All our hearts are going out to the people of Ukraine at the moment, but for the neurodivergent community, the current state of warfare with Russia is even more challenging.
Many autistic individuals with high support needs are trapped in the Ukranian capital Kyiv or facing the situation of fleeing with little to no assistance from their country or loved-ones.
Ukraine has limited support services for people with autism, although more have opened up in recent years. In the current state of emergency though, most are unavailable or have been violently targeted—with Russian forces attacking orphanages, schools, and even children’s hospitals.
How are children with autism coping as they adjust to unstructured, frightening circumstances? Who will look after the most vulnerable if their caregivers lose their lives? What will happen to autistic individuals who meet people they cannot trust after escaping the war? Not forgetting the vulnerable people living in Ukrainian orphanages or institutions who are cut-off from family contact—the ones who are being left behind. There are so many terrifying questions and most of them remain unanswered.
No home, no food, no medicine
The media has shared the story of one Ukranian mother, Olena, who managed to flee the bombing of her home with her autistic son, Maksym. Sadly, the family had to leave Olena’s husband behind.
“I came with my son, my husband stayed in the war, to protect the country in the Mykolavic city,” said Olena. “[My son] understands everything. He is very worried, very much.”
Olena and Maksym are facing an uncertain future without access to the support systems and resources Maksym so desperately needs. “There is no food, there is no medicine,” said Olena.
Olena’s family are just one example of the many who find themselves away from their homes, their personal belongings, and, most tragically, their loved-ones.
Autism in Ukraine
Until 2014, autism spectrum disorder (ASD) was not a recognised diagnosis in Ukraine and many children were labeled with “mental retardation” or an intellectual disability. Some families resorted to institutionalizing their autistic children, leaving them in hospitals or care homes. Children were also abandoned in orphanages by parents who did not know where else to turn.
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Thankfully, Ukraine has come a long way in its understanding of people on the spectrum. New government policies over recent years have encouraged inclusion and education of children with special needs, and training for professionals has increased. Autism awareness events have also taken place, such as the 2018 press conference for social project Your Limitless World by Acino.
Despite this, a survey in 2021 by international non-governmental organization Child for the Future revealed there are still issues around autism resources in Ukraine. The top five problems identified by parents were:
- 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
Initiatives helping autistic individuals in Ukraine
So, in a war torn country where autism resources were limited even before the troubles with Russia began, what is being done now to help?
The European Council of Autistic People and Autism Europe have released a joint statement calling for humanitarian protection of Ukrainians with autism.
“Autistic people and their families are largely invisible and underserved by humanitarian aid dedicated to supporting the people of Ukraine. We—Autism-Europe and the European Council of Autistic People—are calling on all political leaders, public authorities, and humanitarian actors to address the urgent needs of Ukrainian autistic people, including refugees,” the statement reads.
The organizations explain that autistic people should be protected by States Parties following their obligations under the UN Convention on the Rights of Persons with Disabilities, in particular, Article 11 on situations of risk and humanitarian emergencies; and the UN Security Council Resolution 2475 (2019) on Protection of Persons with Disabilities in Conflict.
The statement calls on political leaders, public authorities, and humanitarian actors to urgently help autistic people in Ukraine in the following ways:
- They must benefit from the necessary humanitarian aid, and be meaningfully included and consulted through their representative organizations
- Autistic people living in institutions and orphanages must not be abandoned and should receive adequate protection and be relocated. Refugees and their families must benefit from support through community-based services
- They must be protected from violence, abuse and ill-treatment
- They must have full access to basic services including water and sanitation, social support, education, healthcare, transport and information
- They must have access to (online) support services to help them cope with the high level of stress they are experiencing. These services should preferably be provided in Ukrainian
- They must be provided with accessible information—including in easy-to-read and augmentative and augmentative formats—notably about safety and assistance protocols, evacuation procedures, and access to support. Adequate accessible information should also be made available in Ukrainian in countries welcoming refugees
- Welcoming countries must make sure that all relevant stakeholders are aware that some refugees might be autistic—even if many do not have a formal diagnosis. They must have access to information from autism experts and organizations. Autistic refugees and their families must be provided with the necessary support and information about disability rights
Autistic people living in the UK are also doing their bit to help people on the spectrum in Ukraine. For example, young people based at Options Autism residential facilities in Wales are making teddy bears and writing letters for young people in need. British mother Dr. Annie Clements, Founder and CEO of non-profit Autism & ADHD has also started a fundraiser to produce cards with basic information about autism for front-line professionals.
“We cannot begin to imagine how difficult it is for all the Ukrainians trying to travel at this horrifying time, but when you are also managing an autistic/ADHD child or adult as well, it just adds another layer of trauma, and it genuinely is keeping me awake at night,” said Dr. Clements.
It is almost unbelievable to think that places of safety for children with disabilities, such as schools and hospitals, are being targeted. Ukrainian families fought hard to get rights for their autistic children and, after so much progress was made, they now have no place to learn, no place to turn to for clinical advice, and no home to feel safe.
It is time for charities, organizations, and individual autism advocates to join together. As Ukraine continues to be invaded by Russia and so many families face an unimaginable plight, we must advocate for them and urge those on the ground to identify the individuals who are most in need.