foods (UPFs)? Childhood anxiety is on the rise globally, but the UK is in the worst-performing group of wealthy nations in virtually every measure of child and adolescent mental health. Coincidentally, British children also have the equal worst diets in the world – along with the US – in terms of consumption of UPFs, which make up around two-thirds of their diet. A 2026 systematic review found a clear association between child and adolescent consumption of UPFs and mental health problems such as anxiety, depression, irritability, sleep disturbances and suicidal ideation. And a Canadian study of over 2,000 children found that as children ate more UPFs, they faced increasing risk of emotional and behavioural problems, and that replacing just 10% of UPF calories with minimally processed real food, lowered children’s behaviour problem scores. Until the government is ready to stand up to the powerful food industry and ignores the inevitable cries of “nanny state”, this won’t change.
Peter Deadman
Hove, East Sussex

• The differing explanations for the huge rise in diagnoses for autism and ADHD arise, I believe, from a general problem in the diagnosis of mental health conditions. In physical medicine, diagnosis includes not just the description and classification of symptoms, but identifying the underlying pathology that gives rise to the symptoms, and where possible the cause of this pathology.

A symptom such as a headache, for example, can arise for a variety of reasons, and a diagnosis will determine what its origin is. The characteristics of the headache, such as severity, exact location and duration, will give clues as to the underlying cause, but this can only be determined accurately by medical tests. There are some conditions where a group of symptoms regularly occur together but where the underlying pathology is unknown; these are classed as syndromes, and the names for them are descriptive rather than true diagnoses.

In the area of mental health, there are few if any diagnoses in the strict sense, and the terms used are descriptive rather than truly diagnostic. Even for the most severe conditions, such as schizophrenia, the underlying pathology is unknown, and this is even more true of conditions such as depression and anxiety, where the distinction between normal reactions and conditions severe enough to be regarded as illnesses is unclear.

Nobody seriously questions that the phenomena of autism and ADHD exist; the question is whether the concept of diagnosis is appropriate. If not, the distinction between what is “normal” and what is a “disorder” is arbitrary, based on the severity of the problems experienced and how well someone is able to function. The criteria for autism have been broadened to include people on the “spectrum” with much milder difficulties than in the past, while ADHD is a condition that has only recently been recognised at all. It is therefore not surprising that many more have been diagnosed than in the past. However, it also raises the question of whether, in the milder cases, they should be regarded as “disorders” as opposed to differences in personality.
Steve Bamford
Littlehampton, West Sussex

• It’s not just young people who have been let down by the lack of diagnosis and care available to those with ADHD and Autism. My 70-year-old wife has suffered from one of these conditions throughout her life, along with many others of her generation. Had she been diagnosed at an early age, she would have had a much easier, more successful and fulfilling life. However, National Institute for Health and Care Excellence and NHS guidelines in the UK did not recognise ADHD as a valid condition in adults until 2008, when she was aged 52 and her condition began to become more evident postmenopause.

Being born in the north of England in the 1950s meant there was little or no chance of her receiving a childhood diagnosis that would have made her life much more understandable. Today, living in Scotland where the NHS does not offer the “right to choose” for ADHD assessments, she would face a median wait time of 111 weeks, with some waits as long as 266 weeks and currently 8,886 adults in the queue. Not surprisingly she continues to remain undiagnosed along with many others.
Name and address supplied

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