The director of the foundation that runs the center, Iryna Sergiyenko, has pivoted too: Instead of running a school, she’s fielding requests from dozens of families with autistic children who need help and have, in many cases, fled Ukraine, as she has. Through messaging apps and a Facebook group she set up called ‘Ukraine autism HELP,’ Sergiyenko — who has an autistic younger brother — responds to a litany of common pleas: Will there be autism services where I am going? How do I explain why we left, and why my child’s father stayed behind? Are there any therapists who speak Ukrainian where I am?

She is one of many autism professionals scrambling to address the needs of Ukrainian autistic people whose lives have been upended. Across Europe and elsewhere, many have opened up their schools, connected families with therapists who speak Ukrainian, and collected medications and autism-friendly toys. They are raising money to support families or, like Sergiyenko, keep the lights on somewhere. One of the mothers Sergiyenko helped left for Bulgaria, noticed a lack of autism services there and immediately started organizing providers, with Sergiyenko’s support.

“That’s what we do,” Sergiyenko says. “We don’t like to sit still.”

The task they face is enormous: Nearly 5 million people have left Ukraine since the war started, according to the United Nations High Commissioner for Refugees, the U.N. refugee agency, with more than 7 million others displaced within the country. Among them are at least 4.3 million children, according to UNICEF, and some may never return home.

“We need to understand that the magnitude of the migration is staggering,” says autism researcher Katarzyna Chawarska, professor of psychiatry at Yale University.

Autistic people and their families fleeing the war need the basics: food, water, shelter and safety. But they often have additional needs that can be difficult to find under the best of circumstances, let alone in a crisis. Many people with autism prefer to follow strict routines and have anxiety — and autistic children may be especially in tune to their parents’ distress yet unable to articulate their own emotions in response. All of this can intensify the stress of the war and make autistic people more susceptible to the effects of trauma, in both the short and long terms, Chawarska says.

“The biggest concern is that our kids really have fewer resources to cope, and in some cases lesser ability to understand what’s happening,” she says.

Chawarska grew up in Poland, where many people, she says, share collective memories and trauma from the former Soviet Union’s previous aggressions toward that country. When Russia attacked Ukraine, Chawarska says she immediately thought of the families with children with neurodevelopmental conditions and the immense challenges they would be facing, whether they decided to stay in Ukraine or seek safety outside of the country.

“There’s no shortage of people who are incredibly talented and extremely willing to step in and help.” Katarzyna Chawarska

In addition to authoring a call for aid through the International Society for Autism Research, Chawarska has been coordinating with colleagues at the University of Rzeszów in Poland, about 400 miles from the Ukrainian border, to assist families crossing into the country. Many aid agencies are designed to respond to immediate needs such as food and shelter, Chawarska says, but they aren’t equipped to help with minimizing trauma or helping families find educational and therapeutic services. The university is trying to address that in part by providing trauma experts.

Many aid volunteers are also not aware of the best ways to interact with autistic people, who may have difficulties with social communication, especially across a language barrier, says Małgorzata Grobelna, a representative at the JiM Foundation, an autism advocacy organization in Łódź, Poland. JiM has its own volunteers advising aid workers on how to communicate in a clear, precise way — avoiding metaphors, for example, and using short, simple sentences. “It’s already making a difference,” Grobelna says.

Her team is working on many fronts: raising funds for families, providing legal aid, collecting necessities and operating a phone line with Russian, Ukrainian and English speakers to field requests from stranded families. They also run a school for children with autism and other disabilities, which has opened to Ukrainian children. One student, a 7-year-old autistic boy named Artem, had already lost some of his verbal abilities and independent skills in the month since his family began seeking help, Grobelna says.

“You can already see how many steps back that brought him,” she says. “It’s really heartbreaking to know what they experienced and what they escaped from, but also it’s very wholesome to see that slowly they are getting into the new routine and finding friends. It’s a little bittersweet.”

Although most of the response thus far has been to provide immediate help, organizations and countries will soon need to begin thinking longer term — “moving from the crisis mode into management mode,” Chawarska says.

Finding ways to track where families with autistic members end up would help, in order to better understand what they need and how to reach them, she says. Countries such as the U.S. could also earmark parts of their relief funds specifically for families with autistic children and those with other disabilities. The U.S. and Europe should increase communication to bolster the process, she says.

“There’s no shortage of people who are incredibly talented and extremely willing to step in and help,” Chawarska says. “We just need to have a better sense of how to be most effective.”

