You may have heard people talk about ‘the spectrum’ or ‘the Autism
spectrum’. You may have heard people say that “oh, everyone’s on the
spectrum somewhere” or “we’re all a little bit autistic”. The first
thing to know is that those last two statements are flat out incorrect.
You are either on the autism spectrum or you aren’t.
The spectrum essentially refers to the fact that every Autistic person
is different, with different strengths and challenges. As the saying
goes, if you’ve met one Autistic person, you’ve met ONE Autistic person.
There is as much diversity in the Autistic community as the neurotypical
community.
The second thing people tend to believe is that the spectrum is linear
and every Autistic person is a dot on the line, either less autistic or
more autistic, or “high functioning” or “low functioning”. These are
difficult terms and ones a lot of the Autism community rejects. In old
school language, I would be called “high functioning Autistic” and until
recently I would have been labelled as having “Aspergers Syndrome”
(which was another term for high functioning). It’s important to note
that the label of Aspergers Syndrome has been removed from official use
and those of us previously thought of as “aspies” are now included in
the spectrum.
The challenge with the term “high functioning” is that it makes it
difficult to get the support you need. High functioning mostly just
means we’re really good at masking our distress, or camouflaging
ourselves to “pass” as neurotypicals. This costs us a lot in terms of
our mental health and energy and high masking individuals are more
likely to experience episodes of Autistic burnout, which I can certainly
attest to.
The challenge with the term “low functioning” is that it is used to deny
agency to the individual, might be confused with an intellectual
impairment, is demeaning and locks the individual into a box that might
be difficult to get out of.
An Autistic’s person’s ability to “function” (whatever that truly means)
can change from day to day, hour to hour, year to year. The truth is,
though, that while I may look “high functioning” I can assure you that I
can be very “low functioning”. If the perfect storm of stressors strike,
I can be confined to bed. In other words, if the spectrum was indeed
linear, I could move up and down it depending on whatever else was
happening in my life at any given time.
Last year, I went through a prolonged Autistic burnout (though I didn’t
know it at the time because I hadn’t yet received my identification) and
I cried every day for eight months and I was convinced I need to quit
writing. Now, post diagnosis, I know so much more about how to help
myself and I am excited as all get out to bring you a new book! That would be
‘movement’ up and down a linear scale but the truth is simply that our
abilities are determined by our capacity at any given time.
In reality, the spectrum is like a pie chart. Every Autistic person has
a ‘spiky’ profile where we’re really good at some things and struggle a
lot with others. Everyone’s pie chart will look different.
Technically, these days Autistic people are given a category based on
the likelihood of how much support they need. These are “needs support”,
“needs more support”, “needs high levels of support”. These are boxed
this way so that the NDIS can decide how much funding they wish to offer
that person.
p.s. I’d love to be able to credit the owner of that image but there’s
no tag on it and I see it everywhere online so it’s been shared so many
times it’s impossible to find.
Josephine Moon 