About Autism Parents
I see this happen a lot. An autistic adult writes something about parents of autistic kids– usually something snarky, or bitter, or angry, or all of the above. They are then inundated by comments from parents saying “We are not the enemy!” and “I have given everything for my autistic child. How dare you judge me?” Members of the autistic community bite back, yelling at those parents for derailing, not listening, and trying to silence autistic people. And everyone goes away with hurt feelings.
I understand the defensiveness of those parents. There are few things in this world as strong as a parent’s love for their child. Most parents would give their life for their children. Parenting a child is a life-changing experience, more intense than any full-time job, more challenging than any exam, more filled with emotions than any other part of life. For many, being a parent becomes the core of one’s identity, and the idea that one may be doing it all wrong is soul-crushing. And the idea of being judged by someone who hasn’t been there is infuriating.
(I will mention here that I am not a parent. I got all the above from talking with my own mother, from being a nanny, and from being close friends with people who are parents).
I understand, too, the fury and contempt of the autistic adults who see these parents as wanting a “cookie” for having good intentions, for having struggled and suffered and sacrificed. Most of them have struggled and suffered more than you will ever know.
The vast majority of people with disabilities, particularly developmental and intellectual disabilities, have been abused. Often the abuse was sexual, and parents may have been the perpetrators or simply failed to protect their children from other predators. Sometimes the abuse was unintentional, as when a parent fails to understand that a stimulus or activity is intensely painful for the child. Often, too, the abuse comes in the form of therapy, and is meant for the best, only to traumatize the child instead and destroy their self-esteem. Sometimes parents kill their disabled children, and then we disabled adults go online and read the comments… and find that most people’s sympathy lies with the murderers. It was so hard for them to have a disabled child. They tried so hard and gave so much and in the end it was really a mercy killing and everyone is better off and…
So parents, that’s what comes to our minds when you say: “parents are not the enemy.” Sometimes parents are the enemy. Is it fair for us to judge you all because of a few horror stories? No. But while parents murdering their children may be rare, the rest of what I mentioned isn’t. It’s a bitter truth, as much for us as for you. Take off the rose-colored glasses and face it.
My mother was not the enemy. She made mistakes with me– all parents do. She did things I hated, and things that I hated her for. She misunderstood me and my needs at times. She failed to teach me certain crucial skills, and taught me things I didn’t need, like how to worry too much. She made a million errors… and she was a wonderful mother. She loved me unconditionally and she never asked me to be anyone other than I was. I never felt threatened by her in any way.
There is a difference between the things my mother did wrong and the things many of my friends endured as children. I need both hands to count all the people I know who were raped by their caregivers. I know people who were beaten, bullied, and above all, shamed for being who they were. They were corrected, constantly, for the way they spoke (or didn’t), acted, looked, and thought, to the point where they believed they could do nothing right. This kind of abuse is by no means limited to children with disabilities, but it is greatly magnified in cases where the children cannot easily pass for “normal,” or follow all the rules their parents set, or act and look the way society expects them to. The corrections were not always meant as abuse, but fundamentally, they consisted of asking these children to be something they were not, and that is one of the most damaging experiences a child can undergo.
Again and again, I hear parents say “I wish my child didn’t have autism. I wish I could cure my child’s autism. I will fight my child’s autism with my dying breath.”
What they usually mean is: “I love my child with all my heart, and it hurts me more than anything to see them struggle so hard with things others do easily, to see them pitied and looked down upon and misunderstood. I want to take away the symptoms that cause them pain and distress– the anxiety, the oversensitivity, the difficulty they have eating and sleeping and walking and talking. I want them to live and learn and love, and I am scared beyond belief that this diagnosis will make it impossible for them to have a life like mine, a good life, a happy life.”
What their children hear is: “I wish that you did not exist, and that I had a normal child instead of you. There is something terribly wrong with you, something about YOU that causes me grief and pain and frustration. I wish you were something different. I will work tirelessly to erase your differences, to make you look and act and seem as normal as possible. I will never accept you the way you are.”
Children: remember that your parents love you, and that they do generally want what is best for you. Know that they care for you, and they fear for you. When they try to hide your differences, it is not (at least, not always) because they are ashamed of you or disappointed by you– it’s because they want to spare you the mockery and unkindness of the world. They want you to have a normal life because it’s the only kind of good life they know.
Parents: don’t wish for us to “pass.” Don’t wish for us to have a “normal” life. We will never be normal, and most of us don’t want to be. There is not a different person, a person without autism, hiding somewhere inside us. Yes, by all means, help us get treatment for the physical pain, the digestion issues, the sleep disturbances, and other symptoms that confer no benefit, but realize that these are not the core of what autism is, what the autistic experience is. Autism is a part of who we are, how we experience and process and interact with the world, and there is no cure for who we are and how we think– nor should there be.
We want to be ourselves, and we want to be accepted for being ourselves– quirks and stims and sensitivities and all. We can have good lives. We can learn and love and enjoy life and have successes and reach goals and build friendships and most of us can someday have jobs and degrees and families, too…. But we cannot do it the same way you did. We will never be like you. Our joys and fears and needs and loves are as strong as yours… but they are different, and you must accept them. Let us enjoy the things we want to do, and stop asking us to do the things we cannot.
Parents: it is up to you whether or not you are our enemies or our allies. Good intentions are not enough. Yes, we are asking a lot of you. We are asking you to change the way you think and perceive reality, and imagine a world in which “normalcy” is not the gold standard. We are asking you to be brave enough to be proud of our differences, to fight for our rights to live and learn and socialize and succeed in the ways that work for us. Work with us, not against us. Please.