There seems to be growing discussion about how autism is perceived – as a disability or as an identity – or perhaps both. Seattle Children’s Autism Center family therapist, Lynn Vigo,was recently interviewed for an article on the topic in Seattle Magazine. Here’s more of Lynn’s thoughts on the subject:
My experience with autism
As a parent of a teen with autism and also a family therapist at Seattle Children’s Autism Center, I am keenly aware of how very broad the presentation of what we call “autism” is. There is no such thing as “one size fits all”. We often say that, “if you’ve met one person with autism . . . you’ve met one person with autism.”
In my daughter’s case, it is a disorder that globally affects her well-being and ability to function on a daily basis. At almost 17, she is nonverbal and has been unable to learn an augmentative communication system, is not completely toilet trained, is unable to point or show us when she is hurting, has chronic health and behavioral challenges including poor sleep, emotional dysregulation and self-injury.
When she was first diagnosed, we tried just about every therapy to make autism “go away”. It took a few years to realize that, while these might help mitigate some deficits, autism for her, would be life-long and life-changing for us, her family. Accepting this, we stopped trying to “fix her” and began to see not just her challenges but her strengths – and more importantly, who she is. We often say, “She is who she is” – perfect in her imperfection, just like the rest of us.
And like the rest of us, we will always try to help her to do and be her best. I love her with every fiber of my being and believe that she is the best thing that ever happened to me. Along with that, autism is the hardest thing I’ve ever faced. We have daily difficulties that require 24-7 oversight for her safety. It is too complex to go into detail but parents of kids who are significantly affected know what this entails.
Early on, it is hard not to compare your child with their peers, particularly when the gap between them widens. I did stop though as it became clear that I needed to use a different yardstick by which to measure her progress. As she got older, it was harder to separate autism from who she is. I don’t look at other teen girls and wonder what she would be like if not for autism.
Cultural identity in the autism community
I facilitate support groups for parents of children and adolescents with autism and we often comment that autism has its own culture, complete with its own language and norms.
We talk about our kids “stimming” (meaning behaviors that stimulate one’s senses), about “being gfcf” (short for the gluten-free/casein-free diet that many on the spectrum are on), about our kids “perseverating” on things (meaning repetitive movements, thoughts, or speech that our kids often “get stuck in”) and about “scripting” (overusing words or phrases heard elsewhere rather than from original thoughts, such as quotes from books or movies).
Our norms are unique. Our kids can be loudly spinning and echoing and while others who don’t understand autism may glare, we don’t bat an eye. When a parent comments on the difficulty in getting typically-easy tasks done such as grocery shopping, other parents of kids with autism understand. When we greet each other, one of our first questions is, “Are you sleeping?” We often lament that others just “don’t get it”, meaning they can’t begin to imagine what our lives are like.
I’m aware there are some who prefer to think of autism as their identity rather than a disorder, something to be fixed. We tend to see this with those who are more mildly affected by autism rather than those with what we tend to think of as having “classic autism”.
At Seattle Children’s Autism Center, we serve families from all walks of life and kids across the broad spectrum. On any given day in our waiting room, you will see kids who talk quite capably and may come across as aloof or quirky, kids who vocalize loudly, who can’t sit still and pace the room, kids who demonstrate aggressive and/or self-injurious behavior. We see it all.
We have some teen social groups that meet and it is not uncommon for discussion about self-identity to occur. Most teens wrestle with who they are on this planet and with autism it can be that much more confusing. One of the hallmarks of autism is difficulty in taking the perspective of others – being able to imagine what others think and feel. This can result in difficulties in social interactions when unable to put oneself in the shoes of another.
I certainly can appreciate a teen with autism not wanting to be thought of as having something wrong or being broken in any way. If I were in their shoes, I might feel the same way if it were suggested that there is a desire to eradicate what is perceived as one’s identity.
I was unaware of a “movement” when my daughter was diagnosed fourteen years ago. I think that as the definition of autism broadened to include those who are more mildly affected, an awareness of this “other end of the autism spectrum” began to take root.
I believe that everyone has the right to identify him/herself in whatever way is most fitting. Who am I to judge another individual? Conversely, I don’t believe anyone has the right to tell another how to self-identify. I don’t believe that one person or a small group of people can accurately say that they represent the whole of a large group of people. I also think it is important to point out that mine is the perspective of a parent not the perspective of a person with autism. Parents, siblings, grandparents, spouses, and the person with autism each have a unique perspective.
“Autistic People” or “People with Autism”
My daughter has autism. I do not like the term “autistic” because it does not define her. She has autism the same way she has big brown eyes and asthma and dimples and no patience in her being. None of those things alone define her. She is first and foremost my child. If she had diabetes, I would not call her a diabetic for the same reason. It does not define the whole of a person.
I strongly value diversity and individuality. Dare to be different. Be proud of who you are. Choose to be called autistic. But don’t fault me for preferring that my child be considered a child with autism. We don’t all have to be like-minded about this but being open-minded is good and so is letting our commonalities unite us rather than our differences divide us. Since the beginning of time, individuals have wrestled with both belonging and being distinct. It is part of being human and we need both.
I remember when the stereotype for autism was a silent child, “locked away in his own mind”, rocking and flapping in the corner. Then “Rain Man” came out and for years this was what people thought autism was. That surely didn’t fit most of us! I have faith that in addition to these two portrayals of what we call autism, the unique stories and portraits of many will continue to be told and seen.