Challenges, faced by Ukrainian families with autistic children during active war: a systematic review of the situation

Ukrainians have struggled with countless challenges and problems since the full scale invasion by Russia. This is the first attempt to categorize and list these issues faced by families with autistic members who are in Ukraine or are refugees across the world.

To a large extent, this became possible due to the 3-day discussion of these issues at the discussion panels “Children with disabilities and the war of the Russian Federation in Ukraine.” The event was held at the beginning of August as part of the “Parents for Early Intervention” program with the participation and support of the Commissioner of the President of Ukraine for Children’s Rights and Child Rehabilitation Daria Gerasymchuk and the UN Office for the Protection of Human Rights.

Inna Sergiyenko, Founder of INGO “Child With Future”, one of speakers at the discussion panel:

• We are grateful to everyone who made this possible. This is a very important event for Ukrainian children. This discussion started the push to collect and structure information about the problems that autistic people face during the war and evacuation.

INGO “Child With Future” team has invited their Ukrainian and international partners to join on the creation of the document. The result is “Influence of war on families with autistic members. Challenges to education and support of autistic children in Ukraine and Europe”.

INGO “Child With Future” calls for everyone to add their comments and observations in order to create a more comprehensive list of challenges faced by families. Together, we will overcome them.

The authors hope that the information will be useful to Children’s Rights Commissioner Daria Gerasimchuk and will assist in her work, helping Ukrainian citizens and autistic children in particular.

Please read the document below:

Challenges faced by Ukrainian families, educational and support centres and organisations across Europe due to the active warfare.

1. Challenges faced by families due to the active war:

• 1. Issues of families in hot war zones:
  • 1.1. Significant deterioration of living conditions: lack of water, heat and electricity supply, absent or limited access to food, drinking water, medicines and medical care.
  • 1.2. Loss of housing or inability to use it due to threat to life.
  • 1.3. Staying under constant rocket, artillery and other shelling in the absence of bomb shelters or other premises that can protect life and ensure human survival and activity.
  • 1.4. Lack of access to rehabilitation, educational, educational and other services that were available in peacetime.
  • 1.5. Increased level of stress, panic and aggression in autistic children due to misunderstanding of what is happening and inability of parents to explain it to them.
  • 1.6. Bullying of families of children with ASD by neighbours while sheltering from shelling.
  • 1.7. Sensory overload for autistic children: sounds of explosions and shots, unpleasant smells and sounds in places of forced stay, unusual food, etc.
  • 1.8. Increased stress due to the sudden disappearance of normal routine activities, as well as favourite toys and objects; overall lack of familiar items and activities.
  • 1.9. An increase in the level of stress, panic and aggression of the parents themselves towards autistic children due to the inability to calm them down in the usual way.
  • 1.10. Rapid loss of skills and regression as a consequence due to the above reasons.
  • 1.11. Lack of access to medicines for children with autism and comorbid disorders, which significantly worsens their overall condition.
  • 1.12. Development of depression, neurosis and PTSD in autistic children and lack of access to therapy and medication.

• 2. Evacuation challenges:
  • 2.1. Increased levels of stress, panic and aggression in autistic children due to the lack of understanding of what is happening and the inability of parents to explain it to them.
  • 2.2. Increased levels of stress, panic and aggression in autistic children due to difficult and life-threatening conditions during evacuation: shelling, checkpoints, loss of loved ones and relatives, unbearable transport conditions, etc.
  • 2.3. Additional difficulties for families with autistic children when looking for temporary housing.
  • 2.4. Increased stress due to the sudden disappearance of normal routine activities, meals, favorite toys and objects, etc.
  • 2.5. Absence of separate queues/windows for people with disabilities both when boarding the transport and when crossing the border. This significantly increases level of stress, risk of meltdowns, etc.
  • 2.6. The absence of separate queues/windows when registering at social welfare centers; staff being untrained to assist families with children with disabilities, further complicating consultation, document processing, etc.
  • 2.7. Lack of separate rooms for people with autism to rest from sensory overload.
  • 2.8. Lack of information in plain language and with visual support (infographics) for autistic people about the sequence of actions during evacuation, moving to a shelter, etc.

