Monday, April 25, 2016

Five Ways to A Brighter Future for Autistic People

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today, British autistic filmmaker and author Carly Jones outlines her "Top five understandings previous Autistic generations did not have, that the next Autistic generation must have as standard."

Carly Jones

Carly and her family
[image: A laughing white woman with long dark hair,
lying on a striped blanket with her three children.]
 1) See autism as a real disability

Disability is not a dirty word, though it feels that way to some -- we are all too often encouraged to see disability as “less than” “inferior,” or “disadvantaged.” I see disability as someone having a different experience of the world than is "typical."

Although Theory of Mind (lack of pre-installed knowledge that other people's thoughts, wants, and agendas may differ from one's own) is noted as a neurological condition rather than a sense, I often think it would be better viewed as a sense. And If we think of humans as having six senses rather than five, and consider that Autistic people often struggle with Theory of Mind, that is one way to see how Autism is a disability -- and also why that is OK. 

Theory of Mind is so often taken for granted, but it really is the foundation of how most humans interact with and perceive the world. Without it, our experiences of the world can be very isolated, and vulnerable -- with all other senses are supercharged in order to compensate: our hearing, sight, touch, smell, and taste almost in a heightened dance to explore and seek out -- or indeed deter -- from others' experiences.

This Theory of Mind can be taught, if it doesn't come naturally; you can learn to second-guess a situation sufficiently, and navigate life with less vulnerability. But differences in having a Theory of Mind are one reason why all autism diagnoses, even “mild” ones, are not mild at all. While the ability to talk is certainly not a golden ticket to being able to communicate your needs, the ability to talk does give the impression you require less understanding and support which in itself is dangerously misguided -- especially when your disability is not an obvious one.

2) Provide equal diagnosis access, regardless of gender

An Autism diagnosis should not be acquire through a lottery. But given various Autism clinicians' perceptions, experiences, and stereotypes plus the variety of available diagnostic tests/tools, and different countries' Autism knowledge bases, a fair and equal diagnosis experience is unlikely -- unless the Autistic person themselves has taken enough time to research the tool, doctor, and setting that best comprehends their unique set of Autism traits.

Gender stereotypes can also interfere with the process of diagnosis. As Autism is typically seen as a male condition, males are the most likely to be diagnosed, followed by females who have more typically "male" autistic traits. Females who present with more characteristically feminine autistic traits are often overlooked, and autistic males who do not present with typically male traits are in even more of a grey area -- in many cases sharing the experiences of women and girls who grew up with little to no understanding and support.

My research paper Gender Fluidity Prism in Diagnosis of Autism Spectrum Disorders, which discusses matters of gender complexity in autistic people, had incredible feedback: showing we need more gender-neutral diagnostic tools, and -- more importantly -- better training of clinicians to use these diagnostic tools in meaningful fashions.

3) Enforce equality in education, exams, and employment

It is incredible, almost unthinkable, that only 15% of Autistic adults are in full time paid employment. Fixing this situation is not a simple as pleading with employers to see the "Autism Advantage," and it starts much earlier than the interview room, or the rejection letters. Increasing autistic employability starts with addressing inequality in educational settings and exams. Ask yourself: If people knew you had a high IQ and a special interest/expertise, but you had no way of showing your abilities in an exam situation, would you be considered a respected professional -- or a eccentric obsessive?

I have been researching the UK General Certificate of Secondary Education (GCSE) papers, and find  the questions loaded with theory-of-mind-based exam questions. In 2014, for example, an Autistic youth's ability to get an English "Pass" would be dependent on reading a newspaper article about a tree, then describing in essay OTHER PEOPLE'S THOUGHTS about said tree? In my opinion, this is unethical – it does not work, it is a massive oversight, and is detrimental to the rights of Autistic students. I am in process of translating these questions to be more Autistic-friendly -- to present an alternative paper for those who struggle to with Theory of Mind.

4) Fight for visible, ethical media and press portrayal

We need more balanced inclusion of Autistic people in mainstream settings: TV, Radio, the Arts, on professional boards and capacities. We need more portrayals about us that include us -- and not just on disability or diverse programming or days [or in April -Ed.].

My rule of thumb and advice for anyone who writes, constructs, or participates in media is that when the word 'Autism' or 'Autistic' is used in an article, script, or auto cue -- think about how it would play if you changed that word to 'Black, 'Asian,' 'Gay, 'Lesbian,' or 'female.' If it suddenly sounds cruel or disappointing -- it was already cruel and disappointing!

5) Advocate for better training, and awareness of front line services 

The mortality rate and lifespan for those on the Autistic spectrum is much lower than in the non-Autistic community: the mean age of life expectancy is 39 years of age. According to Autistica's research, those both with and without an “intellectual disability die younger, and Autistic people are NINE times more likely than the general population to take their own life."

Our front line services are a fundamental way to change and improve Autistic lifespan prospects. Paramedics and doctors need to be aware of a person's Autism straight away, in order to cater to their health needs. An Autistic person's symptoms may not be taken seriously due to their inability to ask for help, a monotone delivery of information to health professionals, or indeed the patient being hyposensitive to pain and therefore not appearing to be in need at all. My daughter was given a spoon of mild children paracetamol in hospital for a broken arm as she was not crying; I myself was told to go to school with my headache/tummy ache at 14 by my doctor/GP, only to have my appendix removed later the same day – we can hide our illnesses well, and often not intentionally!

We need to have police understand that their commends will be taken literally, that we may not be able to talk or communicate in a manner they expect, that eye contact -- or lack of it -- is us listening to them, and not being shifty. And importantly, when overwhelmed we will do whatever we need to make the bombardment of questions and communication stop -- even to the point of false confession.

Our helpline services need to know that, in the UK, we are nine times more likely to need them, but that 77% of Autistic people recently questioned said they would not be able to use a phone in times of a crisis. And the response time to emails and texts to helplines are is 4-12 hours compared to the 3 rings goal for telephone calls. The crisis points such as train stations and car parks only advertise the telephone numbers, not a text or email service. Thankfully, The National Autistic society and the Samaritans UK are eager to help change this.