Sergiyenko’s team is already planning for the future. Large swaths of Ukraine had few autism specialists before the war, and many have fled; a good portion will not come back, Sergiyenko suspects. One of her colleagues is investigating how to get funding for training to cover the gap. Sergiyenko and her colleagues are also strategizing about how to help families who will want to return to Ukraine but no longer have a home.

In the meantime, families in Ukraine continue to struggle, Sergiyenko notes. Autistic children’s routines now include learning safety measures such as how to respond to an air-raid siren — go to the basement — and how to tape up windows to prevent flying broken glass. Some families are still living in shelters or underground in the metro stations, which are crowded and noisy and can exacerbate an autistic child’s sensory problems.

“Can you even stim? Can you vocalize? Can you do any of the self-regulatory things you’re used to doing?” Sergiyenko says. “Usually, the answer is no.”

A woman Sergiyenko is close with lived in Berdyans’k, a port city now under Russian control. Her 11-year-old son, Max, is autistic. He enjoys painting and, since the war began, has taken to walking around his backyard wrapped in a Ukrainian flag. Max is furious about the war, Sergiyenko says, but doesn’t understand the danger of sharing his views: He recently walked up to a Russian solider and asked him when the soldier was going to die.

After several weeks of looking for a way out of the city, Max’s mother managed to find a ride in a minivan, following Sergiyenko’s advice to avoid a ‘green corridor’ that may have been a trap. She had to give Max sleeping pills to ensure his safety at Russian stops. For now, they are staying in Ukraine, and Sergiyenko is staying in touch to make sure they have what they need.

“It doesn’t feel like enough, but we do what we can,” Sergiyenko says. “It feels like it’s never enough.”

Question: We know the difficulty of communication in general, but in this war situation how is the best way to communicate to autistic children what is happening?

Answer: Most parents start with explaining the new rules verbally. Initially, that is all they have and their priority is teaching their child the new safety protocols. Soon after the invasion, visual explanations were created for autistic children, outlining that Russia has attacked Ukraine and the rules to keep themselves safe. Some children have taken a special interest in the war and asked their parents for deeper explanations and updates on what is going on. There aren’t visual support stories that explain the situation in detail, so parents can only rely on themselves and their ability to explain. Autistic children with access to phones and internet have taken to reading the news themselves. For those children, a support story on how to not overwhelm themselves with the news would be helpful. Likewise, a similar guide for parents.

However for many autistic children there was no explanation on their level of understanding. All they know is that there are new rules, and their routine has been destroyed. They cling to what is left of their routines, refusing to interrupt their breakfast even if an air raid siren is going off.  They don’t understand the danger, and parents are afraid of traumatising them by explaining the war and the dangers that it brings. Those parents would benefit from a guide on how to explain things to their child without creating more trauma. Especially if their child is non-speaking and it is hard to gauge their level of understanding.

Question: Are you supporting children and their families to leave? How the journey look like?

Answer: Currently we are able to help with information. Families have to rely on volunteer organisations to transport themselves across Ukraine and abroad. We provide them with information on centres they can request help from – both within and outside of Ukraine.

We are also supporting families with online consultations and webinars, giving them the tools to work with their children by themselves at home. And of course we are collecting donations to be able to help them more.

The journey starts in their city. If it is surrounded or occupied, the first hurdle is to get out. Some are evacuated by foot, others may pay for a bus ride, or leave in their own car – it depends on the situation. One thing everyone knows – do not trust russian “green corridors”. It only gives them easy targets. Likewise, russians are known to target vehicles marked with red crosses or “children”. Some cities had railway services. Those trains were extremely full – people had to sleep on the floor, in the corridors and on top of each other. Barely enough space to sit, much less lay. The lights would be off all the way, no phones or light sources allowed, and the train would go slower than normal in order to avoid detection by russians.

Usually a family will head for central Ukraine, or to the West. If a family is travelling by car, they will have to get through many roadblocks on their way. They will have to show passport and state their destination at each. Often their car will be searched. Travel like that can take days – it took one of my friends five days to get through what is normally a 10-hour drive. There’s also the issue of curfew, as many regions will have it starting at 8pm. This means that the family will have to find somewhere to stay or drive non-stop. Either way, it is a very hard journey.

At the border, they will have to wait for a long time. Most likely they will have to say goodbye to the father of the family, as Ukrainian men under 60 years old are not allowed to leave the country. Needless to say, it is very traumatic for the whole family. They don’t know if they will see their father/husband again. Most of the time, they only have a vague idea of where they are heading to.

