Good afternoon and happy 2016 International Womens Day
everyone. This IWD I would like to say a few words about women on the autism
spectrum. I, like approx 1 - 3% of the population, am autistic. Like other
minorities, people on the autism spectrum are finding that we need to express our
identities and build understanding rather than going through life “passing” to
avoid unfair treatment.
I and others on the spectrum would like to change the way
people think about and talk about autism. I am not "afflicted by
autism" and I don't "battle autism" for the same reasons that I
am not afflicted by femaleness and I don't battle my ethnicity. I don’t “suffer
from autism”. I have however suffered from some people’s jealousies and
judgments towards me as a capable, articulate migrant woman who doesn’t conform
to various social expectations. These jealousies and judgments have contributed
to me being bullied and pressured to conform and dumb down in schools,
workplaces and even in some “progressive” groups. Discovering that I am on the
autism spectrum has enabled me to advocate for myself, use my skills and find
where I belong.
Being autistic is part of my identity and way of thinking. I
didn't get a degree or write a book or anything else "despite
autism", if anything, I achieved these things because of my autism (as
well as through having very positive encouraging immigrant parents and free
education under Gough Whitlam’s government).
Autism gives me a high IQ, strong maths skills and logical, analytical
thinking, but this isn’t the same for all autistics. Autism is about having
higher levels of sensitivities and an ever-present world of thought, and being
less inclined towards the world of social interaction. Our brains are wired
differently from birth. Many of us have high levels of specialisation in our
interests and abilities, with weaknesses in skills that most others would take
for granted. The areas of specialisation and weakness vary enormously between individuals,
that’s why autism is a spectrum. Most people have heard of autistic computer
geeks or savants with photographic memories. There are also autistic artists,
writers, actors, musicians, tradespersons, scientists and other professionals.
The level of over-sensitivity and differentness varies
enormously too. Whereas some of us can pick up social skills through studying
our more outgoing peers or reading self help books, others remain seemingly
locked in a private world and need intensive, individualised help to learn to
relate to people and achieve their potential. Some of these autistics are
highly gifted but sadly appropriate help is often lacking and their abilities
remain untapped. This can result in very challenging behaviour, high care needs
and unhappiness.
In recent years huge charities like Autism Speaks, backed up
by some well meaning parents and professionals, have highlighted pronounced
forms of autism, as a source of pity or “a tragedy”, in an effort to raise
funds for research and boost their own voice, at the expense of autistic
voices. These stigmatising depictions confuse and discourage many intelligent
adults, who suspect they are autistic, from seeking explanations for their
differentness. Thus statistics and perceptions on autism remain skewed towards the
pathologising disability model, where some 70% of autistics are said to be “low
functioning”. I know these statistics are wrong because I quite often meet very
capable like-minded adults who know very little about autism but seem to share
these traits – so they have never been counted in the autism statistics.
I find most official explanations of autism incomplete and
often downright denigrating. I ascribe to the “intense world theory” as the one
that best matches personal experience – autistics get too much sensory input
and need to focus inwards to make sense of the world and explore special
interests. This can make us appear as if we lack emotion or empathy when in
fact we are actually overwhelmed by what we pick up.
It is said that only one in four autistics is female. I and
others dispute these figures too. Girls with autism like to get along with
people and many aspire to helping professions such as teaching and medicine. We
learn fast that we need to pick up social skills to keep up with more chatty,
outgoing friends. We typically watch, analyse and copy other women and
sometimes study media figures or read up extensively on social matters. These
learned skills can mask the difficulties we have in dealing with a social world
where most women naturally think and feel differently than we do. Many autistic
women thus “pass as normal”, but lack the moral support or outlets to express our
natural feelings of differentness. Whereas boys, who are less inclined towards
the social world, are allowed to be loners and pursue their special interests,
girls are expected to be part of prolonged social interactions, keep up
appearances and conform to narrow feminine roles. Traditional feminine roles
are often counter-intuitive to autistic women, but sadly most autistic women
have no idea why they feel different and lack opportunities to break out of the
traditional mould. Rigid social expectations can set autistic women up for
lifelong unhappiness and mental health problems and deprive our whole society
of autistic women’s gifts and insights.
High functioning autism was unknown until I was much older.
