By Caitlin Wray
Please welcome guest-blogger Caitlin Wray.
I am a parent of a child who is considered "high
functioning". When I come across well-intentioned people who insist on the
need to retain spectrum sub-divisions like “high” and “low” functioning, I
understand where they are coming from. It’s a place I myself was, not so very
long ago. We have been locked in this notion of functioning levels for so long,
it seems almost impossible to conceive of any other way to represent and
communicate meaningful differences between people on the spectrum. But I’ve
come to understand that the challenge of finding a new way to understand
functioning levels is a secondary concern. The primary concern is that the
existing model is hurting people – autistic people, like my son.
In the past, when I pondered the issues surrounding the use of
high and low functioning descriptors, I thought about pragmatics and real-world
applications, clinical considerations and even their impact on my ability to
easily describe my son’s place on the spectrum to random strangers in the
grocery store – you know, when you’re getting ‘the look’. But I have come to
understand that there was an ever present and inherent flaw in my perspective:
it eliminated the perspective of autistics themselves. I say this because at
the end of the day, parents and professionals can speculate all we want on the
parameters of the spectrum and what it means – but it is ultimately autistic
people, and only autistic people, who can speak with any authority on the
subject - because only they live it every day.
It’s a flaw that will follow us forever in anything we write
about autism, so long as we are using high and low functioning as reference
points. Not so much because they are moving targets, but because they are illusions. They are illusions because
there is absolutely no way – no way – to know by looking at a person (or
hearing them, or seeing their words typed on a computer) whether they are
high or low functioning, or were formerly high or low functioning. We have no
accurate measuring stick to judge the amount of effort, from minimal to
monumental that is going into the outward behaviors we observe. In fact, the
only person qualified to judge the level of effort is the autistic person
himself or herself. What I hear autistic people saying is that using these
illusions as reference points is dangerous, in a very real sense. They are
saying that in their community (and they are the autism community – the rest of
us are the periphery) there is no way to accurately pinpoint high and low
functioning as ‘starting points’ or ‘ending points’ or even as ‘midpoints’.
This is because they are experienced inwardly and exhibited outwardly in vastly
different ways by each individual autistic, and can never be known in any
objective sense. These terms are inherently subjective, but are used widely in
objective contexts. From a clinical – or even parenting – perspective, I can
see how this sets us up for trouble.
It’s not an easy concept to grasp – I myself have struggled with
it. It requires us as non-autistics to completely remove ourselves from the
autism lexicon we’ve been immersed in, and place ourselves into the context and
language of autistic people themselves. In effect, it requires us to empathize
with them on a fairly complex level. In our current model of understanding
autism, ‘high functioning’ is a static, single point of reference. It is like a
little flag pinned on a map. There is another little flag called ‘low
functioning’ pinned on the other side of the map, and there are autistic people
sitting at and between these points. There are even kids like my son, who are
just far enough beyond 'high functioning’ that they are in danger of falling
off the edge of this flat world entirely.
But Autistic people are telling us this is an incorrect
depiction of what life is like for them.
This out dated model depicts functioning levels as fixed places,
places that you either move toward or away from. What autistics are telling us
more and more is that this is a fundamentally flawed concept. They are telling
us that, in their experience (and let’s remember that they and only they
actually experience autism), ‘high functioning’ and ‘low functioning’ are not
fixed points. They are illusions. When you think of those two concepts – a
place being a tangible, real location and an illusion being an imagined
construct – you can see how the chasm between them creates a disconnect. It
prevents us from having meaningful conversations about the underlying issues of
skill acquisition, and learning about what will truly help us raise our
autistic kids into happy autistic adults.
Because of this notion that high and low functioning are fixed
locations, we have been making easy assumptions about where that location is,
how to get there, and making judgments about who is already there (and who is
nowhere in the vicinity). Many autistic people are telling us that this flawed
methodology is hurting them in very real ways. You can see it when an autistic
person is sending messages out over a computer and is instantly labeled ‘high
functioning’ because ‘they can communicate’. And then because they have been
labeled that way, they are told they are no longer qualified to advocate on
behalf of ‘low functioning’ people – when in reality, they were themselves
labeled ‘low functioning’ a decade or a year or 5 minutes ago. You can also see
it when a non-verbal autistic is assumed to have low intelligence, because
‘they cannot communicate’. In reality, the high functioning autistic may be
trapped in their apartment by anxiety and depression, while the low functioning
autistic may be on the verge of discovering a new element – and they’ll tell
you all about it using their keyboard. It becomes more and more clear that high
and low functioning labels are really an illusion, rather than fixed locations,
once we start to understand the experiences of autistic people themselves.
And I guess when we hear that, it needs to really give us pause.
I still struggle with understanding what we can replace high/low functioning
with, from a practical standpoint. But I know one thing: my ‘very high
functioning’ son looks neurotypical when he talks like the little professor in
a group of intensely autistic kids, and he looks intensely autistic when he
covers his ears and hides under a desk in a chaotic classroom of neurotypicals.
This visual always reminds me of the illusionary nature of these labels, and
how his label meant we had to fight like hell
to get him the supports he needed, because so many people had determined he was
'too high functioning' to need them. In the end, no amount of support would
change the sensory onslaught that comes with a large mainstream classroom. No
amount of support would reduce the overwhelming social demands of a busy
school. And no amount of support would change the expectations that teachers
had for my son to act ‘high-functioning’ all of the time – because he could do it some of the time.
Ultimately, the expectations that came with the high-functioning label nearly
killed my son. And I mean that – they nearly KILLED him. At the age of 7 my son
began to talk about not wanting to live anymore, because he felt all he did was
disappoint and frustrate people all day long, every single day. I cringe when I
imagine how that feels. People who made assumptions about how he should behave
as a high functioning autistic, assumptions about how much he should be able to
handle, to process, how quickly he should be able to respond, how many rules
about politeness he should remember, how much of other people’s intentions he
should be able to read. People who felt he was choosing to be or not be
high-functioning on any given day.
When I really allow myself to truly empathize with my son and
what that must feel like – then I start to understand the depression rates and
the suicide rates among so-called ‘high functioning’ autistics, and I start to
understand why it is so important that we stop using these illusions as labels.
Because we are not the ones paying the price for them, they are. And that in
itself is reason enough to really listen and reflect on what they are telling
us.
As a parent, I need a more accurate, more meaningful way to
understand and describe the challenges my son faces every day. Parents of
children who are labeled ‘low functioning’ need that too. If the purpose of
using functioning levels is to convey some semblance of what people on the
spectrum are living with, what their needs and goals are (and how near or far
away they are from those goals) – then dual ended functioning levels simply
don’t work. In fact, as little as they say about the real lives of autistic
people, high and low functioning levels speak volumes about what the
neurotypical world assumes and expects from them. I don’t know where to start
in the process of dismantling the old model, or the process of finding a new
one. But I think the reason I don’t know where to start, is because I’m not autistic. The new model, when it
arrives, cannot be conceived of by parents, nor imposed from the outside by
professionals – no matter how well meaning. This time, it has to be borne from
the perspectives and experiences of autistics themselves.
We
should settle for nothing less.