• 3. Challenges faced by refugees:
  • 3.1. Difficulties in finding housing for families with autistic children.
  • 3.2. Difficulties that arose in the conditions of being forced to stay in a different linguistic and cultural environment, as well as a completely different system of bureaucratic procedures for providing certain services that autistic children and their parents need; the absence of medical documents or the availability of only Ukrainian documents, prescriptions, etc. ; lack of understanding of procedures for making appointments with doctors, psychologists, government officials, and other specialists to address urgent needs; lack of information about current services and opportunities that can be used; problems with ordinary household issues, etc.
  • 3.3. Overload of existing European services due to the influx of millions of refugees from Ukraine, and issues with providing access to services as a result.
  • 3.4. The inability to plan and predict the stay abroad and returning home complicates the creation of a roadmap for the child’s therapy, support and education.
  • 3.5. Different orientations and approaches to working with autistic children in different EU countries, as well as their partial or significant difference from the Ukrainian system of working with autistic children, in many cases became the reason for the inability of families of autistic children to adapt to new conditions and forced return to Ukraine , where some of the services, as parents believe, are more comprehensive and effective.
  • 3.6. In many cases social worjers are uninformed about trauma in autistic children, which sometimes ends inactions incompatible with ensuring the health and support of autistic children. There are known rare cases when social workers, responding to the complaints of others, threatened mothers with the forced transfer of their children to specialized hospitals. The mothers were forced to immediately change their place of residence or return to Ukraine despite the war, in order to protect their children.
  • 3.7. Extremely unstable family financial situation: lack of resources of at least some kind of permanent income, acute shortage of jobs in the countries of forced stay or if there is a job – the forced necessity to go to work, leaving their children alone or with people who are strangers to them.
  • 3.8. Lack of full-fledged parental support for autistic children due to the forced ban on the male part of the population of Ukraine to travel abroad under martial law.
  • 3.9. Increased stress and regression due to the sudden disappearance of normal routine activities, meals, favorite toys and objects to which they are accustomed, etc.
  • 3.10. General shortage of specialists to work with autistic people suffering from depression, PTSD, neurosis, etc.
  • 3.11. The lack of available intensive correctional and rehabilitation services in host countries, which children with intellectual disabilities are used to, which worsens the state of the child’s development.

• 4. Issues of Ukrainians kidnapped or evacuated to Russian Federation:

We have no information regarding Ukrainians evacuated or kidnapped to Russia. Sine Russian Federation has been ignoring the calls for information from Ukrainian officials, the international organisations should pressure Russia into reporting on the state of Ukrainians in it.

• 5. Challenges faced by refugees within Ukraine:
  • 5.1. Difficulties in finding housing for families with autistic children.
  • 5.2. Problems with the absence of documents that remained/were lost in war zones or in temporarily occupied territories. Often this leads to the impossibility of enrolling the child in an educational institution in his new place of residence.
  • 5.3. Overload of existing services due to the influx of temporarily displaced persons. Alternatively, a lack of services in the area.
  • 5.4. Lack of state funding for rehabilitation and educational services.
  • 5.5. Lack of partner support due to men being called to the Armed Forces.
  • 5.6. Extremely unstable financial situation: lack of resources and stable income, acute shortage of jobs, or if there is a job – the forced necessity to go to work, leaving autistic children alone or with strangers.
  • 5.7. The impossibility of organizing inclusive education and socialization of autistic children due to the lack of offline education.
  • 5.8. An increase in the level of stress and aggression in an autistic child, associated with being in new or poor living conditions: lack of a separate room, a suitable place for study and rest, etc.
  • 5.9. Increased stress and regression due to the sudden disappearance of normal routine activities, meals, favorite toys and objects to which they are accustomed, etc.
  • 5.10. The lack of access to social services of day care and respite for parents often makes it impossible for parents to visit institutions and solve urgent issues, as it is extremely difficult and sometimes impossible to do this with a child.
  • 5.11. Lack of advocacy services/representation of the interests of families with people with autism by specialists; disorientation of parents in solving even elementary issues.
  • 5.12. Dependence of families on the peculiarities of the functioning of the bureaucracy. Evacuation decisions were often delayed due to the lack of necessary certificates from the place of residence, despite clear threats to the lives of adults and children.

• 6. Challenges faced by Ukrainians in temporary occupied territories:
  • 6.1. Increased levels of stress, panic and aggression in autistic children due to the lack of understanding of what is happening and the inability of parents to explain it to them.
  • 6.2. An increase in the stress level of parents of high-functioning autistic children is associated with the fear oftheir child expressing a pro-Ukrainian position to the occupiers.
  • 6.3. Lack of proper medicines, dietary products and medical care.
  • 6.4. Deterioration of living conditions: temporary or complete lack of water, heat and electricity supply.
  • 6.5. Lack of access to educational services because of their absence or because of Russian educationalprograms imposed by the occupation authorities.
  • 6.6. Fear for the child due to threats to take them to a special camp if their parents do not send her to school to study according to Russian programs.
  • 6.7. Fear for life in conditions of active military operations.
  • 6.8. Impossibility of evacuation due to physical, mental, mental and other disorders and illnesses of family members.

• 7. Challenges of Ukrainians living close to fighting:
  • 7.1. Often, the problems in cities next to occupied territories or areas where hostilities are taking place are the same: lack of basic necessities, food, water, medicine, heat and electricity supply, services, etc.
  • 7.2. Significantly limited access to specialized services and medical care.
  • 7.3. A constant threat to life
  • 7.4. Lack of any educational and correctional classes and social services.
  • 7.5. Lack of funds to pay for services that are available.

