Month: September 2018

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Musings on Autism and Autistic as terms

Autism, Autistic, the Autism Spectrum – I have been thinking about how useful the word is, like other words that people hang different meanings from.

According to the information in Wikipedia, a Swiss psychiatrist came up with the word in the early 20th century and it was used in the context of Schizoprhenia. This included “autistic withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance”.

This is not what I understand the word Autism to mean, because I don’t think autistic people are confused about reality. We may get absorbed in a sensory experience, but it isn’t hallucination or delusion.

So, if the word we’re using to describe ourselves doesn’t come from a context that relates to what Autistic people are like, is it a useful word?

But is there a problem with a definition of Autism? I feel a tension between all the things expressed as “deficits” which can be traced back to things that are actually considered positive. And Autism suggests self-absorbed, when most autistic people I am familiar with are very engaged with the world.

In fact, are the “deficits” just not developing in the same way or speed?

It all comes back to whether it’s perceived as engagement in the world that makes you fit in at the right stages, and “functioning” defined in narrow terms as “being conventionally successful”. When it comes to “success”, what is the measure?

Take communication – the autistic communication style is naturally direct, truthful and often comprehensive. When you come up against the way most people behave, this ends up being rude, hurtful and “oversharing”, say. People admire those who expose awful acts and reveal the truth, but generally speaking, typical people prefer to be lied to to have their feelings protected.

I end up being mute in many situations because of the negative reaction to unfiltered truth which can be seen as “depressing”. Truth is often depressing, that’s just the way it is. So my communication “deficit” came about as a reaction to a world that doesn’t want honesty most of the time, and I have to identify very specific cases where I can communicate in my natural style.

How about intense focus and interests? People adore successful creative people who have an intense, almost obsessive interest in one thing. Yet you look at the diagnostic criteria and see this described as “abnormal”. If the person making the judgement doesn’t see the interest as “useful” then it’s a “problem”.

So back to “Autism”. Am I a person with “autism”, where autism is this “difficulty” I “manage”. Or am I Autistic with actually quite interesting abilities that get ignored or misunderstood.

Is Autism actually fine as a term, but it simply has to be claimed by actually autistic people? Can we say the “self” part is “self-aware” and not “self-ish”. If I say the apparent self-absorption is related to the response the world has to us, have I reversed the original intent of the word?

I’m not sure – “Autism” still seems to represent a result of being different, rather than describing what we are, and what our abilities are.

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Spectrum Women – an attempt at a review

I finished reading through the book this morning and wanted to put some thoughts down. This may not end up seeming like a typical review, as there is so much in the book, I feel I’d like to say something about all of it, and I’ve got the autistic bottom-up tendency that would probably result in me summarizing the points in each chapter. In that case, the reader may as well just go and buy the book.

Which you should. Look it up on Amazon, or get it direct from JKP.

So in the interest of getting something written, here are some impressions of mine, although I had visions of some “perfect” review that could express my detailed reactions…

Starting off, Barb Cook’s story resonated for me because, unfortunately, I have a history with quite a number of dark periods in my life. As someone who self-medicates for anxiety, fortunately, limited by my capacity, I understand where her story of addiction is coming from.

I was also impressed by her honesty in describing how her innocence in social situations led to her being used by men. I’m also familiar with low self-esteem leading one to accept the wrong people just due to loneliness, and it’s a really self-negating space to be in.

I have strong feminist leanings and think now that autistic women can end up with the worst deal because they are born into a gender that is already at a disadvantage, even after decades of feminist campaigning. Autistic women end up with the added difficulty of often not learning self-protection and being alienated from NT women at the same time.

This connects me to Liane Willey’s chapter on safety. There is so much in the book that young autistic girls need to read to avoid abusive relationships and being manipulated or harassed.

At the risk of getting too negative, I have to get on to the positive aspects with respect to forming a better sense of identity, self-esteem and enjoyment of life.

Christine Jenkins and Renata Jurkevythz reminded me that autistic intense interests are very important for recharging. As a single parent, I have often unwittingly forgotten to reserve time for interests that I have historically immersed myself in. It can be the case that one gets so worn down from simply trying to get through the day, it can be an effort just to remember you have things you love that will make you feel better.

This is linked to self-care, which Becca Lory, Catriona Stewart and Kate Ross write about.

I’m flicking back through the book to remind myself what is in the chapters and had forgotten what Catriona wrote about “identity care”. Also assertiveness. I’ve had trouble with both, having periods where I’ve convinced myself to deny my own interests due to wanting to “be like the other grown-ups”. In fact, asserting your identity is as important as being able to assert you need a bit of a break from sensory overload or accommodations in your work environment.

This is what Becca talks about as well – have you lost track of yourself?

I appreciated Kate Ross’ basic discussion of hygiene, although the female aspects of it obviously don’t apply. I’ll continue this paragraph after I’ve had a shower… Right, bacterial colonies have been evicted and I have fresh undergarments.  I realised it was helpful to have in mind a detailed explanation of what is actually making you smell bad. I know my mind wants proof of why you should do things rather than people just saying it’s “obvious”. Although sometimes hygiene is just forgotten when one is having mood problems or just generally distracted by something more interesting like attempting to write book reviews.

Kate’s section on executive function is rather handy too. I’ve had managers during my working life scratching their head about why I needed so much supervision or took much longer than expected to do something. And the last line of that section is a really good one to remember:

I’m not lazy; I have executive function and task inertia difficulties. How can you help me?

It’s both a good thing to repeat for your own self-esteem, and a reminder that often people are glad to help, and you are only making more work for yourself by struggling quietly until deadlines loom and things become more stressful.

This seems like a bit of a meandering “review”, and I’d like to mention all the contributors but you can find that out by buying the book immediately. I hope that autistic men are not discouraged by the title and think it’s just for women. Much of the book is about experiences specific for women, but this is great for learning about the problems women face, and that in many respects there isn’t a huge distance between the way autistic men and women think. Autistic men are often less masculine and somewhat alienated from typical men (I think, I’m one of them), and I’ve realised recently that Autistic women can end up feeling the same way. A lot of us are inhabiting this non-binary space somewhat detached from our physical gender, so how far are “women” in a separate tribe?

Currently it is very important to have a book reaching out to autistic women, who have a hard time getting diagnosed, are often told that the can’t possibly be autistic and have to fight for months or years to get confirmation they need. For those who are unlucky enough to be unable to find a good assessor and can’t afford to pay for assessment will at least have a very good reference to understand themselves and where to find people that understand them. Thanks to the internet it’s possible to say hi to everyone appearing in the book and get to know them over time through their writing, videos, and exchanging comments on Facebook or Twitter etc.

Thinking more philosophically, I am wondering about a further opportunity to subvert gender stereotypes further in the future, because although the book says “Spectrum Women” I see a lot of what is in the book as relevant to “Spectrum Person”. It might be interesting to have a book exploring the fluid sense of gender among autistic people, or it might already exist and I haven’t found it. Well, nearly – this looks promising, yet I’m thinking on more philosophical lines rather than sexuality, which to me often seems like a barrier to close friendships between the sexes, but I’m going off topic.

Yet it’s just an example of how thought-provoking this book is, especially if you haven’t read that many books by autistic people. It has inspired me to find more after having a period after diagnosis where I have struggled to connect with any other autistic people or experiences.