Poised between life and death – too old to start again, not old enough for the pastures, I realise that I am close to the finish line with little evidence of my life or that I even existed. The sadness for me is overwhelming. What I craved and still do crave, was earning a living productively in a creative career. It was life or death to me and that has not changed.
It is difficult to explain the void that UNdiagnosed Asperger’s has bequeathed me. Disconnection from people is probably the cruellest aspect. I harp on that it’s not autism itself, but living a life with an alternative mindset. This different wiring set me apart from most around me and created the void.
Looking back, I am seeing the differences played out, like watching scenes from a film and I recognise the eccentric child with mystifying behaviours, awkward social skills, on the edge of peer groups, waiting her turn to be included.
The film rolls on and I watch that little girl struggling with herself, waking in the night to feelings of doom and death. Days lived in dread. But there was no understanding of reasons, just unidentifiable issues and a longing which remains to this day.
As I type this, I truly wonder at a society that contributed to that misery. Yes, I get that ‘they didn’t know back then’, but they do now. Whilst funding is being put into education of autistic children (which it must), I belong to a forgotten group. Autistic adults who grew up undiagnosed and even if they were diagnosed, had no understanding or support via education or family.
“So what is it I want now?” I ask myself?
Then I had a dream. I’m on a stage speaking to an audience with a caring, sensitive Prime Minister, MPs and councillors, teachers and medical staff, all listening – yeah, right! So I tell them this:
We are a group of intelligent humans who are greatly misunderstood by society. Stigmatised by an outdated mythology.
As a fully trained teacher of both children and adults, I am well equipped to speak out and explain who we are and what we have to offer. But, and there is a huge BUT for me, I am physically disabled by Ehlers-Danlos Hypermobility Syndrome, as are many Autistic people, which greatly impedes life.
I also live with the aftermath of years of UNdiagnosed masked autism, where society and hypersensitivity to the environment implanted crippling anxiety and depression from childhood.
However, I know, with support and funding, both men and women on the spectrum could use their brilliant minds and creativity to contribute to the world. Indeed, Autistic people have already contributed for thousands of years, but this history has been buried.
Those who are caught in the welfare system or dependant on relatives are trapped, living in fear of losing fragile security. Not that I class Autism as a disability – it is not (see other blogs.) It is just another type of human neurology and we are an important link in the chain of evolution. Modern society is the problem in that it doesn’t like difference when in the past, difference was called by other names i.e. shaman, alchemist, witch, eccentric, inventor, maverick, genius, quirky, professor, innovative, artist, etc.
Our society, the system, does not cater for us. Some of those who are physically able, do manage in the world of work, although I’m learning this is often achieved at a cost. The price is heavy masking which disguises true potential and impacts mental health.
Huge numbers of us who have ended up ‘disabled’ by society’s judgement or comorbid health conditions, are wasted. Our potential shunned and I can’t help feeling that governments and employers have missed a trick and lost a great opportunity.
Autistic people have a particular capacity to hyperfocus on their interests, it is their raison d’être which should be encouraged from day one in childhood as this is where their employment and future will thrive. Not by being forced into areas of learning or work that they cannot cope with. Autistic people excel in their own areas of expertise, not with society’s enforced ideas.
The autistic child that pulls their toys to bits, is a potential inventor or engineer. The one that crayons on walls, an artist or designer. Those that love stories – authors and poets. Parents and teachers must encourage the ‘special interests’ of autistic children. Often regarded by neurotypicals as ‘indulgence’ or ‘they need a proper job’, it is actually the only way forward for an autistic mind. And what a mind – give it free rein and you are encouraging brilliance, independence and security along with self-worth and a future, not to mention longed for belonging and happiness.
Security via work and learning, as I see it, comes in two forms – employment or self-employment.
Autistic people struggle with workplace environments unless it is setup to meet their needs and support them. Microsoft are on the ball with this one. Actively employing Autistics who show IT skills when young. Gaming companies is another route.
Creative talent is huge in the world of autism. Many are prolific writers, artists, musicians, poets, actors, comedians and much more. It is this group that get left behind because there is not enough training nor encouragement within the education system to enable us in pursuing these employment avenues. And then there’s self-employment.
For me, in my Community Dance career, before EDS disability set in, I lived on a knife edge of poverty because my struggle with hypersensitivity and society plus failing health meant I could not put in the hours needed to sustain a long-term career.
Without the knowledge of my Autism I was unable to function in a close relationship, as is common. With no support or sharing of resources this meant I was alone and struggling. I feel cheated by this and know that in a secure, supportive setting, with enough to live on, I could have been productive and so much more when I was able. Sadly, my health-boat has sailed.
I believe, that tailored education, supportive employment or ongoing financial support for Autistics and disabled people, most of whom crave to be using their brains and skills, is the only way we can move forward, but it has to be on our terms. We would feel supported, have enough to live on and I know our ‘special interests’ would thrive to produce income. Thus, we would be contributing to society. As long as there is no pressure or bullying and we are given autonomy to be ourselves. It would be a see-saw journey due to fluctuating health, but knowing we have back-up available during unproductive times can only be the best humane path for those who need it.
Please recognise our intelligence and potential. See us as fellow humans. Talk to us, ask us, include us and most importantly, listen to us.
I wake from the dream and wish…