The survey participants named sustainable state support and tolerance of society as the main advantages of the EU countries. However, in their opinion, Ukraine has a wider range of educational and medical services and more accessible staff.
The survey is part of a broader study of the opinions of Ukrainian families with children with special needs who were forced to leave Ukraine in 2022 due to large-scale Russian aggression. Its goals are to understand how Ukrainian families with autistic children who have been living in the EU for a long time assess the provision of special needs for their children abroad; what challenges and opportunities they faced during the forced evacuation; how their assessment of Ukrainian infrastructure for the needs of autistic children has changed over time, etc.
The survey was conducted in March-April 2023 through an online questionnaire. More than 70 families, mostly from the eastern and central regions of Ukraine and Kyiv region, took part in the survey. In the spring of 2022, they were forced to leave their homes and the borders of Ukraine.
The biggest problems with the outbreak of war for the majority of respondents were the psychological factor (71.2%), uncertainty of the future (67.6%) and the inability to plan (66.5%). At the same time, “the sudden disappearance of services and therapists for children” (49.3%) was rated as a problem even more than logistical, financial or medical problems (48, 46 and 38%, respectively), although these were extremely acute and unpredictable during the emergency mass evacuation. However, for families with autistic children, it is the external factors that support the child that always play an extraordinary role, the value of which can hardly be overestimated.
The same trend is confirmed by the answers to the question of what factors were the biggest challenges for people in the first weeks of their stay in another country. In addition to the purely psychological factor (76%), the second and third places are occupied by the lack of specialists and information to support the child (71 and 67%), and only in fourth place we see a factor that should by definition be in a higher position – the language barrier (54%). The lack of understanding of local bureaucracy ranked fifth (53%), while cultural and social differences, along with living conditions and food, were the least challenging for Ukrainian citizens. In these areas, as the experience of many other Ukrainians shows, there is a natural and rapid adaptation to the rules of living in the EU.
However, in rare cases, the situation can be quite different. For example, there is a case where the loud behavior of a child with autism during stress caused concern among neighbors. They called the juvenile justice authorities, whose representatives, without going into much detail about the evacuation and without understanding Ukrainian, told the mother that by law they had the right to take the child away from her and place him in a separate place of residence. Needless to say, the whole family was shocked by this experience. This particular situation was eventually resolved peacefully, but unfortunately, such things do happen and we need to talk about them.
The condition of Ukrainian autistic children during the year abroad has undergone various and drastic changes, mostly negative – anxiety (52%), regression (30%), sleep and eating disorders (28 and 24%), and a setback in skills (19%). Of course, it is gratifying to see progress (48%) and some changes for the better (6%), but only parents know what they and their children have gone through to be able to talk about positive results. Indeed, the very nature of these indicators is extremely unstable: any pause in support for a child can lead to degradation and a setback in skills.
In general, progress is noted by those who managed to continue or start classes with their child, while regression is noted by those who lost the opportunity to receive the usual services and facilities.
In this context, by the way, there is a certain pattern that should be taken into account when evaluating the survey results, and this is the place of residence and social status of respondents in Ukraine. After all, the opinions of, say, residents of large Ukrainian cities with developed infrastructure for autistic children, opportunities and a certain level of income, and those of residents of villages or small towns where this is not the case, sometimes differ greatly, since the former at least have something to compare.
The majority of respondents mention financial instability, healthcare and language barriers as their most pressing problems in their host countries. Bureaucratic obstacles, lack of information about child support services, insufficient professional level of specialists, and problems with access to medical services and medicines are considered significant, though less tangible, challenges.
At the same time, almost all respondents, regardless of their country of residence, noted that for the first time they felt sustainable, structured and systematic state and municipal support, as well as extremely high tolerance of society and institutions towards special children. Judging by the survey results, Ukrainian society still needs to work hard and thoroughly in these areas to achieve these indicators.
At the same time, the strengths of Ukraine, which a significant proportion of respondents did not see abroad, are: accessibility and a wide range of services and facilities, a high level of specialists, strong parental organizations, the ability to influence processes at the community level, access to medicines and information, inclusion, and financial accessibility of services.
The overwhelming majority of respondents, giving their generalized assessment at our request, are inclined to believe that Ukraine is better off than many EU countries for autistic children of preschool and primary school age, and in EU countries for children over 10 and adult autistic people. The two factors that play a key role in this area are sustained government support and public tolerance.
Half of the respondents cannot say for sure when they will return to Ukraine, although the main reasons are clear: Ukraine’s victory and the end of war. While 5.1% have already decided not to return, 10.5% are planning to return home in the near future.
- For children up to adolescence, Ukraine already has a wide, professional and accessible range of professional services and support services for autistic children and their families. These services are provided with minimal bureaucratic support, which prevents people from waiting in lines for years.
- European countries demonstrate a higher level of meeting the needs of adolescent and older children.
- European countries demonstrate a high level of tolerance towards all people with developmental disabilities without exception, in which a person with a diagnosis and their family are not isolated, but rather actively participate in social life and communication with other members of society on an equal basis, according to their characteristics, and with unconditional state support. Ukraine still needs to work on this approach.
- The attitude of Ukrainians who have been living abroad with autistic children for a long time toward the support system for people with mental disabilities in Ukraine has improved or remained unchanged over the year. This speaks volumes in favor of Ukraine.
“Obviously, we must do everything possible to make the positive experience of European total tolerance the norm for Ukraine,” comments Inna Sergienko, founder of the “Child with Future” NGO. – “Moreover, we have something to be proud of, and the year of war has proved it to everyone – we have to share with Europeans the principles of the national system of support and services for autistic people, its quality and accessibility, experience in implementing a high level of services, etc.
The experience gained by millions of Ukrainians over the past year, for which Ukraine has paid and continues to pay a high price, is invaluable, as is the support of citizens of the EU, the US, and other countries. We have no moral right to devalue this experience; we must analyze it, use it, and implement it in the Ukrainian reality. For the sake of the memory of the victims, for the sake of future generations and our common European future.
We are sincerely grateful to the governments, civil society organizations and ordinary citizens of every country that has become a second home and a safe haven from the horrors of the war unleashed by Russia in Ukraine for all Ukrainians who were forced to evacuate.
We would also like to thank the participants of the survey and wish their families good health, prosperity and a speedy victory for Ukraine!
We hope that this information will be useful for all stakeholders and institutions involved in supporting children with special needs.
“Child with a Future is a Ukrainian international non-governmental organization that has been working in the autism area since 2009 and has been a member of the board of “Autism Europe” since 2012. In its activities aimed at supporting and protecting the rights of autistic people of all ages, the NGO is guided by international experience and best practices. The IGO has more than 10 ongoing projects in Ukraine, is the initiator of parliamentary hearings on autism in Ukraine, the founder of several powerful communication platforms, including the annual International Practical Autism Conference (IPAC), a participant in the world’s most renowned specialized autism conferences, etc.