Community News


Autism: “Not Forgotten: The Secret of Autism in Ukraine”
by Tom Saxon


My first encounter with a child with Autism was in 1985. For one year, I took care of a five year old boy for one hour a week, allowing his parents a short respite from his daily care.  I had no experience.  He was on the spectrum, non-verbal, continually stemming (the beginning of many words I would have to learn), and somewhat aggressive.  I had no idea what I was doing, but fell in love with him.  That began my journey with Autism.  I am not a specialist, but an advocate for children and parents of Autism both here and in the post-Soviet country of Ukraine.

For the past twelve years, I have been traveling with teams to Odessa, Ukraine, the last four years of which have been to work in a school dedicated to teaching children with Autism.  Our time in Ukraine has primarily been spent helping Ukrainian teachers who have little or no training and only a modicum of success with these precious children with Autism.  Our other focus has been with the parents who are full of love yet ill-equipped to relate to and help their children.  Fear, shame, exhaustion and hopelessness permeate each consultation with parents.  These parents love their uncommunicative, chaotic and incomprehensible children, though questions regarding the condition are the same for any parent in the world: Why? What did we do to cause this? Will my child get better? Is there a cure?  Children with Autism in Ukraine live secretively and alone.  Eastern Europe keeps disabilities, especially Autism, hidden from view in order to hide its cultural and individual shame.

 

On our trip in 2010, we met with one particular couple in Odessa, Ukraine who yearned for so many answers about their nine-year-old daughter.  As they began their story, they immediately dissolved into tears and shame.  They had not allowed their daughter to leave the house since they discovered she was ‘different’.  Personal and societal shame and humiliation hovered in the room like a thick smog, emotionally, painfully unbearable for all of us.
 
Questions began to arise in my mind of the state of care for these families and children.  If the global statistic is 1 in 100 diagnosed on the Autism spectrum, where are these children in Ukraine?

In 2011, I began a project entitled, “Not Forgotten: The Untold Story of Autism in Ukraine,” a documentary on the state of Autism in Ukraine.  I interviewed 20 families across Ukraine, telling the story from the parents’ point of view.  In 2013, the documentary was premiered in the Midwest and Southeast.  You can see it here: https://vimeo.com/64762953.  Password: UkraineNF.

The purpose of this project is to bring Autism in Eastern Europe into the open and eventually to have key text books and training material translated into Ukrainian and Russian.  Our first publication in Russian is HANS Physician Handbook.  We give our very heartfelt “thank you” to Linda Lee and HANS for permission to print the handbook and also thanks to Dr. Jim Peipon, Ukraine Medical Outreach, for the Russian translation.  10,000 copies will be distributed throughout Ukraine to doctors, psychologists and psychiatrists by the end of 2013.

In November, 2013, I will take a team of U.S. parents, doctors, and a specialist to speak at the Annual Conference for Psychologists and Psychiatrists of Ukraine.  This is a great honor and a greater opportunity to continue to bring the great progress we experience in the West concerning Autism into Eastern Europe, especially in Ukraine.

Raising awareness of this heartrending problem and offering some practical solutions enables those without hope or future to envision life afresh.

W. Thomas Saxon
tsaxon@cahabapark.org
205.834.2236
8/2013


Debbie Hema
Debbie Hema is a certified child life specialist for intermountain healthcare and has a Master's degree in Marriage, Family, and Human Development from Brigham Young University.  Throughout her career, she has been especially interested in how good natured humor and creativity can help children be resilient during the most stressful times of life.   A native of San Diego, California, Debbie loves the sunshine, the ocean, and learning about different cultures.  She is also the parent of a child with high functioning autism.  One of her favorite phrases is "Life doesn't have to be perfect to be wonderful!"

David Willis MD
HANS is honored to produce a brand new video with David Willis MD, Chairman of the Oregon Pediatric Society. The video is an introduction to autism for Primary Care providers and is based on the Autism Physician handbook.
Click to view.
HANS wishes to express sincere thanks to Dr. Willis for generously donating his time and facility for this video.

Autism Society of Oregon
Annual Walk 2010

Tiger's Future Drawing
Tiger Lee was the featured artist
for the t-shirts for 2010.
 
 
 
Our thanks to Loredana Lembo for translating the Physician Handbook
and Poster into Italian. Here is her commentary:
 
 

My name is Loredana Lembo, and for nearly two decades I have been active in the field of special needs.  My professional activity started with children with cerebral palsy, and with adults with degenerative diseases. This work had a focus on the communication, behavior, and the environment of people with learning difficulties, and served as a prelude to my current practice in the field of Autism Spectrum and related disorders.

