MY PATH TO PROPER FORMAL AUTISM DIAGNOSIS

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:

1. Extraordinary sensory challenges; my already abnormally low threshold sensitivity to noises, lights, smells, etc. went up the roof at that time.
2. Adrenal insufficiency and weakness.
3. 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:

1. 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.

2. 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.

3. 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.

4. 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.

New Meditation Group

I am back to blogging, I apologize for the delay. I had technical problems that were slow to be resolved due to….various fears, and what I am afraid that I must also call “procrastination”.  Let me be humble!  It amazes me these days how childish we all are. Growing up seems to be what life is about.  Now in my fifties, I don’t think I have accomplished much by finally realizing this.

It seems to me a blog is a place to write what interests you in your everyday life: many of us encounter things that might be of interest to somebody else, though not all of us are lucky enough to be able to “blog”, or care to tell, or are allowed to do so, or…

Topics that most interest me these days are:

1. My Zen practice and what investigations transpire during and after it,
2. Spreading the word about my book and all the interesting encounters I have because of that (its title is Being Seen, website anlordavin.com),
3. Working at the freelance translation gigs from English to French or vice versa — that I first have to find, a challenging task.

I am not sure whether any of these subjects are interesting to you, which is exactly where I wonder about the validity of the “blog trend” of these days.  What matters most to me is that you are well, and I am not sure that my blogging will help any of that…  I must have faith that maybe, if you are like me, there is something in what I read that will be of help somehow.  Since my zen practice is the heart of all of my activities, that is what I will talk about here.

BOOK LAUNCH

When does a book launch start and when does it end? So far I have given three book launch events…without having the actual book in hand! They were on April 2, 3rd and 10th. The physical copies of my book arrived at my place one day after the last event! I felt so bad for having all the people come to hear about my book …with no book on hand! I learned the hard way that when a book is about to be published, unexpected delays can –and did- happen at every step of the process.

For all 3 events I thoroughly prepared.  First I had prints made of the book cover image, both in “flyer-card” and in business card format.  To prepare those took a long time on the computer and then in transportation and printing. This also cost me what is for me a “pretty penny”.  My partner Greg and I biked to 2 out of 3 of the events, and though the rain is very much appreciated in these rain-drought days, we were glad it did not rain much while we were on our bikes.

. The April 2^nd event was open to the public at large.  It took place at an “Autism Awareness” event held at a San Rafael church with a large room in the back. I was at one of approximately 30 tables, each presenting on autism-related subjects.  I became acquainted with the woman at the next table; she herself is the author of a book about her autistic son, and we decided to pair up in future conferences as the noisy environment made by so many people speaking together under the same roof renders such events challenging sensory-wise.  All and all it was a great little conference, with many people coming to visit.

A PAIN IN THE NECK

Hi to whoever reads this, whom I know is a person just like me, with likes, dislikes, joys, pains, etc.  This is Anlor once again. My book: Being Seen/a Memoir about me: an Autistic Mother, a French Immigrant and a Zen Student will be out on March 20, 2016, look for it on Amazon!  This post will be about a chronic pain in my neck, deeply connected to my autism, I have had for the past 16 years.

Release date and celebrity endorsements!

Bonjour,

Here is my second newsletter about my upcoming book Being Seen. [To sign up for my newsletter click here.] I hope that you will forward this letter to others who may be interested in the book; If they give me their name and email I can add them to this list. A lot has happened in the four months since the last newsletter. First, according to the publisher and unless there are unforeseen problems, the book will appear in the:                                        

                                       middle of February 2016 !

Second, I have secured 3 great “endorsement-blurbs” to appear on the back cover of my book:  

1. “From beginning to end, Anlor Davin’s captivating memoir is a compelling read. It is at once tender and turbulent, but always honest and inspirational as it winds its way through the flats and pinnacles of life with an autism spectrum disorder.” 

— Liane Holliday Willey, EdD author of Pretending to be Normal: Living with Asperger’s Syndrome and Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life

2. “Anlor Davin opened a window for me into the world of an autistic person. Her memoir, appropriately titled Being Seen is an honest, intimate sharing of her brave journey from a painful childhood in France all the way to Zen practice in California. Her courage turns misunderstanding of autism into empathy.”

— Susan Moon, author of This Is Getting Old: Zen Thoughts on Aging and The Hidden Lamp: Stories from Twenty-Five Centuries of Awakened Women.

 3. “This book is a tale of remarkable courage, giving the world a deeply personal experience of growing up within the autistic spectrum.  Unflinchingly honest, it gives us a perspective from human beings whose central nervous systems respond differently to the physical and social environment.  There is much to learn here, and much compassion to be gained by reading this journey.  Thank you, Anlor, for the strength to write this book.”

