There are many heated debates within the autism community; vaccines, therapy choices, diet, and alternative communication, just to name a few. Each one has devoted groups who are ready, at any time, to fiercely debate their conclusions. At the heart of it all is one debate that I believe shapes our view of everything we hear and study about autism – Is autism a blessing or a curse?
I read dozens of posts every day in the autism community written by parents, self-advocates, and professionals alike. I see a wide array of posts arguing their positions. As a self-advocate I have had to develop a thick armour trying not to take any jabs at autism delivered from those frustrated with it personally. It’s exhausting, but I am recharged by the potential that a positive dialogue will grow out of these discussions and into opportunities for people with autism.
But the kinds of posts that still hurts me to my core are the photos of rooms that have been destroyed, usually accompanied with a footnote about how autism has destroyed their lives and anyone who believes otherwise is delusional. It hurts because these photos are from the wrong place inside the mind of the person posting it.
Stick with me a moment while I explain.
I can say, with confidence, that my autism has not been a bed of roses. I still get embarrassed when my words get all muddled up and I can’t communicate that which I wish to say effectively. I don’t like that clothes shopping is a multi-month event to find something my skin can tolerate but still appeals to my personal sense of fashion. I especially don’t like it when people stop talking to me about their feelings and personal experiences as soon as they discover that I am on the spectrum, because they fear I lack empathy.
My life is filled with daily struggles and pains that sometimes can only be soothed with a day, wrapped in blankets, watching television. So, I can certainly understand what causes parents and caretakers to reach such high levels of frustration as they try to, from the outside, understand what their child must be going through.
However, when someone posts a photo declaring that autism is horrible and no one can understand their experience, they make autism into their enemy. They have developed a hatred for autism, seeing it as this invader who is robbing them of a connection to their child. Fear is a stone, throw enough of them and we can hurt others deeply, but hatred is a boulder that totally obscures our view and flattens everything in its path.
The pain and frustration of whatever you are going through is real but hating their autism doesn’t get you any closer to your child. There is a surprising amount of emotional support from the autism community available for you, but when you turn against the ones who have made peace with their autism, telling us that we are delusional, you’re not attacking our autism either. You only succeed at making other autistic experiences, including that of your child’s, completely invalid to your own.
I know my words hit hard if you are one of the people who make such posts. Even though your posts have hurt me, I’m not typing this in retaliation. I have no need to make you hurt too. The point here is to give you another view to consider.
Just because autism causes some suffering doesn’t mean I should make it my enemy. Autism is my obstacle and therefore my path. In the book Meditations by Marcus Aurelius, he says:
“Our actions may be impeded…but there can be no impeding our intentions or dispositions. Because we can accommodate and adapt. The mind adapts and converts to its own purposes the obstacle to our acting. The impeding to action advances action. What stands in the way becomes the way.”
If I spend my life looking for ways to rip autism from my DNA, I cannot move forward on my path and I fall into the hands of victimhood. If I hate autism, I must hate myself because there are so many ways in which autism is so deeply interwoven with my sense of self that I sometimes do not know where autism ends, and “I” begin. If I hate myself, I will not see a future for me.
Autism can stand in my way, so I make it the way. The hard work of reframing, reworking, and fighting those aspects of autism which impede my life is a type of suffering that is inevitable. I can’t escape that no matter how much I, or others, might wish I could. I set my intentions to grow and live a happy life. I work to adapt and to help society learn to accommodate us.
If I allow myself to hate my autism, I stop growing, but I also stop growing if I love my autism. At the onset of my autism journey, had I adopted the mindset that I love my autism and that nothing about me needs to change, I can promise you I would not have been able to adapt to the changes life would require of me later. As I age, autism manifests differently and its impact changes. When I was very young, the struggle to make friends was a huge issue, denying me the opportunity to learn social cues from my peers. However, those issues are small now that I’m in my 40’s. Nowadays, I find my struggles with organization to be a far bigger hurdle than making friends.
Autism is a personal journey. While the diagnostic criteria groups all autistic people under Autism Spectrum Disorder, the experience those criteria define differ from autist to autist. Once a diagnosis is given, attention should shift from what makes it autism to what makes it a spectrum. Early interventions need to focus on the individual as they are at the time, true, but also allow for change by planning for adaptability. Models should leave room for growth and do more than just manage the symptoms that make others uncomfortable. The comfort of the room should not come before the autonomy of the individual.
Alfred Adler, a German philosopher, wrote extensively about what he called Individualpsychologie which means the psychology of the unique, indivisible, and undivided person. He understood the variations of human experience and how that changed our interpretation of what is around us. He also recognized that we have a concept of Gemeinschaftsgefühl, a concept that is best translated as “the feeling of community”. This feeling of community is what drives autistic people to work so damn hard at navigating the neurotypical world. We want to belong, but that often comes at the sacrifice of the unique, indivisible, and undivided person. The hyper-focus on behaviour therapy doesn’t support our desire to belong to a community. Instead, it shifts focus to fitting in. Fitting in is limited to the moment. Belonging is lifelong.
In the book: “The Courage to be Disliked” the authors phrase, beautifully, the core of my personal journey with autism therapy.
“‘You are not living to satisfy other people’s expectations.” And further, “Other people are not living to satisfy your expectations.”
Though the book has many things to say with which I disagree, I appreciate the phrasing of this idea. Therapy is too often presented as a set of expectations that people with autism feel they must satisfy. We then, in attempt to make things ‘fair’, start to expect the neurotypical world to satisfy our expectations. This is a vicious cycle of thought that often leads to failed therapies, diluted progress, and frustrated caretakers. Now filled with feelings of inadequacy and failure, the unrequited expectation of the autist is often expressed through our, already over-burdened, sensory system. For me, that means my emotions are on my sleeve, and I retreat. For others, that means punching the walls. No one benefits from setting expectations.
By shifting focus to the individual and setting up therapy to focus on supporting that sense of belonging while giving the individual the tools to manage what stands in their way, lifelong progress can be made. In my experience, hating my autism never led me to this process, but neither did loving it. Autism can be my obstacle, but the obstacle is my path. A balanced view of autism keeps me from setting expectations that often lead to a victimized mentality. By accepting that my autism is different from another autist’s experience, and that autism changes as we age, I have been able to develop tools that help me problem solve when I feel stuck.
Autism is the path. Please, don’t hate it. Accept the path. Only then will the solutions you need, and the connection to your autistic child you so desperately desire, emerge in plain view.