I was lucky that I got to university and discovered the political scene,
feminist and anti-racist movements. This gave me the tools I needed to explore
and express a sense of differentness on some levels. Being able to think critically
about society has been a life saver. It has prevented me from becoming part of the
65% of autistics who have mental health issues and the 66% who are unemployed.
In an understanding and accepting world I think very few autistics would have mental
health problems and almost all would be employed. If our skills and insights
were valued by employers, if we were not held hostage to the current conformist,
controlling euphemism of “teamwork” and, instead, were welcomed into truly
diverse and accepting workplace teams, we would be indispensable. Autistics are
highly focused, self motivated and conscientious. We don’t waste time on
chitchat or become distracted if we are doing things we truly love. We are
loyal and honest and have a huge social conscience. We can often see patterns
or spot inaccuracies that others can’t easily see. Our unique thinking styles
drive innovation and make us individuals.
Growing up I had a different kind of brain that nobody
understood. In the bad old White
Australia days, before anti-discrimination laws had been dreamt of, I was
culturally and racially different, with no clearly defined ethnic group to
belong to. I had an autistic maths brain in the days when many people thought
this meant I didn’t have the right female hormones. I went to a rough
government school where I was inexplicably poor at sports (now known to be a
common autistic trait). This also caused me to be an overweight kid. Under the
circumstances there was no escaping schoolyard bullying. As an autistic I was
slow to respond to both the verbal and physical challenges of bullies. My high
abilities in class shamed and angered the rough types and I became a target for
kids who thought “wogs are supposed to be dumb.” They saw my shyness, weight
problems, physical slowness and ethnic background as a way to get at me.
None of this detracts from the fact that many kids were
extremely caring and friendly, and in fact liked and welcomed my differences,
even back on those bad old racist, sexist days. Those great friends stuck up for me and helped
make my school years happy in many ways. They were the friends who I learned a
lot from socially. When I have spoken out about discrimination in the past, often
some of these good people have been shocked and defended themselves. Nothing is
being said or implied about all, or even most, of the people I knew at school.
Bullies are a small minority but they cause a lot of damage.
People who get bullied either break down or grow up tough.
Being physically and socially slower to respond I wasn’t able to become tough
in the usual ways. I eventually developed my writing, public speaking and
campaigning abilities as my way of challenging many forms of social inequality
and prejudice. Writing and formal presentation is a natural forte for many
autistics. Without the fast moving dialogue and social input of an unplanned interaction,
we really shine and show our abilities, talking about our special interests in
a more planned setting.
I especially like attending meetings as the rules of who
speaks when, on what subject, and for how long, are taught and known. I find
this setting, rather than prolonged or boozy after-meeting socials, the best
way to get to know people. I have studied a lot of self help books and
practiced my conversation skills for decades but I will never be a social
butterfly. It is not my duty as a woman to compete socially or chitchat
endlessly. I go to socials but some artificial lighting and chaotic
environments quickly drain me. I don’t have the stamina for really late nights.
I am a natural leader and will speak up and advocate for
issues. I have also used my leadership and public speaking abilities to teach
other women campaigning skills. All those little social cues and
discouragements to make women passive and defer to male authority have been
water off a duck’s back – because of autism I haven’t been influenced by any of
this negative socialisation!
As an autistic, I have strong logic and staunch views which
are characteristic of good campaigners. I organise and run meetings, petitions
and protests, visit politicians and speak to newspapers. Although autistics are
meant to have social difficulties I have often organised social events for
single parents. I get on well in social settings where I know we all have
something in common and where we can get in depth into our topic. Despite false
negative stereotypes that autistics lack empathy, a lot of people confide in me
because of my affinity for in-depth one to one conversation. People I know in
the community appreciate my efforts and respect what I do, they don’t need me
to conform in order to get along with me.
Another way that I can enjoy social events is to gravitate
to the quieter part of the room and talk to the less extroverted people, the
non-English speakers or the older people in the room. Contrary to all the silly
social pressures, between 30 and 40 percent of the populations is naturally
introverted and we are meant to be this way. We are quite happy with each
other’s company. My face and cultural manner is my passport to meeting people
from different backgrounds. I enjoy inter-cultural exchange more than mainstream
conversation topics.