— Richard Mendius, MD, neurologist, coauthor of Buddha’s Brain: The Practical Neuroscience of Happiness, Love & Wisdom.

My blog Autizen.com will give you more information and keep you updated about the book. The blog is written in English and translated (by me) into French. If you are French, please be aware that the book itself is written in English, at this point I do not know if it will be translated into French.

Anlor (Anne-Laure) Davin

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here is the first newsletter, written four months earlier:

Bonjour,

This is my first time using a newsletter program. I have decided to use it in order to let you know about my upcoming book and in the hope you will forward this letter to others who may be interested in the book. If you or people you know are interested, please give me your name and email so I can add you to the list. My book is a memoir written in English (I am a native of France) and barring editorial changes, its title is “Being Seen”.  The book is about my life on the autism spectrum until I was formally diagnosed at the age of 46.  It is informed by my Zen practice of the last 15 years and includes a part about my life in France, where I was born and raised until I immigrated to the United States at age 23. My publisher is presently editing it and describes it as “insightful”. Once I have further information about it I will keep you posted.

In the meantime, my blog Autizen.com will give your more information and keep you updated about the book.  This blog is written in English and translated (by me) into French.

Anlor (Anne-Laure) Davin

Letter to Parents of Autistic Children

In 2011 I wrote a Letter to Parents of Autistic Children. Almost five years letter, I thought I’d copy it to my blog. The only update I would put in about it today is in regard to the last sentence, asking parents to put limits on their autistic child’s “screen time” (that is all types of computers, IPhone, etc.) because I realize such devices are completely a part of today’s world and so it is useless to fight that off; however it is still a good idea to limit the time spent in front of screens. I know of a teacher (of autistic children) who has started a “Dark Screen Time” in his classroom: every day the students are asked to leave their screens dark for at least 45 minutes. It is apparently well accepted by the kids.

In order to empathize with all parents of autistic children, I also will add a picture of me, who was forever scowling or crying, at age 4, here at the beach with my mother and my little brother (the same picture is to be found in black and white in my book:

Dear Parents,

My psychiatrist suggested I write a letter to you, the parents of autistic children. I am an autistic 46 year-old woman. I have a 19 year-old child. A disciplined zen practice has allowed me to survive the terrible chaos and pain that autism is, and along the way I have learned to better (if imperfectly) express myself so that non-autistic people can understand some of what I experience.

Though at times I display unusual behaviors and my limitations are plainly visible, I am fully endowed with the longings and desires of human beings. I am a human being. As a child I was not labelled autistic and so “normal” ways, for example proper behavior and politeness, were expected of me. It may have taken me longer than most to learn these and I learned in unusual ways, but I did fulfill the expectations so that as an adult I was able to live independently. The way I see it, not to expect such “normal” behaviors is among the worst things that can happen to an autistic child exactly because some normal behaviors are the door to independence. Lacking them also results in our withdrawing from people we do not trust.

I have paid a great price in order to appear  normal. I have hidden my chronic agitation at all cost and some of this suppression now manifests as physical pain. I sometimes think of a human being as like a body of water: Some bodies are calm, some are agitated. The cause of this agitation might be invisible, as from a deep underwater source. As I experience it the longer an autistic person hides his/her true nature, the more the nerves “wear out” and become tense. By the time my son was born, on top of much emotional anxiety, bipolarity and such, my body became even more painful, until a few years ago I could hardly function any longer.

I do not want to be seen as crazy. I am not: I am only different. I may well solve a particular life problem in a different way, one that might take longer but in the end may also be more thorough or even more valuable. If you believe I have more limitations than most others, I suspect that is not true. Even as a young child when I could not express it, I would sense others’ smugness and it would cause me to shut off. We all have limitations. Others’ limitations may not be as visible, but they have as much reality as mine.

I have found that ‌sensory issues are often the deep “underwater” source of my agitation. I once wrote, ‌”This is how the world appears to me:

‌. Traffic noise, slamming doors and ringing phones, people, loud laughter, TVs ‌and radios

‌. Fragrances of all artificial kinds, exhaust fumes, laundry detergents

‌. Glints of moving metallic objects and scores of abrasive lights”

As a child I did not understand this. I even believed I liked the special effect my dad’s cologne had on me!  I have made up the word to desribe what makes me ill: AGRUAR — for AGgressive, RUshed, ARtificial. TVs, computer screens and all such devices fall into this category. Even though your child is swallowed into them, please consider protecting her/him from too much of them. Offer your child the gift of outdoor activities! Nature has been a true solace to me all along.

Thank you for taking the time to read this, and I hope it helps!

Anlor Davin

Change in my blog’ structure, video of my partner and me, my book, Tassajara and Autsit retreats

To read my blog in French, click here.

