What makes someone autistic? What should we do about/with/for autistic people?
Can we, should we, get rid
of autism? How
do autistic people feel about themselves and about society’s view of them? What would it be like to be autistic? If I’m not autistic, then
what am I? Am I normal? Why does
autism exist at all?
Do
you know anyone who has been diagnosed as autistic? Or perhaps you know someone whom you suspect
may be autistic, or you have a friend whose life is affected by an autistic
person. Given the subtle pervasiveness
of autism these days, taking a closer look at how this disorder influences and
is influenced by our scientific and cultural practices might tell us something
interesting about ourselves. I have been
thinking about some of the different ways in which autistic people are
portrayed, both by scientific researchers and in the media, and how this is or
is not consistent with the personal experiences one might have with an autistic
individual. I am curious about the wide
range of possibilities in how one can choose to interact with an autist, from
treating them as a less-than-human case to be diagnosed and fixed, to engaging
with them in an effort to learn how the world feels from their
perspective. This leads to questions
about what it means to be normal, who sets the standards for normalcy, and
whether or when it is right or fruitful to try and normalize others, like
autists. Let’s see how autism looks from
two opposite perspectives – as a disorder that needs to be explained and fixed,
and as a different way of being normal – while seeing how these perspectives do
or could interact with one another.
Explaining and Fixing Autism
Autism
spectrum disorder: why does it occur,
how can we test for it, and how can we prevent and/or cure it, or at least
intervene to manage the symptoms? Autistic
behaviors include impaired social communication such as delayed or nonexistent
language development and a lack of empathy toward others, as well as repetitive
behaviors, obsession with sameness, oversensitivity, and in some cases specific
high cognitive abilities. Recent blog
posts on autism tell us about all kinds of scientific discoveries that link
biological, neurological, and genetic factors to autism. Note how autism is assumed to be a deficit or
defect that should be corrected.
This recent blog reports that mitochondrial deficits have
been confirmed in children with autism.
These sub-optimally functioning mitochondria are in cells called
granulocytes, which are an immune cell responsible for fighting infection in
the body. The authors suggest that the impaired
functioning of these immune cells results in reduced cognitive functioning in
autistic people. It seems to be a
general assumption within the research community that cognitive functioning is reduced for autists, as opposed to being
perhaps a different style of cognitive functioning (as we will explore below). There is also a strong desire to want to say
that the impaired functioning of these cells causes autistic behavior, but as with studies that attempt to link
genetic or neural patterns to autism, thus far we can speak only of
correlations.
Another recent blog post warns that a prenatal screening test for
autism might be around the corner.
According to the author, neuropsychiatric researcher David Cox, the
approach is to look for differing protein fingerprints in the blood samples of
autistic and non-autistic people; so far there is a blood test that is 80%
accurate in detecting Asperger’s syndrome (the highest end of the autism
spectrum disorder). Next steps include
improving the accuracy of this test and generalizing it for autism, which would
make it available as a prenatal screening tool.
Let’s hope that the obvious ethical implications regarding whether a
potentially autistic fetus should be aborted will be carefully considered in
conjunction with the development of such a test!
Scientific
research and ethical issues regarding autism are complexified by the fact that
autism is such a wide spectrum. While a
severely autistic individual may require care and intervention to be able to
survive, high-functioning autists may not desire to be either diagnosed or
normalized. When scientific research
focuses on looking for deficits in autistic individuals – impaired cellular functions,
compromised brain activity, unusual genetics – the message is that autism makes
someone less than normal, a case to be prevented and fixed. But what if the “abnormal” brain scan of a
high-functioning autist with specific high cognitive abilities is actually
indicative of an enhancement rather
than a deficit? How would scientific research on autism
itself be enhanced by a shift in the attitude of the research community from
approaching autism as a deficit, to viewing autism as a new kind of normal?
Autism as the New Normal
From
the perspective of being its own sort of normal, autism is simply a different
way of making sense of the world, and we can look upon it as an opportunity to discover
new and interesting ways of being. Just
like any other people, autistic people have a variety of personalities and
interests, suggesting that there is probably not one blanket intervention for
helping them to better survive in our society.