Volunteers across the border are doing their best, but with millions of Ukrainians seeking shelter, they are overwhelmed too. Having to stay in shared shelters is hard for anyone, even more so for an autistic child. If their mother is unable to find separate lodgings or a centre for her child to continue therapy, they will often go back to Ukraine after weeks of trying.

Question: Besides the basic needs, what are the main obstacles you are identifying?

Answer: Parents are used to having specialists as a support system. Without them, they lack the skills to guide their children through the wartime. They don’t know how to deal with trauma, PTSD, heightened anxiety and depression that their autistic children are going through. Many of those children are showing new behaviours that are very concerning to parents (eg, episodes of smearing poop on the back of the sofa with no memory of doing so).

Some autistic children and teenagers were taking regular medicines – those are hard to find now. As a Foundation, we do not deal with drugs or medicines. So the best we can do is refer families to volunteer organisations that handle those things. I am not sure what, if anything can be done to improve this.

Families often have to evacuate with bare essentials. That means that items that the autistic child used to de-stress and soothe themselves are no longer available.

Autistic persons are often forced to be in crowded spaces for long periods of time, without appropriate support items to ease the sensory or social issues.

Parents in Ukraine know little about mental health. Most of them would benefit from seeing a psychologist, but may be unaware that it would help them, or if it is an option they can choose. Or their internal bias will prevent them from seeking help.

Service providers for autistic kids have been relocated and in many cases have nothing but their knowledge. We are collecting donations to help them acquire the items they need to once again provide services for families with autistic kids.

All centres are facing large debts on utility bills. Mostly inordinate amounts for heating due to new legislation putting the same tariff on private centres as on big shopping malls. Our preschool that can have 36 children at most and has to pay at least 300.000 UAH (about 10.000 EUR). We and many others are facing the danger of being closed and our building confiscated. We are the first and only preschool for autistic children that prepares them for regular schooling. We have reached out to the government and nothing. Other centres are facing the same issues and have reached out to us for help. We are coordinating the efforts best we can, but there’s a limit to what we can do when dozens of centres have to pay tens of thousands Euros they don’t have.

Between being unable to open due to the war, using centres as shelters (including our own) and parents having no money to  pay with, Ukraine is facing a humanitarian catastrophe when it comes to supporting families with autistic children.

We are doing our best to coordinate with other centres and see how much all of us need to stay open. The numbers are horrifying. None of us will be able to stay open. The government doesn’t care to forgive the debts or amend tariffs to a more sane amount.

Question: Do you cooperate with other organisations of disabled people in Ukraine in the context of the conflict?

Answer: Yes. We have a network for organisations that work with autistic children. Quite a few of them provide services for more than autism.

Question: How can we help children with autism and their families that remain in Ukraine ?

Answer: Donate to support the functioning of our centres. That is honestly the best way to help. I understand the desire to help directly by sending care packages and fidgets, but in the long run it is not helpful. Just as autism cannot be “fixed” with medication, our families cannot be helped with toys. They need proper support structures. And those are being destroyed by the debts that our government refuses to forgive.

So the other way to help? Put international pressure on the Ukrainian government to forgive debts incurred by facilities that provide support for people with disabilities.

Question: What are the main needs of the refugees?

Answer: Appropriate housing and language barriers are the first issues they face. It is followed by need for guidance on confirming diagnosis, receiving therapy, education and other support for their child.

Question: Do you have information regarding  the situation of autistic people who are institutionalised?

Ukraine does not have many centres for institutionalised autistic persons. Many of the patients have evacuated to other countries with their families. So those centres don’t function. There is a campaign going on in Ukraine to evacuate people with disabilities first, since they face the biggest risk of death in wartime. Patients who did not have family to take them, have been evacuated to other countries too. For example, Germany and Israel have agreed to take in the children who have been living in orphanages [1] and who need special assistance.

Question: What would you ask of the institutions (at the national and international level) and all stakeholders involved?

Answer: Please donate and please put pressure on your and our governments to help us. Autism is not talked about as widely as other disabilities – I’ve heard reports that even the Red Cross doesn’t know how to help autistic children. As I said before, we need donations to help ourselves and international pressure on our government to ease the monetary pressure on us. Then those tens of thousands of Euros that would be spend on unfair utilities tariffs would be spent directly on the families in need.