When I held down jobs in female dominated workplaces, before
I became self employed, I used to find female lunchroom and peer group settings
the most difficult thing to cope with. Because of these women’s neurotypical
(ie non-autistic) brain-wiring, their conversation would fly around very fast
on a great array of topics that I found uninteresting or couldn’t follow. They
would seem like speeded up chipmunks, so hard to keep up with! Lunchtime was
more exhausting than working, and I would be wondering what I could possibly
add to this or that typically feminine discussion topic, when all of a sudden
the talk had shifted to something else, and I was struggling to orient to their
new topic. When I finally found a space to say something, whatever it was I had
to say would often sound very intellectual or off-beat to the other women.
Their jaws would drop and they would stare at me and some thought I was showing
off and trying to be smart. Or the view I expressed was quite contentious (to
them!) and they would be aghast and turn their faces in disgust or start
arguing. And yet if I didn’t join in and chat I would be seen to be unsociable.
As I didn’t know anything about autism back then I could not advocate for
myself and I would pretty soon find myself being shunned by the group and on
the slippery slide to being sacked.
I easily get confused with some non-academic learning
situations eg spoken directions, navigation, recognizing landmarks, remembering
who’s who and “picking things up as you go along.” Although I was always top of
the class in formal learning, when it comes to hands on learning and doing what
other people do, this is where I always felt the effects of the previously
unnamed and unknown hidden disability. Noticing and copying other people’s
actions is very hard for me; I now know this is through a lack of mirror
neurons and also a lack of co-ordination. Working out what’s going on in some
very chaotic environments is also hard; I now know about sensory overload. But
in my previous job in a school as a teachers’ aide, when I insisted on being
given written instructions for various end of term preparations, my supervisor
thought I was criticising the way she did her job and was failing in teamwork
for not wanting to go along and copy others and be “one of the girls”. I have
since found out that the autistic animal scientist Dr Temple Grandin relies on
written instructions but at the time I knew nothing about autism so I couldn’t
explain my needs.
Similarly when I had difficulty working out what to do in a
very busy noisy environment, before I knew anything about autistic sensory
overload, I would be seen to be lazy, and the negative perceptions would
continue when people noticed that I couldn’t work as fast as they did in
physical jobs. My preference for more white collar tasks, instead of being
understood as an attempt to use the strong abilities that I do have, or an
attempt to avoid environments where I do poorly and get picked on, was seen to be
further evidence of my being lazy and showing off and failing at teamwork. But
the main reason why I was pushed out of this job was because, in my usual
duties as a Maths Extension Numeracy Aide, I was extremely popular with the
students. Everybody wanted to be in Ms Said’s group. Everyone said they could
understand the way Ms Said explains maths. Kids warmed up to my obvious
enjoyment and of maths and original ideas and activities. Regular teachers
liked my ideas more than they liked their Leading Teachers ideas. I was a
threat to the establishment.
It wasn’t until I was in my 50s that I learned about high
functioning autism. It took me years to research this more closely and start to
identify with this spectrum. I was worried about the effects a label of hidden disability
would have on my self-image, my family, my career. I had good reason to fear getting
labeled – I was officially diagnosed in 2013 by an autism “expert”, who wrote
in her report that I was only capable of one-dimensional tasks and autistics
have trouble writing! I ripped up the report and put it into a recycle bin in Redleap
Park, I couldn’t stand to even have this rot in my own recycle bin. I demanded the
expert change her report, which she did, and eighteen months later I published
my first book.
These days I am self employed as a private tutor, teaching
maths, literacy, special needs and any other subject I am asked to teach – I can
read a text book on one side of me and tutor a student on the other side of me
(providing I don’t have to figure some damned educational computer software in
the middle!) I have several autistic students and many students from different
ethnic backgrounds. Parents and students like me and have faith in me. Kids are
excited when I am coming to their house. There is no stuffed up peer group
expectation or hierarchy to contend with. Nobody feels threatened by me having
a brain in my head. I am a very popular tutor for Islamic girls in the northern
suburbs. I have met dozens of Islamic families and they are all very ambitious
for their daughters’ education and are very positive about learning maths. Quite
a few of my client families know I am on the autism spectrum and either it
doesn’t make any difference to them or they think it is an asset - which it is.
