Autism, masking, and building a more inclusive world

Readers respond to an article by John Harris on the rise in the number of people labelled autistic over the last 20 years

John Harris’s article addresses all the main issues that are being debated around autism (‘The term is becoming unrecognisable’: have the experts who believed in a single autism spectrum changed their minds?, 1 November). However, I feel it did not go far enough to broaden our understanding of the challenges experienced by autistic people who do not have a learning disability.

From a young age I sensed that I was experiencing the world differently to other people. I was bullied, and worked hard to fit in. I was fortunate as structurally I had a stable life that mitigated some of the more challenging aspects of my life. Things started to get less manageable when I entered adulthood and left home.

Since the age of 25 I have experienced bouts of depression and ongoing anxiety, often resulting in breakdowns, or what I now understand to be autistic burnouts. Throughout adulthood I have seen numerous medical professionals and repeatedly been directed towards therapies, designed to deal with anxiety and depression, which have had limited success in addressing my life challenges.

Despite having a postgraduate education, I have struggled to hold down many jobs and have had to leave most due to stress. I have ongoing relationship problems. I don’t have children, partly due to reluctance and health issues. I suffer from fatigue and sleep issues.

I was finally diagnosed with autistic spectrum disorder at the age of 53. My diagnosis has allowed me to understand my life; what has been harder is getting other people (including health professionals) to understand how challenging it is for me. If there were more stories published that went beyond accounts of obsessional collecting behaviours or discussing whether people make eye contact, perhaps there could be a greater understanding of what autism can look like, informing experts on how to support people appropriately and how to categorise it. Louise King London

Having spent years working adjacent to mental health services, I have come across many people with “classic” autism. I remember when Asperger’s was dropped and “autism spectrum disorders” came into use, I initially mistook the “spectrum” as a continuum we are all on. I know I was wrong, but I wonder if this framework holds a broader social truth – a spectrum with classic autistic people at the far end, Asperger’s a little way along and most people between the middle and the opposite end.

I’m not autistic, but I’m socially uncomfortable. I can confidently present to an audience of hundreds and my grasp of language is good – but I hate using the phone, don’t like meeting people, avoid parties and need my own space a lot. I think that makes me an introvert, but that’s another term that has been adopted as an “identity” rather than a defined classification. As psychiatrists and psychologists taught me, most diagnoses are essentially descriptions; if a description sounds like you, is long-lasting and is a significant problem for your functioning, then you get that label. What this idea misses is that almost everyone finds some aspects of life functionally difficult.

Rather than continuously expanding clinical classifications to grant people validity, perhaps we should focus on creating a society where anyone (or their advocates) can declare what they struggle with, and have our communities and services respond with appropriate flexibility and understanding. Salli Ward Market Harborough, Leicestershire

John Harris quotes Uta Frith calling masking “completely unfalsifiable”, then moves on as if no one had tried to falsify it.

People have. Will Mandy’s group at University College London built the standard masking questionnaire and has spent years publishing its weaknesses, which is what good science looks like. Meng-Chuan Lai and colleagues measured masking by comparing how autistic adults present in a clinical interview with how they perform on social-cognition tests, a gap no one can produce simply by saying they mask.

At Birkbeck, University of London, Jagdeep Wadhwa-Brown is now recording neural activity in autistic adults during social tasks, alongside their own accounts of masking. The study is at an early stage, but it is exactly the kind of test Frith says cannot be done. The neuroscientist Francesca Happé has described watching the mask slip in a tired house guest. That is an observation, not a feeling.

Between us, every week we assess people who present with what is sometimes called “internalised” autism: people who make eye contact, hold down demanding jobs and have spent decades being told, like Abigail Stow (who featured in Harris’s article), that they “can’t possibly be autistic”. The measures need work, and the researchers say so. But “the measure needs work” and “the phenomenon does not exist” are different claims, and only one was put to readers. Dr Louise Legg Counselling psychologist, London Dr Emma Bede Clinical psychologist, London