 More information on Child with Future

• Website Child with Future
• Facebook Child with Future

[1] Editorial note:  the majority of children who have been living in orphanages have living parents.

https://www.edf-feph.org/blog/interview-with-child-with-future-on-the-situation-of-children-with-autism-in-ukraine/?fbclid=IwAR0ehEXstM0uiVSUP2mlODzWLbecodpLeZDRe8OPezisKud8MRSV8z1APJY

The true pioneers in the neurodivergent community are mostly parents, siblings, and relatives of someone with autism. They have spent years reaching out to other parents and friends who also usually have a child on the spectrum, creating social webs, knowledge bases, information hubs.

Inna Sergiyenko is one of these parents. Years ago, she became frustrated at the lack of support she was receiving in Ukraine for her son with autism, Misha. She realized that the main issue was a lack of structure and organization.

“Ukrainians are used to doing everything on their own,” Inna told me one sunny spring afternoon from her northern Kyiv apartment (only a 10-minute drive from a devastated Bucha). “There are so many people and organizations in Ukraine, who have their own way of getting help. We thought if we could connect them somehow, horizontally, imagine what we could accomplish.”

Inna had long worked in a large corporation and knew the pros and cons of a solid hierarchy. When Inna’s daughter, Iryna Sergiyenko, returned to Ukraine after studying in England with a master’s degree in mathematical economics and statistics, they joined forces and started Child with Future.

The Priorities of the Ukrainian Network

Iryna and her mother spent the last few years diligently creating networks, fighting to change legislation, and petitioning the Ukrainian government for money. The three main issues they focused on were the following:

1. Education: Bringing the best autism speakers, educators, therapists, and doctors from all over Europe and the United States to Ukraine via Zoom to empower disparate autism support organizations with the latest science and therapeutical methods.
2. Regulation: Inna and Iryna wanted to not only change legislation within the Ukrainian government but also to standardize care in Ukraine. They worked with Saudis; Swedes; Australians; Dr. Stephen Shore, a board member of Autism Speaks and professor at Adelphi; and even Maryna Poroshenko, the wife of former president Petro Poroshenko, a proponent for inclusion in schools and the workplace. Iryna pored through the data, calculated the costs, and presented to the Ukrainian government her findings; it was cheaper to care for the disabled than it was to neglect them.
3. Fundraising: They raised money not only for their centers, where parents, siblings, and caregivers could drop in to get help but also for the various programs that were within their network. They also lobbied for more government funding.

Russian Invasion

Iryna and Misha fled to London when Russia invaded in February. Inna stayed in Kyiv. Ukrainian refugees with children with autism were suddenly scattered all over the world and not only were they suffering from trauma, but they also still had the same medical and therapeutic needs. Inna and Iryna realized that their network was needed more than ever. Instead of closing, they extended the web beyond the Ukrainian borders, making contacts in Romania, Poland, and Moldova.

For example, Iryna got a phone call from a mother and her teenage son with autism who had fled to safety in Poland. Her son was smearing poop on the walls. He never did that as a small child, his mother said, but now, as a teenager, he’s started. Where can she get help?

She got another call about a boy with autism, in an occupied Ukrainian territory, who asked his mother for an RPG to kill Russians, who marched around their backyard with a Ukrainian flag, went right up to the Russian soldiers and told them he wished them dead. When we flee, the mother asked, how do we get my son past Russian checkpoints without getting shot (they did with the help of sleeping pills)?

Inna helped out a boy with autism in Kharkiv who refused to leave a bomb shelter. How do we communicate with him, they asked her? Is there a psychologist in the area to help get him out?

She also worked with a family in Mariupol who hid in their basement every night. Their daughter with autism stimmed by screeching. If the Russian soldiers heard her, they’d throw a grenade through the basement window. Was there someone who could help the siblings and parents keep their sanity?

Iryna and Inna spend their days now on the phone or emailing, connecting parents with other families and aid organizations. When refugees with autism do not have a stable home, are moving constantly, and are unable to get medical or therapeutical help, danger looms.

The Impact of War and Autism

More than 12 million Ukrainians have left their homes. The World Health Organization estimates that one in a hundred children have autism, Autism Europe claims that there are close to 440,000 children with autism in Ukraine. It would be safe to assume that more than a 100,000 Ukrainian children with autism have been displaced and are leading a life of transition.

Autism Europe warns:

• People with autism and their families appear to be overlooked in some cases by humanitarian aid agencies, as the nature or extent of the disability is not fully understood. This can leave vulnerable individuals and families without access to official channels of support.
• Ukrainian adults with autism without intellectual disabilities are generally undiagnosed in Ukraine and many neighbouring countries and do not have access to any official support services or social protection. The war renders their situation even more challenging.
• People with autism who have intellectual disabilities living in institutions or orphanages are cut off from their families and are particularly vulnerable.