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Some of the challenges I encounter in translating my posts are as follows: the blogging platform I use does not directly allow me to type French accents (or I have not found how to do this), and so I type my French translation first in Word, then I copy and paste it in the blogging platform, inserting the pictures at the correct place. After this first pass comes the many edits needed to completely correct the initial translation.  I often find an error myself when I reread my post several days later, or French friends whose help I enlisted tell me about them.  French grammar is one aspect of these edits. Then I often find that I have translated a sentence too literally according to its American-English wording.

Thus I have decided that in addition to the many books I read in English, I ought to read some in French. However I do not have the money to buy books and there are very few French books to be found in my little town’s public library. To be fair, this library is a great resource in all other areas; I simply could not have done without it when I was so ill that just dragging myself there was so very difficult. The staff there was often beautifully supportive, and in many other ways than pertaining to books! Fortunately for me, a Parisian friend has come to my help: She sent me a link which allows me to read online French books whose authors have been dead for more than 70 years. Thus I immediately found myself poring over one of the first classic French book I read as a child, and I find I am still moved by it!  My mother also has told me she would mail me some French books for my approaching birthday; being also a voracious reader she has too many of them.

A few months ago, my partner and I were filmed by a crew of AASCEND(.org) members and a 15-minute-long video emerged.  It is called “Autism in France”, as in it my partner Greg and I talk (in English) about the experiences we had when we visited four autism organizations in France during our visit there in the spring of 2014.  We had already presented the material content at an AASCEND meeting last year upon our return. The video can be viewed at http://youtu.be/vMVcZdHezsY.

5 HINDRANCES, POST # 5, 5 HEADGEAR ITEMS

Last month I went to a three-day women’s retreat which had a big impact on me.  It was led by two Zen teachers and the thirty or so women who attended mostly remained in silence and sat zazen (the upright sitting Zen meditation) but not always as we shall see.  Here is a picture of the retreat, when I was the chant leader for our group.

Integrated skillfully into these serious proceedings, the weekend also included a bit of playfulness. Several times during the three days we were divided in smaller groups to act out skits, complete with props and written prompts. One evening we sang a few rounds together. Encouraged by a French-speaking Vietnamese friend, we also sang together a classic French tune, “Colchiques dans les prés”.

The topic of the retreat and of the skits was “The Five Hindrances”, Zen parlance for various forms of confusion resulting from challenges, even small ones. The Buddha called these states “hindrances” since they hinder the mind’s capacity to clearly assess what’s happening. The five hindrances are:

. sensual desire (and/or “desire for sense experience”)

. ill will/anger

. sloth/torpor/laziness

. restlessness/worry

. (corrosive) doubt

GREAT IS THE MATTER OF BIRTH AND DEATH

This fourth blog post is dedicated to KALEB and GENE, the two individuals in my close circle who died last month. In many Zen monasteries, there is a block of wood called the Han. It is struck with a mallet to call the monks to zazen/meditation.

The following verse or one like it conventionally is written on the Han, and in some ways it is the most central text of Zen.

Kaleb and Gene’s deaths brought it to my mind with special poignancy:

Great is the matter of birth and death,

Life is fleeting. Gone, gone.

Awake. Awake each one!

Don’t waste this life!

For the past four years, with much help, I have been fortunate to have the renewed strength to go out, and thus I was able to meet several times with Kaleb and Gene. Getting to know them a little was a real honor.

Their deaths make me vow to never forget how it is such an honor to meet any one; their deaths leave a void in the fabric of life and those who lived with them longer especially can feel this; I often hear their grief and wish to let them know I am with them. Many people helped me to meet Kaleb and Gene, and it would be impossible to thank them all here: an entire life brought me to where I am today.

MEDITATION IS FOR ALL AND TRAUMA HAPPENS ANYWAY

Last month, AASCEND, the San Francisco-based support group for adult autistics, parents and professionals organized its eight conference. The acronym stands for Autism Asperger Syndrome Coalition for Education Networking and Development, at AASCEND.org

                                            http://www.aascend.org/?p=1066

Among many interesting presentations (which are reported upon with pictures on its website), for the first time in my life I led a meditation breakout. A friend, Tom, helped me lead it as my partner, Greg, the co-president of AASCEND was busy with the many other things happening that day at the conference.

A parent asked me a question I had heard several times before: “I want my autistic child to meditate, how do I get her/him to do this?” At the conference I told this mother, as I had told the others before her, that if my parents had asked me to do such a thing I most likely would not have done it. After the conference I realized there is much more to this question and that there is a better answer. If ever the mother who asked about her grown-up son happens to read this, following is what my answer would be. I have a son and he did sit down to meditate with me several times. I believe that is the key: if you want your child to meditate you need to do it with her/him.