It’s a cruel trick not to know your own brain. Many autistic people spend years not knowing that they are autistic. They feel that they are broken because they are not like most people. This is a tragedy, as is the news that adults in Oxfordshire may have to wait 18 years before being assessed for autism.
Three years ago, I was so depressed that I thought about taking my own life. I contacted the Crisis Resolution Team and within two minutes, the woman I was speaking with on the phone asked me if I had ever considered that I might be autistic. In November 2023, 20 months after I had asked my GP in Worcestershire for an assessment, I was diagnosed as autistic.
In November 2024, the Oxfordshire Adult Autism Diagnostic and Support Service (OAADSS) closed to new referrals. The service website states that its current waiting list of over 2,000 people will take over 18 years to clear, and it encourages people to direct their dissatisfaction to service commissioners and their local MP. This chimes with comments made last year by Christine Price, Chief Officer of Healthwatch Herefordshire, in relation to ADHD assessment times: “I think that because we’ve got this huge increase in demand for assessments, the NHS needs to think nationally about a different model for how we diagnose and assess people.”
AuDHD
According to a recent academic article ASD and ADHD Comorbidity? What are We Talking About? 50-70% of autistic people also have ADHD. I had never considered that I might have ADHD until I had received my autism diagnosis and began reading about ‘AuDHDers’. I was not prepared to wait another 20 months for an assessment, so my GP recommended that I seek an assessment with a private provider through the Right to Choose pathway. It took just four months for me to be assessed after making my request, and although it was with a private provider, I didn’t pay an extra penny.
Lucky me. Eight months later, Herefordshire and Worcestershire Health and Care NHS Trust stopped accepting referrals for ADHD assessments for adults, blaming a lack of capacity. In response, County Councillor Dan Boatright-Greene, who also has ADHD, said, “This is a short-sighted decision which will cause the NHS problems elsewhere. The whole system needs a rethink. That includes how we approach neurodiversity as a society”.
In her book Autism is Not a Disease: The Politics of Neurodiversity, Jodie Hare writes that “autism is a natural neurodivergence…[it] is thus not a disease to be pathologised or ‘cured’, but a natural part of human existence that, while it brings its own challenges, is predominantly disabling because our social environments are constructed to isolate anyone who differs from a predetermined ‘normal’”.
Self-understanding
Hare was herself diagnosed as autistic when she was twenty-three years old, having experienced “relentless depression” and a month in a psychiatric ward. Her autism diagnosis led her to an online community of autistic people. She writes that “building up a vocabulary for my experience was empowering”.
This has been my experience too. Finding out that I am autistic (and an ADHDer) has been completely life changing. Instead of internalising my inability to do what other people do with ease as a personal failing, I have accepted that I am different. My diagnoses have also enabled me to seek reasonable adjustments at work. This is why Oxfordshire’s 18-year waiting time for an autism assessment is so tragic: it will prevent people gaining support when they need it. But more significantly, it will prevent people from finding out who they are.
Neil’s YouTube channel about autism and his autistic experiences is called Autistic Not Alien. He was recently interviewed by the BBC about the channel.
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