The war affects all Ukrainians, and families with autistic children are no exception. The results of the latest survey are more complex and deep than ever. They demonstrate how difficult it is for Ukrainian families with special children to live in the conditions of the war. And now we, Europeans, have many more challenges in common than we could have imagined before February 24, 2022.
These conclusions follow from the annual survey conducted by the “Child with a Future” NGO on March 29-April 21, 2024. This time we surveyed three groups of Ukrainian citizens: 1) those who have remained in Ukraine since 2022; 2) those who were forced to leave and have already returned; and 3) those who left and remained abroad. This methodology was chosen to better and more hear the opinions of people who are forced to live (or have lived) in different countries, languages, and cultural environments. Their experiences have a significant impact on their survey responses.
The full version of the new survey is available on our website, Facebook, and Telegram.
The profile of the survey participants is as follows:
- 77% are people living in urban areas of Ukraine, where the infrastructure for supporting special children is much better than in rural areas.
- 94% of them are parents of autistic children, and a quarter of the respondents have the status of IDPs.
As for the respondents who temporarily reside abroad, half of them are in Central and Eastern Europe, and half are in Western Europe. All of them have official refugee status.
Regarding the age of children whose parents participated in the survey, for all categories of respondents, more than 60% are children under 14. At the same time, families living in Ukraine have mostly younger children (under 10 years old), while more than 30% of families living abroad have older children – 14+.
As our last survey was conducted in April 2023, we first wanted to know whether the overall situation with autism in Ukraine has changed over the past year. About 60% of people living in Ukraine said that they had not felt any changes, about a third saw a deterioration, and every tenth saw an improvement. From abroad, our citizens see this situation differently: “has not changed” – 37.4%; “has changed for the worse” – 35.3%; “for the better” – 27.3%.
When asked about changes in the child’s condition over the past year, all respondents, regardless of their place of actual residence, answered almost identically. All of them noted that the biggest problems of their children are:
- anxiety;
- sleep disorders;
- eating disorders.
However, three times as many parents noted progress in their child’s development as regression, and about 15% of respondents reported no changes.
As for the factors that directly or indirectly caused the above changes and became the biggest challenges for Ukrainian families over the past year, the answers were divided, although not in all respects.
Thus, the TOP-5 challenges for the first category of respondents (those who stayed) were (the sum of the two highest scores):
- Financial difficulties – 91.3%.
- Lack of services and staff for the child – 82.5%.
- Psychological factor – 82.4%.
- Problems with nutrition – 73.1%.
- Military actions and life threats – 55.5%.
The inability to plan and bureaucratic obstacles are in sixth and seventh place, accordingly.
The least important problems mentioned by these respondents are logistical problems, lack of information, and problems with medicines.
TOP-5 challenges for the second category of survey participants (those who have left and already returned) are as follows:
- The inability to plan – 50.4%.
- Military actions and life threats – 48.9%.
- Psychological factor – 42.9%.
- Financial difficulties – 33.4%.
- Lack of services and specialists for children – 32.2%.
In sixth and seventh place are problems with nutrition and bureaucratic obstacles.
The least important problems for this group of respondents are problems with medicines, lack of information, and logistical problems.
TOP-5 challenges for the third category of respondents (those who are still abroad):
- The psychological factor – 97%.
- Inability to plan – 82.2%
- Different language environment – 70.8%.
- Lack of services and staff for the child – 62.3%.
- Military actions and life threats – 60.3%.
Financial issues and bureaucratic obstacles are in the sixth and seventh places.
The least significant problems mentioned by this group of respondents were: nutrition, lack of information, logistical problems, and problems with medicines.
As for the level of the areas on which support for autistic children depends, the respondents’ answers were divided as follows.
The top 5 lowest scores were given to the following areas (sum of the two lowest scores):
The first category (Remained)
- Communication with peers and friends.
- Readiness of educational institutions to work with autistic children.
- The attitude of society towards autistic children in everyday life.
- Infrastructure for autistic children (except for educational establishments).
- State support.
The best scores were given by the participants of this group of respondents to such factors as accessibility and cost of medical services, professional level of specialists for autistic children, and the cost of their services.
