International Autism Awareness Day 2019

So INTERNATIONAL AUTISM AWARENESS DAY was yesterday. A great thing. Like all those “things” that need more awareness-raising built around them that aim to bring about a better social awareness and evolution, this day is an imperative.

Many of us now know that the system around us, built over countless decades, is faulty, at best. For many of us on its margins, and even a substantial number of those who’ve benefitted directly from it, have become increasingly aware that our capital-based system – and its many component systems – are a long way towards being entirely broken.

It’s all and every part of the system that needs realigning, not just the big global urgencies. There are so many sub-systems we need to examine and turn around towards more equitable futures and wider-reaching goodness – not to mention others needing to be entirely replaced with evidence-based (including the lived experience of many individuals), findings of why they do not work in the 21st Century.

International Autism Awareness Day, like so many other disability awareness days, is a celebration of diversity, in this instance nuerodiversity, that brings about more awareness of a much-misunderstood biological condition (from high support needs through to higher functioning – with needs none-the-less).

From my research over the past year, all told it is now known that Autism Spectrum Condition (ASC) affects approximately 235,000 people in Australia across every ethnicity and culture. That's about 1 in 97 people (however, this number seems to differ between agencies – but only by about 15 counts). These numbers are up considerably (especially higher functioning), from 2004, when it was more like only 1 in 175 people believed to live with an ASC.

The key reason for this increase is because there’s now an increased awareness of the condition and its acute and extended complexities. Each individual’s diagnosis also has a diverse range of differences that accompany their lived experience with the condition. These are based on: gender, sexuality, background (childhood / cultural environment) and whether or not they present with comorbidity - other symptoms and conditions that can hide ASC in those who are higher functioning.

A further 15 years of research into ASC, coupled with the momentum of others being diagnosed in adulthood (often with a history filled with suicidality / attempts, due to their undiagnosed autism and/or ADHD), coming forward and attempting to communicate the vast difficulties (read: disabling factors) of living with such neurodiversity, is the main reason for the growth in numbers. But as with anything, the more knowledge is gained about something once considered so different, wrong, strange etc, the more we tend to investigate, find connections in our own lives or those close to us and the more we become outspoken and less likely to remain silent, riding our symptoms solo saddle.

Autism is NOT caused by bloody vaccines! This has recently been proven by various renowned medical and autism researchers - (but that’s another blog’s worth). There's a long history of autism occurring in people. Much study has been done on its recording pre-vaccine era, through deciphering stories (in many languages and cultures), that point to someone within the community (legendary or not), as living with the unique traits of autism. Even when it is not so obvious at first sight. This is not to mention how many people living with ASC/ADHD were once locked away as children – many for their entire lives – in asylums, experiments for medical research. This is especially true if the person was from a lower class, not educated stock, and/or was sexually “perverted” (homosexual), also physically disabled, black or female.

Many recordings, and the more recent stepped-up research of them, point to many male well-known people as having lived / are living with higher functioning autism and/or ADHD: Wolfgang Mozart – Composer, Steve Jobs – CEO of Apple, Michelangelo – Sculptor, Painter, Architect, Alonso Clemons – sculptor, Robin Williams – actor, comedian, Alfred Kinsey – Sexologist & Biologist, Anthony Hopkins – actor, Stanley Kubrick – Film Director, Isaac Newton – Mathematician, Astronomer, & Physicist, Nikola Tesla – Inventor, David Byrne – singer song writer, Andy Warhol – Artist, Ludwig Wittgenstein – Philosopher, Dan Aykroyd – Comedic Actor, Hans Christian Andersen – Children’s Author, Tim Burton – Movie Director, Abraham Lincoln – renowned American President, Charles Darwin – Naturalist, Geologist, and Biologist and many others.

Thankfully, a lot more research has also been done on the number of famous women:

Temple Grandin – Animal Scientist & Writer, Barbara McClintock – Scientist and Cytogeneticist, Katherine Johnson – rocket scientist & engineer, Hannah Gadsby - Australian comedienne, writer, Mary Shelley – writer, Susan Boyle – Singer, Emily Dickinson – Poet, Courtney Love – singer, musician, Lucile Ball – actress & comedienne, Daryl Hannah – Actress & Environmental Activist, Francis Farmer – Hollywood actress 1940’s.

Most of these people were born into wealth and/or very well educated families and, thankfully for all of us, were surrounded by considerable support – though this is not to say their road was / has been easy, especially considering the diagnosis is relatively new in terms of identifying it and its complexities. Others in this list were not born into easy situations, however, once they found fame and fortune, they were able to seek out and pay for support systems around them. (I have done a lot of my own research on this).

About 30% of people living with ASC also live with ADHD, making their higher functioning autism more impacted, pronounced, harder to live with and usually harder to “hide” and struggle with in isaolation all the time.

There is also a difference between ADD and ADHD. The former refers to people with attention deficit disorder (significant daydreaming, meandering thoughts, chronic procrastination, forgetting train of thought – a little like Alzheimer's). It is a less invasive, impairing form than ADHD, which also adds to these traits a hyperactivity of bombarding thoughts (often analytical in nature), creating horrendous anxiety attacks. ADHD also often describes an excess of mental and physical energy that can be extremely difficult to make sense of, especially when situations around the individual ask for their all, let alone break out of. This can last hours or even days and is exhausting.

And to counter a still sustained belief that people living with ADHD (and autism for that matter), are stupid, aggressive, volatile, always angry or severely lack empathy... In fact, it is very much often the opposite. We are often very smart, very empathetic (though often it needs to be intllectualized first), caring and, in the right circumstances, can be spontaneously very articulate. ASC and ADHD are what I live with. I also live with acute ComplexPTSD (that is, severe trauma experienced over a prolonged time frame).

Living with any of these conditions in 'a' life is very bloody difficult to navigate 'the' life around us and usually the people who are enduring the 'road less traveled' (trying to do all they can to manage and understand their condition), are doing so because they want to live and live a quality life and one that doesn't fall into ruin and, worse, perpetration of the same degree of abuse, dismissal and side-lining done to them.

And yes, there are degrees of each of these conditions (let alone experiencing them all together) and each person, and the situations they stem from, are completely different – no two people with any of these conditions present entirely the same. The autism spectrum, as with ADHD, is a very diverse one. So there is zero point in comparing one person's experiences against another. Or your own against another's for that matter.

Every day we see and hear about people who are obviously traumatized (so many are) or living with a condition they should surely have diagnosed and treated but continue to refuse it (nothing’s wrong with me – it’s others who are the problem!), bury, swallow, suppress their pain and confusion and instead let their fears, shame and self-loathing slowly sculpt a lethal hateful persona that fears, buries and oppresses others in need.

Please, can I ask that we all take time out to love, support and congratulate those around us who are honest about their struggles, who are choosing the harder, self-reflecting and wider community betterment road in their struggle and undying quest to change hatred and ignorance into something altogether more socially evolved? Even as they are living with considerable conditions that put obstacles in their way on a daily basis, there are many who need more understanding and, well, some love and encouragement.

More reading:

The Complete Guide to Asperger’s Syndrome by Tony Attwood

Driven to Distraction: Reocognising and Coping with Attention Deficit Disorder by Edward M. Hallowell M.D & John J. Ratey M.D

The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk

Healing Trauma: A Pioneering Program for Restoring the Wisdom of Your Body by Peter Levine