1. Challenges faced by specialists due to the war:

• 1. Being forced to work in temporarily occupied territories in accordance with Russian educational programs. Life threat for refusal.
• 2. A rapid reduction in the number of specialists in Ukraine specializing in working with autistic children due to their forced relocation outside of Ukraine. Some of them will remain in the countries of forced stay, which will lead to negative consequences for the Ukrainian market of autism specialists for a long period of time, and will negatively affect the quality of work with autistic clients in Ukraine.
• 3. Lack of funds for training and professional development.
• 4. Unemployment due to closure of rehabilitation centers and educational institutions.
• 5. Lack of funding to restore services.
• 6. A decrease in the general standard of living due to the difficult macroeconomic situation in Ukraine.

1. Issues of private and non-government educational and support services in Ukraine:

• 1. Loss of facilities and/or all equipment due to the damage or total destruction due to military action.
• 2. Evacuation of specialists and personnel to other regions and countries and, as a result, an acute shortage of specialists on the ground in the absence of programs or training courses/improvement of qualifications for new employees.
• 3. Lack of funds to restore lost or damaged inventory, manuals and equipment.
• 4. There is an acute shortage of inventory, manuals and equipment in Ukraine, even when there are funds for their purchase.
• 5. Lack of system support for restoring services provided by NGOs.
• 6. Unreasonably high, business-level heating tariffs, introduced before the war for private services that provide assistance to children with autism and other special educational needs. Thus, the cost of heating services for a kindergarten for 32 children for the winter amounted to more than $13,000. The authorities put the solution to this problem on local budgets, but in the conditions of war and general budget deficit, it is impossible to solve the issue, it has been suspended.
• 7. Lack of sufficient Ukrainian and international sources to ensure proper financing of working services in the difficult economic situation in Ukraine.

1. Future plans:

• 1. With the participation of specialized NGOs, representatives of the executive and legislative authorities, international institutions,we can develop a strategy and an all-Ukrainian plan for the restoration of rehabilitation and educational institutions that provide services to children with special educational needs in the short, medium and long term.
• 2. With the assistance and support of the international community, it is possible to build a network of social services of appropriate quality, taking into account all the issues that have arisen as a result of military aggression
• 3. Create a separate logistics corridor for the evacuation of vulnerable categories of citizens, including people with autism.
• 4. Create and launch services providing appropriate advocacy and support services for people with disabilities, as well as mediation services to defuse conflict and tense situations that arise in places with the greatest concentration of vocational training.
• 5. Create services for after-school children, such as day care, respite, etc., to free up parents’ time for solving urgent issues.
• 6. Equip transport departure points, waiting rooms, the transport itself, and inform relevant services in an accessible and easy-to-understand format about the needs of autistic people.
• 7. When arranging bomb shelters and similar special places, the needs of people with disabilities and, in particular, with autism, should be taken into account.
• 8. Reduce the financial burden on licensed and/or certified private institutions: subsidies for payment of heat supply, educational subsidies (“Money per child”)
• 9. Ensuring the development of inclusive education: decent funding, training of specialists in the best domestic and international practices, support at the highest state level.
• 10. Introduction of simplified licensing/certification for online education including foreign university programs.
• 11. Development and distribution of booklets for the juvenile police of the EU countries and the police of Ukraine on the problems of people with autism and possible methods of help and intervention.
• 12. Funding projects of public organizations from Ukraine and “Autism-Europe”

1. Current actions of NGO’s in Ukraine and Autism-Europe:

• 1. Providing families with children, teenagers and family members with autism and comorbid diagnoses with basic necessities – food kits, hygiene products, clothes, educational equipment, manuals, etc. manuals, etc. – and advocacy services in the broadest sense of this term.
• 2. Information about threats, rules of behaviour in various situations, useful data and opportunities to receive help and support in various situations in easy and convenient formats.
• 3. Provision of specialized humanitarian assistance to families with autistic children (fidgets, educational and calming toys, “Passport of Autism”).
• 4. Fundraising to support Ukrainian organizations.
• 5. Informing Ukrainian refugees about local therapeutic centers for people with autism; general information support. Facebook group “Ukraine autism HELP – міжнародна допомога українцям з аутичними дітьми” https://www.facebook.com/groups/667774194546768
• 6. Search for translators to work with Ukrainian families.
• 7. Free online resources in Ukrainian: lectures, infographics, etc.
• 8. Creation of a global database of specialists – Autism Unity project
• 9. Implementation and development of the Easy Reading Format project. (FLCH). Presentation of information in plain language. Available. Many infographics for people with autism, with intellectual disabilities, for the elderly, for those who do not know the language well.