Some of the autistic people who are being affected by the war cane be seen in the documentary, “Not Forgotten – The Untold Story of Autism in Ukraine.” Where are Alexandra, Svetlana, and their daughter Nastia, who moved from Donetsk to Kyiv to get better help for their autistic daughter? Where is Ludmila, high up in their apartment flat, and Vadim, her son with autism, whom she cannot let out of her sight? Where is Igor Kirienko who we in the touching Youtube video, waving good-bye to his 3-and-a-half-year-old son with autism who is packed on a westbound train with hundreds of other panicked women and children? With tears in his eyes, Igor says his son knows 46 countries, but not about the war in his own country of Ukraine.

Olena Tsarenko escaped Kyiv with her two daughters, one of whom has autism. “It was a very hard and exhausting trip and I don’t know what happened,” she said, “but Veronika wasn’t crying. But now all night long, she’s crying and she’s in distress.”

Inna told me melancholically, “This is the problem. You suddenly have all these Ukrainian refugee autistic children who are regressing. They need help.”

There is martial law in Ukraine, people are sometimes forced to stay inside all day, employment has been hindered, the price of gas and food has risen, but there are still heating, water, and electricity bills. Carers and therapists still need to be paid.

“We don’t need sensitivity toys,” Iryna said. “We need money to keep the lights on in our centers and to get the help to the parents in need.”

https://www.psychologytoday.com/intl/blog/what-will-you-do-when-i-m-gone/202205/how-war-and-displacement-traumatize-people-autism?fbclid=IwAR0FQtCBxX1jyNnOGR098mevujkG3FO2cX47uIuU5md4vMIq3Gl5o5Fytas

For the millions of people who have been forced to flee their homes in Ukraine, the war has not only meant death and destruction, but also a complete disruption of their routines — their lives were upended suddenly, unexpectedly and forcibly.

This has been particularly difficult for Ukrainian children and adults with autistic spectrum disorder. For them, habits and familiar places and faces are essential to manage anxiety and stress.

Autistic refugee children suffering

The International Society for Autism Research has warned that “for many displaced Ukrainian families, the trauma of war has been amplified by the difficulty of protecting the security and the well-being of their children with autistic spectrum disorder, for whom separation from family members and from their teachers and therapists, the destruction of a routine and lack of essential goods can be particularly devastating.”

These children, in fact, “are more vulnerable to trauma and the feelings of horror and powerlessness can lead them to develop mental health and long-term medical problems,” it said.

Many families of autistic Ukrainian children have reported that they have regressed.

On top of this, many autistic refugees and their families and friends also struggle with finding support in the cities hosting them, in a foreign country and a foreign language.

Facebook group trying to help refugee families get help

A Facebook group called “Ukraine autism help” is trying to help them. Over 3,000 people have already joined it and they are getting requests from across the world, from the Czech Republic and Germany to Canada and the United States.

The group was created by Iryna Sergiyenko, the director of a foundation that managed a nursery for 30 autistic children in Kyiv before Russia invaded Ukraine on February 24. Since then, the building has been turned into a shelter and a warehouse to store food.

Iryna founded the Facebook group to help Ukrainian families of autistic people who are in foreign countries, according to the website Spectrum News.

In the group, people ask for information on things such as local therapists and how to navigate bureaucratic procedures to access services. Some people offer to send sensory toys and anti-sound earplugs. Others, like Molly Ola Pinney, founder of US organization Global Autism Project, offer lodgings, services and materials in the 20 states in which it operates.

“We are doing everything we can {to help], but it never seems enough,” noted Iryna.

The international association Autism-Europe also features a list of agencies providing support for Ukrainian families with autistic members in several countries. Many are in Poland, which hosts the majority of refugees, but there are also organizations in countries ranging from Lithuania to Spain, from Ireland to Portugal. Many countries, however, are not present in the list.

https://www.infomigrants.net/ar/post/40114/facebook-group-helps-ukrainian-refugees-with-autistic-children?fbclid=IwAR1Sv32K_B_CbLgsTRmCTlaaR54Jl2QjR59qPQt9LHT7DVqmFrR3NkxCFa4

Sergiyenko and Misha, along with their rabbi, fled their war-stricken homeland, escaping the early morning bombings and destruction of buildings nearby in Kyiv. For two full days, the three traveled through Ukraine, mostly at night and on back roads, until they finally found safety in Hungary.  

