Guest post: Autism in adults, and why you should respect us

Hey all,

Today I am going to turn my blog over to my partner, Samantha Davies, who has more than a few things to say about disability and mental illness, and the way it is regarded by our society. Sam is 28, and has high functioning Autism and Bipolar Disorder.

As librarians, all of us have had clients with physical and mental disabilities come through our library, whether we realise it our not. Some are obvious (like my wheelchair), but some are much more hidden. It might be the girl who never looks you in the eye (only at your left ear), or the man who takes a few too many sick days off work due to anxiety, or the child who screams his way through Story Time no matter how hard his parents try to shush him. Disability in libraries needs to not only be acknowledged  but catered for, and respected.

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Living with autism is a tricky business. People really only see two kinds, the ‘incurable who can’t speak with major behavioural issues’ and the ‘Aspergers Syndrome’ kind. But most of all they only see children. In the media, Autism is only ever seen as something children have. Where-as some of us have it right into adulthood. Occasionally we’ll see books by a bevy of Autistic Adults that come round, but mostly they are higher functioning than people like me.

I don’t know where I fall on the spectrum, and some days you’d think I was normal. Then I have vast dips in behavioural problems where I can’t go outside and I have panic attacks because of the regularity of a clock ticking. I can’t have radios turned on, or be near traffic. I have extremely intense sensory problems. At 28 most of my doctors said my issue would have faded by now, but they haven’t. Complete meltdowns are still a daily occurrence and I am medicated extremely heavily to maintain my stable behaviour, otherwise I plummet and things get seriously bad. Violence, days and days of no sleeping, screaming fits, on and on. Although I am intelligent I am completely unable to work because leaving the house is so stressfull I can only manage it once maybe twice a week without falling apart completely.

Any amount of stress and I collapse.

I was born in a generation before early intervention programs. At an early age I was institutionalised on multiple occasions and misdiagnosed with many other things, before at 15 somebody said ‘maybe she has Autism’.

However that is just an overview and there is a reason for it.
Every time the media puts a face on Autism, it’s nearly always about children, because I believe it’s seen as safe and encouraging. A child’s serious issues are seen as something from childhood some that can go away as they age. But they don’t. Every person with severe Autism is stuck with that for life.

And you never hear our stories, sure we’ll get to hear about a few success stories, namely Temple Grandin and they are nearly always savants of some kind because that’s interesting and seen as awe inspiring.

But you never see our troubles, our fights. As with all adults with mental illness, we are put out of sight and out of mind. And if we do take part in society people think us ‘weird’ or ‘not quite there’. Every social event I go to people end up saying things like ‘oh she’s nice, but she’s not really all there is she?’ or ‘Sam was interesting hmm?’ or even worse, outright rejection and insults.

In the neurotypical world, the ability to function and take part is taken for granted. The ability to drive, work, ride the bus, and even talk and socialise are unrealised privileges of the sane.

Adults with disabilities of all kinds are rarely touched upon, and nearly always we’re used in some sort of inspirational porn. And frankly, it’s just wrong. We never hear the stories of everyday people with issues and our needs are never heard and even less are they met.

In Western Australia, we have a chronic shortage of services for people with mental illness, and medicare limits you to just 10 appointments a year with a private psychologist or psychiatrist. Down from a maximum of 18 in 2010. This is woefully inadequate for most people.

The public mental health system, is at best underfunded and in dire need of an overhaul. Hopefully NDIS goes through, but so far WA seems to want nothing more than to rest on it’s mining money, spending billions on new infrastructure while failing to improve our mental health system.

People with disabilities suffer mainly from not only chronic under representation  but more importantly a complete lack of respect from most of society. Recently my partner (who also has a disability) was told her grandparents were worried if they knew what she was getting into when it came to being with me, questioning whether I could be trusted as a partner and a human being.

Partly that is parental protectiveness, but we get this from other areas, such as not getting jobs because we’re too much of a risk, or being told we can’t take part in certain social events because we’ll be disruptive or we won’t fit in. People with disabilities are never thought of or considered or viewed as whole human beings.

Mental illness is a stigma, it’s a stamp on your head that most of the world believes says ‘deficient’. Well I believe that stamp says ‘diverse’, ‘interesting’, ‘different’ and ‘important’. Because people with disabilities are important, our goals and lives are just as full and interesting as those of neurotypicals, and most importantly, just as valid.

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