The article below was written by autistic author Anlor Davin. It was originally published on her website and is reprinted here with her permission. Anlor Davin grew up on the West Coast of France and immigrated to the United States in her 20s. She has written about some of her experiences growing up undiagnosed in her memoir Being Seen. She also shared shared some of her experience as an autistic French immigrant to the United States in a recent interview for this blog. In this article, Anlor sheds light on the difficulty of living without a diagnosis and how we can support others with autism throughout their lives.
My path to a proper formal diagnosis was a long and winding one, which unfortunately seems to be a hallmark for many autistic people. At that time I was exhibiting several unexplained severe symptoms. 3 major ones where:
- Extraordinary sensory challenges; my already abnormally low threshold sensitivity to noises, lights, smells, etc. went up the roof at that time.
- Adrenal insufficiency and weakness.
- Unbearable physical pain in my neck, which radiated down my left shoulder and back, to the point of limping at times of acute stress.
I lived the first 23 years of my life in France, at that time not many people knew about autism. To be honest I still am nowadays very glad that I was not diagnosed as a child as thus I was not put away in an institution, and I was given the opportunity to build an independent life.
It is ironic that it took another 23 years, exactly the same number, for me to be diagnosed in United States! To explain this in a nutshell, I never had much money nor proper health insurance and none of the traditional clinics were equipped for people like me –they often thought I was imagining my discomforts and often dismissed or treated me poorly. They certainly did not guess that I needed to see a neurologist, and I myself was yet ignorant of what autism is. 46 years is an extended period of time and long term damage resulted: around 2010 when I was clearly and obviously becoming quite ill, 4 things precipitated the event:
- I fainted in front of a welfare case worker and they sensed that something was amiss and had me evaluated by their own psychologist and experts.
- After this painful process was over (because by that time, each time I had to go in public the pain was terrible), they figured I should be enrolled in social security disability and they helped me do that.
- After having been on SSD for two years, the recipient is automatically enrolled in Medicare and so then I finally had a health insurance that allowed me to see a specialist.
- By that time I was just too ill to be able to advocate for myself and I was no longer able to go out alone so a Zen priest friend of mine took me to see a good neurologist. He finally diagnosed me and provided proper treatment. And a serious Zen meditation practice unexpectedly brought about a slow and steady revival.
The most apparent is the medication I started to take after being correctly diagnosed, unexpectedly helped me finally be able to sleep. I take it at night in a small dose and it is like an anchor for me the rest of the time.
However, what I really believe to be the underlying cause of all the improvements in my life is my daily intense Zen practice. I started 17 years ago and since then it never ceased to get me back on the proper track. It does not work directly, so it can be easily disregarded, but I know in my deep self how it allows the things that really help to come to me.
I am constantly despairing over the fact that parents who see me –and us- almost never believe that their own autistic child is probably a lot like us. I was only diagnosed when I was 46 years old, and this unfortunately often means that many people do not believe it as they may think autism is only for children.
Recently I was watching the video of an adult autistic who’s a famous French actor. It struck me how he said that what saved him from people not believing he is autistic was the pictures and videos he had of himself as a child: it was then obvious.
My mom did not believe I would ever amount to anything. But with a lot of help I think I am doing pretty well these days. I had a child, and raising him was extremely difficult at times, but it certainly forced me to grow up some. What you see now is the result of my intense daily meditation practice….everybody was a child at one time.
Let me shout here: let us have faith in our child, give him/her plenty of opportunities, adapt our lifestyles to a less stressful environment, and let our child go his/her different ways. It is of course always going to be a balance between freedom and guidance.
My advice to teachers of autistic children is “Engage, engage and engage!” Through opportunities the autistic child is often learning and developing, even it may take a different form and much longer. Presume competence, an autistic child is very likely to have abilities that are not being expressed right away. Let us trust. Let us also question ourselves; Nobody is BETTER than the child/adult in front of us, no matter their autism, everyone is different in their own ways.