We Are Not the Enemy
I have come into the world of autism rather late in life. I was diagnosed with Asperger's Syndrome in November of 2008, when I was 50.
Of course, I have always been autistic. Over time, I've learned lots of skills, discovered lots of strategies, and found lots of ways to adapt to my difficulties and to the world. Some of these adaptations happened in the several decades before my diagnosis; a great many have happened only in the past two years. It's always odd to me to hear people say that autistic people are inflexible, because had I not found ways to adapt, I'm not sure whether I would have survived at all – and, given the violence I experienced throughout my childhood at the hands of my parents, I mean that quite literally.
Finding out that I am on the autism spectrum gave a name to my challenges, and it catapulted me into a profound change in identity and purpose. As soon as I got the diagnosis, I wanted to help others on the spectrum, and I found in myself a desire to help parents understand their autistic children as well. In the course of more than two years in the world of autism blogging, though, I've encountered a troubling phenomenon: When it comes to speaking to parents of autistic children, I often find myself cast into the role of adversary.
I've been told by some parents of autistic children that I am not really autistic, because I am not autistic in the same ways that their children are. And yes, it is true: Even in my worst days, I would never be diagnosed as anything other than high-functioning. And yet, I'm always shocked when people attempt to strip me of my truth in this way. I've never presented myself as anyone other than who I am, and I've never attempted to say that I am just like anyone else.
I've also encountered a tremendous amount of raw hostility from people who are clearly angry at people with Asperger's and high-functioning autism in general. I understand where a lot of this anger comes from.
In some respects, it's simply a question of resources; there is a sense that high-functioning kids get more air time, more funding, and more respect. Whether or not that is true, the perception is there, and I get why it's there. The face of autism has changed, and some parents feel that their severely autistic kids now get short shrift.
In other respects, the anger comes from the experience of having people with Asperger's and high-functioning autism make pronouncements about how parents should raise their kids, and how they should feel about raising their kids, and how they should feel about autism in general, without ever having met the parents or the children.
But even with parents who do not attempt to un-diagnose me via Internet or engage in open hostility, I sometimes find myself posed as an enemy. And it's because I have this whatever-it-is called autism, and autism is the enemy du jour. God help me if I say anything positive about autism, or the necessity of respecting autistic people, or my feeling that autism isn't something I have, but one essential part of who I am. I end up being accused of insensitivity, denial, stupidity, and a host of other terrible things – when I'm not simply ignored altogether.
So here's what I want to say: I am not here to tell you that I understand what it's like to have severe autism. I don't. In fact, I don't know what it's like to be anyone other than myself. No one does. Each person on the planet has a unique experience of life, and no person can possibly say that he or she truly understands what it's like to walk in someone else's shoes. We can only guess. We can only do the best we can. But we can never know for certain.
I am also not here to tell you how to raise your autistic child. Not me. In eighteen years of parenting, I have read only one parenting book – and it drove me so crazy that I decided never to read another one. Among other things that had nothing to do with my life, the book described how much my daughter should be eating – two cups of this, seven ounces of that – when I was lucky if she ate two strands of spaghetti and a piece of carrot for dinner. The child appeared to be living on oxygen and formula. When I went to my pediatrician in terror, she said, “A starving child doesn't refuse food. You provide the food. She decides what to eat and how much. Forget about what the book says.”
And that was it. I figured that no one who had ever written a parenting book had ever met my child, and that all I needed to do was to pay attention and respond to what she needed. And today, she is happy, healthy, creative, adaptable, highly ethical, sociable, open-hearted, and college-bound. I followed my instincts, and she and I have a wonderful relationship.
So I don't have much fellow feeling with anyone who tells a parent how to raise his or her child.
And yet, I want to help other parents. I don't want to dictate. I want to provide insight. Those are two very different things. I understand sensory sensitivities, especially auditory ones. I understand not getting nonverbal signals. I understand anxiety. I understand visual thinking. I understand having so much empathy that I can't possibly express it all. I understand finding myself so paralyzed with feeling that I have to withdraw. I understand sensory overload. I understand having to move away from environments with too many people. I understand needing to have time alone in order to recharge. I understand why eye contact is so difficult. I understand why sometimes, I just don't want to be touched – and that it has nothing to do with a deficit, but with an overabundance of perception.
I understand the pernicious effects on my psyche of the constant talk of deficits to the exclusion of gifts. I understand how much it hurts when someone compares autistic people to robots or machines, ignoring our deep capacity for empathy and fellow feeling with other human beings. I understand how much it pains me to have an autism diagnosis compared to cancer or HIV or a car crash.
And I understand that non-autistic “experts” can never know what it is to be autistic, from the inside out.
I understand all these things, and so much more.
I very rarely mourn being autistic. I've spent many years learning to love who I am, and an Asperger's diagnosis won't undo that. But there is one thing I mourn, very deeply: I have always had a very, very profound need to help other people, and my sensory sensitivities make doing that face-to-face, on a regular basis, impossible. If I'd had a different neurology and the same heart, I'd have spent all my days helping others – especially those whom the society dismisses as worthless and without basic rights. But I am who I am, so I do my best to help through my writing. I write about my experience of being autistic, and I write about the ways in which autistic people are treated by the larger culture.
Many autistic people do exactly the same thing. You can find a number of excellent blogs by autistic adults who are not interested in telling you what kind of treatment or therapy to give your child. Many of us grew up in the “sink-or-swim” generations of autistics. We didn't get diagnosed as kids, and we figured out how to survive entirely on our own. We're not interested in debating the merits of this therapy or that one – but if your child is having an aversive reaction to a therapy, or if a therapy is not helping at all, we might be able to give you some insight as to why. You can then take that insight and see whether it makes sense when you look at your own child.
That's all I ask: that you listen to us, that you respect us, and that you acknowledge that many of us have insights that the average person cannot.
Please listen when I tell you: I am not your enemy. I am your ally, and I am your child's ally. Now and always.