Waxing philosophical on autism

An illustrated version of this article appears in issue 3 of Save our Souls Magazine.

I am one of the thousands in the UK with a suspected autism spectrum disorder who is being affected by what the National Autistic Society calls the autism diagnosis crisis. In 2013, at age 19, I was assessed by an NHS psychiatrist who decided that it was likely I have Asperger’s syndrome, a “high-functioning” form of autism.

Astonishingly, he explained that due to cuts in mental health funding, the Clinical Commissioning Group was funding only one expert to assess adults with suspected learning disabilities for the entire region (Yorkshire and the Humber, where the average wait for assessments is 84 weeks).

I struggled with my disability from infancy, and though I was fortunate that my mum worked as an art therapist with disabled children, my needs and difficulties were never properly assessed, or taken seriously, by the various NHS, education and social care professionals I was involved with.

I suffered with mental health problems from age 10 and could never adapt to school, leaving at 15. While my peers were going to university, I spent my late teens in and out of the emergency ward in a cycle of psychiatric crisis.

The sensory overload of a brightly lit, overcrowded, noisy A&E is a nightmarish torture for an autistic person. I sat and waited for hours at a time, only to be sent away with no concerns for my safety, with the promise of phone calls which sometimes never came as my only source of treatment.

When I did receive hospital treatment I had to sleep overnight, on the floor of a waiting room due to the lack of beds, just for half an hour with the crisis team. The follow-up from the Community Mental Health Team was non-existent. I got the most comfort from strawberry jam and butter on white toast and coffee brought by an auxiliary nurse in the morning.

My mum accompanied me, but I can only despair for those navigating this broken system alone. I can’t fault the compassion of the frontline staff, but how can those suffering with mental health conditions recover if they are forced to fall back on an NHS pushed to such a chaotic breaking point? For me this caused a harmful and endangering vicious cycle.

Without an autism diagnosis I have been denied not just care, though, but validation. I have felt much like Schrödinger’s cat, though not suspended in space time between life and death, but in a limbo state of demoralising insecurity and self-doubt.

This was partially lifted in April 2016, when at 23 I was diagnosed with Tourette’s syndrome, a condition frequently co-existing with autism. This explained my mood swings, obsessive-compulsive disorder and epilepsy-like tics that made me socially withdrawn.

The neurologist commented: “Why do we need the questionnaires and interviews? It’s obvious to me you have Asperger’s.” This caused me an epiphany: why do autistic people require their condition to be “diagnosed” in the first place?

Autism is associated with “savant” phenomena, where developmentally disabled people excel in fields like mathematics, computing, music and art. Autism also relates with the severe depression I have experienced.

But to what extent is this caused by dehumanising political choices: like austerity that leaves autistic people deprived of special educational needs, languishing on waiting lists, and having their disability benefits cut or withdrawn under the cruel and degrading regime of “fit for work” assessments?

The advocacy group Autism Europe reported that only 15% of autistic people in England are in full-time employment, a third have no job or benefits, while 63% lack any support for mental health or independent living.

My social isolation has hardly been improved after a box-ticking exercise by an unqualified “expert” working for the hideous Atos Healthcare, which the DWP used to deny my claim for Personal Independence Payments and reduce my assistance to nothing.

My conclusion is that though my autistic tendencies may be due to Asperger’s, they could easily be due to the trauma of suffering with Tourette’s without support, and then being locked in the box of uncertainty while being affected by political decisions damaging the well-being of disabled and mentally ill people across the UK. Whether or not I do have an ASD, all of this has only served to negatively reinforce my symptoms.

As a boy I related to Vincent van Gogh when he wrote “I wish they would only take me as I am.” But today I accept myself and I speak out for those like me to be accepted and supported for who they are; rather being their individual difference being categorised as a “disorder” within an unaccommodating and neglectful society. And on a positive note, without obstacles for the autistic savants I am certain we would all benefit.