The answers of the participants of the second category (Returned) are quite different:
| № | Lowest scores | Highest Scores |
| 1 | Readiness of educational establishments | Cost of services for autistic children |
| 2 | Availability of services | The professional level of the staff |
| 3 | State of communication with peers | The level of support from compatriots |
| 4 | Municipal support | Availability of infrastructure |
| 5 | State support | Cost of medical services |
We also asked the respondents to assess the level of support for autistic children in their countries of residence, and obtained the following results:
| № | Lowest scores | Highest Scores |
| 1 | State support | Cost of services for autistic children |
| 2 | Availability of services | Accessibility of medical services |
| 3 | Availability of infrastructure | Cost of medical services |
| 4 | The professional level of the staff | Public attitudes towards autistic children in everyday life |
| 5 | Municipal support | Readiness of educational establishments |
Citizens of Ukraine who remain abroad with their children assessed the state of affairs in their country of residence:
| № | Lowest scores | Highest Scores |
| 1 | State of communication with peers | Readiness of educational establishments |
| 2 | The level of support from compatriots | Public attitudes towards autistic children in everyday life |
| 3 | Availability of infrastructure | Municipal support |
| 4 | Availability of services | State support |
| 5 | The professional level of the staff | Cost of medical services |
It is interesting that the answers in this part of the survey, as well as in the assessment of the second category of respondents of the autism support system in their countries of recent residence, were distributed most evenly compared to all other questions in the questionnaire. This can be explained by the fact that this group of respondents has been in and assessed the situation in different EU countries, where the level of support for autistic children is also known to be different. This is a rather unique situation that requires further study, as we have the numbers but not the reasons behind them. In the end, the third category of Ukrainian families has changed their perception of the level of support for children with special needs abroad the most. For example, 67% of them changed their perception for the worse, and 23% for the better. The second category was not asked this question.
The last question we asked the survey participants was whether they planned to return to Ukraine, or if they were considering leaving it. The overwhelming majority of citizens living in Ukraine do not intend to leave Ukraine, although if events (russian aggression) develop dramatically, they do not exclude this possibility.
As for citizens living abroad, most of them found it difficult to say for sure: some are going to return after Ukraine’s victory, others – after the restoration of at least some living conditions or the end of hostilities at home. The option “we decided not to return” was chosen by 0% of Ukrainian families.
If we summarize and briefly present the survey results by group, we get the following picture.
Results of the survey of the first group of respondents
- In their opinion, the situation with autism in Ukraine has not changed over the past year.
- Parents observe increased anxiety, sleep, and eating disorders in autistic children. However, 44% of the children have made progress. Regression is noted by 16.4% of parents.
- The most sensitive issues for families raising autistic children are financial difficulties, lack of staff, psychological conditions, inability to plan, and safety issues.
- The level of state support at all levels (from the national to the school level) is low.
- The readiness of educational establishments to work with autistic children is extremely low.
- The level of support from compatriots is low, lower than last year.
- The vast majority of respondents do not consider moving abroad.
Results of the survey of the second group of respondents
- Half of the participants believe that the situation with autism in Ukraine has not changed in general, one-third think it has worsened, and 15% think it has improved.
- Children have increased anxiety, sleep, and eating disorders. Progress in children is noted by 38.5% of participants, regression – by 15.4%.
- The most vulnerable problems are the inability to plan, lack of security, psychological factors, financial difficulties, and lack of staff.
- The level of state support at all levels is low, educational institutions and society are not ready for autistic children, and communication with peers and friends is unsatisfactory.
- The same is true for the attitude toward autism abroad: financial accessibility of services for autistic children is offset by their physical inaccessibility; educational institutions are not ready for autistic children, treatment is expensive, there is no one to make friends with, and the level of support from compatriots is low.
- People are not going to leave Ukraine again, but if the aggressor succeeds in the country, most of them will be forced to put the question of re-emigration on the table.
Results of the survey of the third group of respondents
- Attitudes toward the autism support system in Ukraine are divided: one-third of respondents believe that nothing has changed in Ukraine over the past year, one-third believe it has changed for the better, and the same number believe it has changed for the worse.
- Children abroad also have increased anxiety, sleep, and eating disorders. According to parents, one-third of children’s condition has improved. Regression is reported by 12.1% of parents.
