Medical school didn’t prepare me for parenthood. It did train me to respect scientific limitations. I declined genetic screening because I didn’t want to risk my pregnancy. When I look at my son’s baby pictures, I realize he was as squishy and wrinkled as any newborn. But to me, he’s beautiful. Extraordinarily and uniquely so. Like most mothers, I fell in love.
When our community welcomed him, like generations before, we prayed for a life of Torah, Ketubah, Tzedakah— study, love, acts of justice. We weren’t thinking about conformity; achieving independence; or mastering developmental milestones. We enjoyed his pre-diagnosis years. I am grateful that people hushed their worries. My son developed in the ways that are important, at his own pace, along his own trajectory. Study, love, acts of justice. They left us alone. We knew he was different, but it wasn’t a problem. He taught himself the Hebrew alphabet and to read single words. And he was cuddly. I carried him everywhere in a backpack. He peered over my shoulder at the world– wonderfully observant. He helped me notice things– patterns of leaves in wind and sparkles in warm sand.
By the time my son was three, we needed help. We couldn’t get him to do anything he didn’t want to do including staying on the sidewalk. He cried a lot. We were tired. He was labeling things, but his speech was hard to understand and didn’t use it to communicate. The most painful thing about receiving an autism diagnosis was the message that professionals who control access to services don’t love our son. The psychologist compared the methods she recommended to training rats. The rationale was, “Do what is required to get him to do things typical children do. This is how typically developing children learn. Therefore, if your son does them, he will become typically developing.” This never made sense. We tried it. It didn’t work. My son doesn’t learn like typical kids.
We tried a lot of strategies. A few were very helpful. We observed different people work with my son. Early intervention was traumatic. It damaged our relationship for a couple years. He lost his passion for letters and numbers. But we learned to use picture icons, to manage dangerous behavior and to teach skills that aren’t motivating. We also learned how to make bureaucrats do things. And a lot about the importance of our country’s safety net—a system I never thought my family would depend upon.
The most important thing we learned was how to identify helpful people. It isn’t training that makes someone good. It is a personal characteristic—the ability to see my son for who he is instead of who he is expected to be. My son has to interview a person for the connection to become apparent. His interviews are wordless. Most young children can connect. Most people lose the ability as they learn to rely more on ideas than observation. People who study child development and behavior intervention have particularly strong stereotypes that are difficult to challenge. The key to building inclusive community is to provide opportunities for infants and very young children to play with Autistics without interference.
Some early educators lost track of the goal–study, love, acts of justice. My son’s contribution isn’t going to resemble that of others. Like Moses, my son is not a man of words. He may need a partner with a different set of gifts—someone like Aaron. That is ok. G-d creates people for a purpose. We make each other better. Activities of daily living and academics are important, but mundane. My son’s skills in those areas are still rudimentary, but slowly progressing. His gift to me is sacred, a window to Awe, Wonder, Joy and Pride. My son can be observed, but he can’t be tested. Perhaps that is best. Comparing him to a standard distracts from his gifts. Standardized tests don’t help him discover or achieve his potential.
Through the internet, I found Autistic community. The best support and advice has been from Autistic adults. Their insight has been invaluable. Since my son’s diagnosis, I haven’t sent out a holiday card. We have happy news to share. But sharing happy things triggers two responses: “You are such great parents!” or “He must be high functioning.” What they mean is “Thank goodness you sound like you are thriving. I don’t want to be helpful. If you talk about struggle, then I feel guilty.” The Autistic community creates spaces where I don’t have to rant about challenges for others to understand that we need help. Our family needs a lot of it. The help we receive is a blessing. Many parents feel threatened when asked to speak positively about their family. The reason may be fear of losing help.
Resources developed by Autistics help parents appreciate their children. Autistic community has fostered understanding of those who struggle to speak for themselves. I am deeply grateful to the Autistics who have demanded justice by living openly, honestly and unapologetically. It has paved the way for my family to do the same. I am also grateful for practical help and good company. I am especially grateful for the leadership of Duke Crestfield, Ari Ne’eman, Dora Raymaker, Jim Sinclair, Karla Fisher, Landon Bryce, and Ian Ford.
Clarissa Kripke, MD
Associate Clinical Professor
University of California, San Francisco, Department of Family and Community Medicine