Anlor Davin is an autistic author, blogger, and Zen student. She grew up on the West Coast of France and immigrated to the United States in her 20s and then married and had a child all before receiving an autism diagnosis. She was eventually diagnosed at 46 and detailed some of her experiences growing up undiagnosed in her memoir Being Seen. This week she shared some of her experience as an autistic French immigrant to the United States and how she used meditation to help survive and eventually flourish.
On your website, you describe your autism diagnosis as a life-changing and life-saving event traced back to your Zen practice of the years preceding it. Can you explain what this means?
I was formally diagnosed in 2010. The diagnosis came just in time, I just could not earn or find ways to pay my monthly bills. My sensory challenges went through the roof, and I was in extreme physical pain in my neck, left shoulder and back. Throughout it, I daily kept up my zazen (upright sitting meditation) practice: it was the only thing that made sense, it did not cost me money since I almost always did it at home, and I was able to seriously cover my ears and stay in the dark as much as I wished. At times during zazen it felt like I was hanging to a raft for dear life. Sitting zazen is what helped the stormy waters to calm down and the direction of my life to slowly come back on track: first I started to receive financial support from Social Security, then I was finally able to see a good neurologist (a long story), followed by the correct diagnosis and proper medical treatment, a supportive relationship, good friends, etc. I am so grateful for my Zen practice and all that came with it.
What instigated your immigration from France to the U.S.?
When I was 23 years old and emigrated to the U.S, I was too young and confused to understand what was going on with me, but deep down I knew that the direction of my life had to drastically change. As a teenager in France I fainted often, I lacked energy, I was dizzy, I did not talk much and cried a lot when alone. Underneath my happy mask, I was always unhappy. I was unconsciously afraid to end up with mentally disturbed people: I had tasted such a group for a few months already, and it had been disastrous for me. When, in a French university town, I started a relationship with an American young man, I took the opportunity and emigrated alone.
Did you find what you were looking for in the U.S?
At first it was great being in the US: when an autistic person is in their 20s, as I was, it sometimes seems to make the autistic person believe they are no longer “autistic”. I abruptly stopped fainting. With so many cultures, it was easier to be different. People often thought my differences were due to the fact I was a foreigner. I could switch from one job to another as I pleased (kind of…). It took a few years and the birth of my son to find out that in fact it was more of the same– inside I had not changed, I was still hypersensitive to stimuli, easily upset and depressed; it was only my external environment that had changed.
Do you notice any differences between the countries in terms of autism acceptance and support (or are any differences due to the changing times rather than locations)?
What a great question: change of times and change of locations are so intertwined! It seems to me that in a country where many different cultures have to live together, as in United States, differences have to be more accepted so people can cohabitate together. However, it is telling that this country is not that great for an autistic undiagnosed person. I find it interesting that for the exact same number of years (23), in neither countries was I formally diagnosed. Nowadays I live in California and most people here seem to be somewhat educated about autism. The last 3 times I visited France, I was extremely impressed by how the autism French community is growing big and fast….I am now most welcomed there as an autistic person! In the end, whether in United States or in France, misunderstandings about my autistic condition always remain rampant.
What are some of the specific sensory challenges you experienced when you were younger (or still struggle with today)?
My first memory is of the smell of fresh paint on my bed. Noise and smells were always a problem for me. I tried to avoid noisy environments, going out alone, even under the rain because then it was sure to be less crowded, hiding behind the pier in my home town. As a teenager I fainted a dozen times, and I often said that it was due to the noise, which made people think I was crazy. My book is filled with examples of sensory challenges. In hindsight, it appears that these sensory challenges were worse during adolescence and menopause (for women): From this I conclude that hormones play a major role in an autistic person’s life.
What is the significance of your memoir title: Being Seen?
My memoir is titled “Being Seen” because for a long time -and even nowadays- I noticed that my autism was “not seen”. We often hear nowadays about the “invisible disability”, what is not seen. When my first article was published, about 10 years ago, when I was still undiagnosed, it felt as if I had broken the sound barrier, I was finally “seen”. There were times in my life where I felt like an unseen seed, buried deep inside the earth, not having the proper nourishment to allow me to flourish.
What mistakes do you see neurotypical autism advocates make?
I wrote in my book that I feel that if anyone is going to claim that they are an “autism advocate” (or a doctor for that matter), it might be helpful to require that this person lives constantly with one autistic young person for at least 6 months: autism is often so perplexing, it is hard to fathom. Sometimes neurotypical autism advocates adopt a know-it-all attitude about things they don’t really comprehend, much to the dismay of autistic people themselves (and possible harm to younger autistics). Also, autism advocates sometimes seem to confuse the right to give opportunities to autistic children with the right to let them behave as one pleases in all cases. Finding the right balance here is not easy. By and large, it seems to me that many neurotypical advocates about autism now know to tread lightly, they are often aware that they may not know all about the autistic person in front of them.
What’s the best thing parents can do for their young (and older) autistic children?
I hope all parents of autistic children have access to ways to learn and educate themselves about autism. For example, in many United States locations, food sensitivities and the way to address them are common, so is limiting sensory input, etc. I often think too that only a complete lifestyle change might help the child, away from aggressive stimuli and in a calmer environment. So much patience is required; it takes so long, such carefully tailored approaches and many unexpected turns, for the autistic person to grow…but I beseech you, the parent, believe in your child: she might grow into someone you never imagined. I still am amazed by how much I have changed overtime, something I attribute in major part to my intense meditation practice.