- The biggest challenges of the last year are the psychological factor, inability to plan, different language environments, and bureaucracy.
- In countries of temporary residence, the most difficult things are communication with peers, expensive medicines and services for autism, and low levels of support from compatriots.
- The majority of respondents consider the existing support system in the host countries to be ineffective, and attitudes towards it have changed significantly for the worse.
- The greatest needs are for medical examinations, experts, and communication, which are not available abroad.
- None of the respondents said they were going to stay abroad. However, the group members associate their return to Ukraine with the Victory of Ukraine, the end of military operations in their region, and the restoration of minimum conditions for peaceful living and child development.
General conclusions of the survey-2024 of the NGO “Child with Future”
- Among the target audience (TA) of the survey (Ukrainian families with autistic children), the most active were those citizens who stayed in Ukraine. Their answers also have the highest rates of both “+” and “-“, which indicates a high emotional sensitivity of people and is quite reasonable and understandable. They have been living in the conditions of ruthless russian aggression for three years now, the largest war in Europe since the Second World War.
- Citizens who were forced to leave Ukraine and still live in the EU are less ready to make categorical conclusions. Their answers are more moderate, but their civic engagement is much lower compared to the first two categories of respondents. On the other hand, long stays in other countries have made many of them realize that the system of support for children with special needs in Ukraine is not as weak as they thought before and that in other countries this sector has both its advantages and disadvantages. Compared to previous years, this category demonstrated the most moderate and critical attitude towards the establishments of the countries where they live.
- The TA’s activity has increased significantly compared to previous years (the indicator is the number of respondents). We want to believe that this is not an accidental mathematical category, but a social demand and the readiness of Ukrainian citizens to participate in the formation of a tolerant society.
- Unfortunately, the assessment of the state of affairs with support for autistic children in the country is low, and the readiness of Ukrainian educational establishments to work with children with special needs is even lower. Such indicators as “tolerance of society” and ” involvement of other citizens” in supporting persons with disabilities are also very low. There is an acute shortage of qualified personnel everywhere.
- Despite all the challenges and problems, parents of a significant number of children in all three categories note progress, and we are very happy for them. At the same time, the rates of anxiety, sleep, and eating disorders are the highest in the history of our surveys. The war is taking its toll, and all Ukrainian children and their families are living in such conditions every day. But we are holding on.
- Finally, respondents demonstrated the highest consensus when asked about their possible departure abroad and return to Ukraine. Everyone abroad wants to return home, and no one living in Ukraine wants to go abroad. Only intense hostilities can cause the forced evacuation of Ukrainians from their homes. We are fighting!
Presentation of the Results of the Survey-2024 in Ukrainian
Presentation of the Results of the Survey-2024 in English
Inna Sergienko, founder of the “Child with Future” NGO and Autism Europe Consul in Ukraine:
“The war has set its priorities for the entire Ukrainian society and state. Many issues that previously seemed to be of primary importance have become secondary, as the survival of the nation and the state itself is on the table. The survey is another reminder of the difficult conditions families with special children are facing today and that the war is not a reason to turn away from them. We are fighting for freedom and democracy in a free and fair country for each citizen.
On behalf of our entire team, I would like to sincerely thank the governments, civil society organizations, and ordinary citizens of each country who have sheltered Ukrainians from the aggressor and the war waged by russia. I would like to thank the participants of the survey and wish them, all of us, all our friends and partners a speedy victory and a peaceful sky. And, of course, I want our information to be useful for all stakeholders who are concerned with the mental health of children in Ukraine and other countries.
REFERENCES:
This survey was conducted through an online questionnaire. More than 500 families took part in it, most of whom currently live in Ukraine, and a smaller number in EU countries, where they were forced to leave due to russian aggression in 2022. “Child with Future” is a Ukrainian NGO based in Kyiv. It has been supporting and protecting the rights of autistic children since 2009 and has been a member of the board of Autism Europe since 2012. The organization regularly holds surveys of citizens whose lives and professional activities are related to autism and other developmental disabilities. Although they are not representative from a sociological point of view, this approach allows us to obtain generalized estimates and share them with the public.
