Warning – Some people may find the following footage, video and images destressing. For this reason please use caution if viewing around children. Please scroll down to read more.
The Forgotten people of Ukraine – The “Invalids” AKA autistic individuals.
My heart goes out to the people of Ukraine. But, my heart aches for the disability and neurodivergent community the most. Many disabled individuals are either still trapped in the capital or fleeing with little or no support. Not just forgotten, but proving to be a logistical nightmare amidst the the urgency to evacuate not only the capital Kyiv, but surrounding regions.
Ukraine has made significant progresses in recent years in years. With their attitudes and understanding of the neurodiverse and disability community. I do fear however that the current crisis will have lasting ramifications on the disability community the most.
Olena and her autistic son Maksym are considered “lucky” to have fled the bombing of their home. Olena has had to leave her husband behind. They now face uncertainty. With no where to live and no support, Olena and Maksym face a difficult and uncertain future.
” I came with my son, my husband stayed in the war, to protect the country in the Mykolavic city”
An uncertain future exacerbated by lack of support and understanding. autistic, sensory and medical needs. “There is no food, there is no medicine”
“He understands everything. He is very worried, very much” Olena talks about her son and her fears.
Autism in its infancy in Eastern Europe.
As recently as 2014 Autism was not a recognised diagnosis in Ukraine. Forced to abandon their children in hospital or care homes, families faced the impossible. They struggled financially often finding themselves without work in order to care for their children full time. Autistic children either received a diagnosis of Mental retardation or Intellectual disability. In the 2014 documentary “Not forgotten, the untold told story of Autism in Ukraine” Written by Tom Saxon, Dr Sandra Redden and Matt Blick it told the horror and frustration of families living with Autism in Ukraine. These families referred to their autistic and disabled children as “Invalids”. Recalling the frustration and advice they had received upon diagnosis.
Not forgotten, the untold told story of Autism in Ukraine
One family recalled being told to leave their daughter in hospital and visit her on weekends. The family found themselves in financial hardship and out of work. Entire families forced into isolation. Forced into silence.
However, Ukraine has made significant progress with how Autism is viewed and treated. In 2018 Steffen Saltofte, CEO Acino, and Eugene Zaika, Ukraine and CIS Head Acino took part in a press conference dedicated to the social project ‘Your Limitless World’ by Acino, which aims to help people with autism spectrum disorder. It also aimed to improve the quality of their lives. The social project runs social events and activities that support children and families. Fundamentally, to address autism and provide supports for both families and professionals.
However, a recent survey in 2021 showed things were still dire in Ukraine.
Top 5 problems of parents-2021:
- Extremely low level of support from the state.
- Lack of training programs for parents and psychological support for families raising an autistic child.
- Severe deficit or complete absence of qualified professionals on the autism spectrum in small towns and villages.
- High cost of private services for therapy and rehabilitation in conditions of lack of an alternative from the state.
- Lack of competence of pediatricians and family physicians in identifying autism and informational support for families.
SO what now?
We can only continue to advocate and urge those on the ground to identify families in need of support. To encourage them to use their voice. To continue to make noise and demand assistance and support. To forget them is not an option.