What if we approached intervention in autism by looking for the “normal”
within each autistic individual, supporting them to each achieve their own best
normal? A variety of recent blog posts
support such a notion, or at least complexify this topic. Ask yourself how these following viewpoints
might be able to influence scientific research on autism.
As
described on this blog for Coursera, a service that offers free online
university courses, severely autistic 17-year old Daniel loves learning but is
unable to attend a standard university program. Amazingly, however, with extensive support
from his parents and a teacher, who trained him to use a letterboard to give
answers (as an alternative to speaking), and taught him to be an “expert close
reader” by using periodic reading comprehension questions to keep his attention
focused through long complicated works, he successfully completed six
university level courses, including poetry, mythology, and literature. “Dan loved learning and kept steering us
toward subjects where he would be asked to compare ideas because connecting
different pieces of information into knowledge made him feel, as he spelled to
us, ‘less autistic’”. Do all autistic
people want to feel “less autistic”? No,
for example in her video “In My Language”,
Amanda Baggs claims that learning to speak our language is a narrowing and
constricting experience compared to her autistic self-expression. However, for Daniel, being able to read and
critically comment on his classmates’ 800 word essays, while also writing his
own essays including logically constructed arguments, all in a community of
fellow online students who acknowledged and appreciated him, helped him emerge
from his sense of isolation.
Emily
Willingham is a developmental biology researcher, writer, and parent of an
autistic child. In her recent blog she explains how it makes a difference for her son whether autism is portrayed as a
condition of suffering to be pitied, or as a way of being in the world with its
own unique potential to achieve.
However, while “journalists seem
increasingly to recognize that autistic people can view their autism as who
they intrinsically are and that writing about autism as a universal negative
dehumanizes and depersonalizes autistic people,” in autism research “what you won’t find is enough research that
involves asking autistic people themselves about themselves, about what they
need, what would support and help them most, what would help them learn and
thrive and manage the deficits that come with their condition.” While
Willingham still uses the language of “deficit” in relation to autism, she does
take the important step of including the autists themselves as important
factors in the research about autism.
Finally,
what does this mean for non-autistic individuals who might also be suffering in
terms of navigating society successfully?
A recent blog post partially reproduced a letter from a
woman in her 30s who was wondering whether her issues with depression and poor
family relations might be explained or ameliorated if she could get an autistic
diagnosis for herself. She says about
herself, “I have always felt like an outsider who never quite fits in. From a young age, I’ve always felt distant
from those around me. I feel I have very
little in common with people and that we are on different wavelengths”;
however, she worries that she might be too high-functioning to be diagnosable
as autistic. But where exactly is this
fuzzy line between a high-functioning autist and what we could call a
low-functioning “normal” person? How
many individuals out there are lonely or depressed, or suffer from feeling
different and distant from others? Given
the arguably general climate of anxiety and alienation in our current culture, perhaps
what this suffering woman desires in seeking a diagnosis of autism is a sense
of belonging, a new standard of normalcy by which to measure herself.
So,
has autism become a new kind of normal?
Yes, perhaps there exists a way to be autistic that is relevant for us
to recognize and honor. At the same
time, we should not forget that the ultimate standard of normalcy by which we
can successfully measure ourselves is our own.
Lest you think, however, that the moral of this story is that we should
all pat ourselves on the back for being our own kind of normal, the
implications of shifting to such a view are more extensive than
self-affirmation! Social beliefs, for
example in normalcy, influence scientific practice in both overt and
unconscious ways. As we saw above for
scientific research on autism, a belief that there exists a given standard of
normalcy leads to the assumption that autism is about deficits that must be
explained and fixed. A shift in this
belief to viewing autism as its own kind of normal will lead to reformulations of
research questions and potentially exciting discoveries about the genetic,
biological, and neurological markers that are affiliated with different ways of
making sense of the world.
