In the run up to the Brexit referendum vote, as a relatively recently diagnosed autistic adult, I’ll admit I was scared.
I was right to be afraid. The country had descended into divisive and hateful rhetoric perpetuated by factions of a Conservative leadership. The same rhetoric that had been used by people in power to generate a genocidal movement against the Jews, not so very long ago, was being resurrected to further political interests, irrespective of the human cost. In the same breath that international courts of justice were still convicting people of war crimes committed during World War II, atrocities of war and hatred were being perpetrated against Syria and the victims who had fought all odds to escape the hell inflicted upon them.
History shows that in a society which seeks to implement political austerity the areas which will suffer are the vulnerable, the poor, the arts, economic growth, international relations, scientific and social research. I have witnessed that when communities are in pain due to very real economic and social struggle, it is easy for the powers which have inflicted these wounds to divert justifiable anger away from themselves to other sources of blame. In the case of Brexit, it was European immigration, and since the vote, European citizens living, working and successfully contributing to the U.K. economy have become innocent targets for exponentially increasing hate crime.
As a disabled adult I understand the effects of this kind of campaign of austerity and nationalism can be far-reaching and reverberate through many generations.
Steve Silberman, author of “Neurotribes” found that during the run up to World War II, Austrian psychologist Hans Asperger was researching a condition which he came to name “autism,” but laterally came to be known as “Asperger’s” (a term no longer used in the DSM V). In the vacuum of hatred and demonization of the disabled tearing through Nazi Germany ahead of the war, Asperger apparently focused his findings around the capabilities of his young charges to protect them from the gas chambers. The research focused around boys but did not claim girls were unaffected, simply that they had not been encountered during Asperger’s research. In the maelstrom of the last days of the war, this research became buried and then for decades lost in Europe by a society for whom the wounds of the war were still open and weeping. It was not until the 1980s that Asperger’s work was recovered and translated from German by a British psychologist, Lorna Wing, and the criteria for diagnosis broadened and opened up.
The result of these lost years of potential advancement in understanding is a critical crisis in the autism community. Research still remarkably focused around curing children and a diagnosis criteria that is still dramatically biased towards boys has left girls and adults floundering without support and minors often at the mercy of archaic curative measures.
As increased understanding and awareness open up, society has seen an increase in recognition and diagnosis; however, continuing proliferation of stereotypes and misinformation mislabel this increase an “epidemic” which needs to be tackled rather than an opportunity to embrace and improve people’s lives.
In what the United Nations in 2015 called a “human rights crisis,” the focus on cure rather than acceptance and awareness resulted in a community which Silberman described as “one of the largest disenfranchised minorities in the world.” With an estimated 85% unemployment rate, a mortality rate of sometimes 30 years less than the general population, largely driven by suicide and a prevalence towards addiction of vulnerable adults who have never been granted the acceptance in society to make the connections required for a healthy, enabled and satisfying life, it is vitally important that steps to integrate and connect this group with society are made.
In my own life I’m almost grateful for the late diagnosis which allowed me to grow up unhindered by a label society did not understand. While having faced major difficulties in youth and young adulthood, which I now understand were as a result of neurological differences and challenges, I recognize I might not have had the opportunities to grow and experience the things which I have with an earlier diagnosis. That being said, by no means am I ashamed of my autism.
Growing up with a persistent sense of “otherness” and lack of belonging, I was continuously looking for somewhere to fit. The understanding I now have, even if it involves becoming a member of a group who corporately do not conform, is a relief and the answer to a lifelong puzzle. However, stigma and stereotypes still abound, and I feel the constant need to explain myself. I have friends who know more about my neurological processes and reasons for doing, saying or being unable to say things than they know about my preferences in pizza (Franco Manca, if you are buying), comedy, movies, art, literature or music. I don’t want to live in a world where I am forced to persistently second guess and justify myself. I am far more interested in finding out what your superpower of choice would be. Mine, for the record, is mind reading.
I have no desire to spend my life talking about autism, but in recent years the responses I have received, ranging from the utterly dehumanizing, “You can’t be ‘an’ autistic, you’ve been lied to, that is a lie,” “You can’t be autistic because, well, you’re quite funny, aren’t you,” to a former friend who took offense at my having to change plans due to an enablement support session and complained I was letting them down to spend the day being “differently-abled” and a “spastic,” mean I recognize the responsibility I have to work towards reducing stigma and stereotypes. I’m neither mentally challenged nor a savant genius, but I was once told I could not be autistic because a report showed my IQ was too high for me to be “that stupid.”
I recognize the responsibility that as someone classified as a “high-functioning” adult with a relatively regular life, not hindered by the speech and severe neurological difficulties of others like me, I have to speak out and to show the world what autism really is. For a long time this year and last I went through a period of feeling very lost and broken and that not fitting must somehow be my fault. I want to work towards an environment of that not being the case for anyone else.
I realized as I sat in North London watching the result of the EU referendum come in back in June that for a very long time I had been cosseted from what was going on outside of the city by a bubble of cosmopolitanism, a bipartisan result of the liberalism that shrouds the capital. I knew membership of the EU was vitally important to my life and that of my tribe because of the human rights, workers protections and research money enshrined within its membership. The U.K. is already the first country in the world to be investigated by the UN for its treatment of disabled citizens. Given my situation, three months on from that vote I am still very, very scared.
Considering the hidden history of autism and the current world political climate, it is now more important than ever before for those of us on the spectrum to make our voices heard, to advocate and tell the world our complex, multi-faceted and very human stories. It’s our responsibility to fight for every child and adult who struggled before us and for the rights of all those to come, so never again may any person on any spectrum of disability be dehumanized, tortured with invasive therapies, murdered or just ghosted outside of society to fade and disappear.
A common symbol of autism awareness is the missing puzzle piece, used to describe what people believe is a missing part of an autistic person that needs to be found. I refute that. It is not an autistic person who has something missing in them but society which has a missing piece that is the space required for autism to fit and for the neurodiverse to be enabled to flourish.
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