Too often, when I come in contact with new families for the first time, I am being told ‘if only we were aware earlier’ and ‘if someone had told us more before’, that they could have taken in different course of action at the early stages of their child’s development.  ‘Not knowing’ usually caused a delay in taking swiftly the appropriate steps needed to diagnose, and to intervene with aim at betterment. During many years in the field of Autism and related disorders, both abroad and in my native country Italy, too many parents and caregivers shared with me their enormous disappointment of not having been aware. These deep expressions of pain and sorrow spurred me on to collaborate with the Help Autism Now Society, who offered an invaluable opportunity to make a small contribution in the shape of translating for an Italian version of the “Autism Physician Handbook” (designed by HANS). It is my profound hope that the depiction of the early signs of Autism alongside the explanations in Italian language will help towards reaching more Italian speakers with the crucial message: “Learn the signs, Act early” (CDC). That way parents can track their child’s development and act early if they have any concerns. The importance of awareness cannot be highlighted enough.

Thus far, the comments coming from medical professionals in Italy about the translated handbook read as follows: “typical symptoms of Autism are described in a clear, concise and unambiguous way through the support of precise and coherent illustrations. The set of suggestions and information are in line with the latest scientific findings and it can be of great help for all stakeholders”; … “a useful tool for family members and health professionals involved in the treatment of developmental disorders”; …“helpful to parents and pediatricians to identify alarming behavior in the initial phase of the suspected diagnosis”. These comments are tangibly encouraging thereby suggesting that the message for everyone, no matter their role as stakeholder, is clear: the earlier the diagnosis, the faster we can start intervening, the greater the chance for a better outcome for the child and parents involved. For their support and their remarkable efforts in getting a clear message out there, I thank the Help Autism Now Society and all those who support the Society. Also, I wish to extend my gratitude to all the people around us who share and spread the indispensable information contained in the Autism Physician Handbook so that its message can reach everyone.

Loredana Lembo - 10/2012

 
 
Our thanks to Akbar Baroug for translating
the Physician Handbook and Poster into Persian. Here is his story:
 
My name is Akbar Zahedi Baroug. I have a brother with infantile paralysis. If we had vaccinated plane several years ago, maybe he would have predestination. Now he is thirty five, without production, acceptable education, wife or clear future. At this time we confront with autism condition that cannot use vaccination plan, but we can early diagnose it and start to treatment appropriately.

I don’t think like “Descartes” who said, “Cogito, ergo, sum”, I am working and learning therefore I Exist.

Now, I work with children with autism and I am familiar with all approach approximately and apply to compose them in play. If they had early diagnosis maybe they would have better opportunity in their life.

 I think it is necessary that one therapist who graduate in rehabilitation fields should  study new knowledge, In fact, therapists should have a sufficient knowledge of brain dysfunction so that be able to plan a more effective treatment for that in a better way. Therefore, with regard to the experiences I had in the treatment of children with autism and close contact with them here, I have come to realize that:

1. There are no basic Screening and Referral system
2. No primary health care to ensure early identification for early intervention and treatment among autistic children.
3. There are no unique and national diagnostic Assessments like checklists, Rating Scales, etc.
4. Family and public awareness remains low.
5. family with disability children are now suffering from the quality of the health care delivery , low accountability of the health system , high rate of out-of-pocket Payment (OPT) and sometimes of high catastrophic costs.
6. The current approach toward rehabilitation and educational approaches in our country aren’t updated like developed countries. And so on.

Therefore, I got that some person try to learn and research in these fields ‘Also our psychiatrist and therapist with a lot of search and activity gain success in this field. In this regard corporation with institute like HANS and others help us to have more and better consequences.

I hope the health system here, accept more responsibility about them and as soon as possible make a beneficial referral system to screening and diagnosing them. and  Fatimah(my wife) , she has a MSC major in health management , I offer my thanks for her pure efforts in this field.

We shouldn’t shout some slogans that Child are future of our society, But they need good nurture, sufficient education and healthy psychosocial atmosphere, not a handful of words. I hope HANS and us had some opportunity to help each other in a respectful condition. Sadie Persian poet said;

Human beings are numbers of whole/
In creation of one essence and soul.
If one member is afflicted with pain /
Other members uneasy will remain.
If you’ve no sympathy for human pain /
The name of human you cannot retain!

I believe that we are part of a union body and humanity.
Finally, the translation of poster of CHAT and Physician handbook give me a fortune to take a small step for ASD’s child. I wish all child of Earth get equal chance and happily life.
  Akbar Zahedi 2011-06-15
 
 
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