Although the Sergiyenko siblings’ escape might sound similar to that of the millions of Ukrainians who fled Russia’s invasion, it is a bit unique; because 15-year-old Misha is autistic, and Sergiyenko, who is 30, found herself responsible for his safety.

Even in refuge, her responsibilities grew. A caretaker of a teenager with autism, and an advocate for dozens of Ukranians just like her brother.

Sergiyenko is also the director of the nonprofit Child With Future, a foundation started by her mother, Inna, after Misha’s autism diagnosis, supporting people with autism in Ukraine. During the war, the foundation kept going; and even after fleeing, Sergiyenko worked to provide information and assistance to dozens of people, like herself, who fled Ukraine with their autistic and disabled family members. 

What Sergiyenko learned, and what she wants the public to understand, is the degree of trauma people with disabilities — specifically, those with autism — endured (and continual issues) because of the war and how the world can help improve their livelihoods.

Like she is trying to do. 

Before The War

As a boy, Misha’s family began noticing signs that he was developing differently. 

At around two, he stopped talking and making eye contact. When Ukrainian doctors evaluated Misha, they assured the Sergiyenko family he’d be okay– that this was just a phase. 

Skeptical, the Sergiyenko’s traveled to Israel to get a second opinion. Here, Misha was diagnosed with autism, or a developmental disorder that changes how people communicate and interact. 

When the family returned to their home in Kyiv, they searched for services to no avail. So, Inna, the family’s matriarch, decided to take matters into her own hands.

In 2011, Inna founded Child With Future. 

“We do quite a lot of things,” Sergiyenko said. “We work with the government and other NGOs to promote the rights of autistic people of all ages and demand laws to include them.

“For example, inclusion didn’t include autistic people in Ukraine initially; we helped change that.”

Their first project was to create a preschool for children with autism. Eleven years later, they’ve become influential in the disability space in Ukraine, and even across Europe. Sergiyenko started working for her mom’s nonprofit as a director, and the two would travel around Ukraine giving educational lectures about autism. They organized local and international conferences and even started a sports club for autistic teenagers. 

“We also started an information technology class in Kyiv for autistic teenagers to help them learn their way around the computer and to help them learn programming and design skills that will be useful to them in the future,” Sergiyenko said. “And we were translating books about autism and literature for parents and schools.”

“And then the war began.” 

Living in War

On February 24, 2022, Sergiyenko woke up to chaos.

“My mom burst into my room saying, ‘Wake up! The war has started!’” she said.

At first, the family, including Sergiyenko, Misha, their mother, father, and sickly grandmother who needs round-the-clock care, decided not to flee. Instead, they huddled together in the basement. 

“Immediately, we had concerns about electricity, water, food; what will happen?” Sergiyenko said. “We have a big freezer filled with food and basic supplies. So, we figured we had enough to stay at home and go nowhere for a week. We filled the bathtub with water in case the water got cut off and charged everything we could while electricity was working.”

But the week in the basement together ended up being a month. And then family friends and their dog joined. 

Weeks in the basement took a severe mental toll on Misha, who felt the pressure and stress of the situation. He could not self-regulate; typically, Misha takes baths to relax, but now he could barely leave the basement. He was also stressed that he couldn’t see his friend for his birthday or play his favorite games. Misha even started rationing his food when he realized his family might be in the basement long term. 

“Watching him struggle affected us all,” Sergiyenko said. “We had to tell him he could have bigger portions of food.” 

Escaping The Russian Invasion

As Russia continued to bombard Ukraine, the Sergiyenko family found themselves in an inconceivable position: should they leave their homeland? Or continue to remain and risk their lives? For them, the answer wasn’t that easy. 

Sergiyenko’s father couldn’t leave the country because of his age (men between 18 to 60 were barred from leaving), and her sickly grandmother wouldn’t survive the journey. The family decided that only Sergiyenko and her brother Misha would escape, with their ultimate destination being London, where their cousins lived.

“I didn’t want to leave, but Misha was struggling, and mom saw him struggling more and more each day and shutting down, and she didn’t want him to get worse,” Sergiyenko said.

On March 17, their rabbi picked up Sergiyenko and Misha for the long and uncertain journey out of the country. With fear, but hope in their hearts, they traveled for two full days, barely stopping, before reaching Budapest, Hungry, where they met a relative. Then, they boarded a flight to France, where they stayed with other family members for a month while applying for resettlement in the United Kingdom. Eventually, they were accepted and flew to Oxfordshire, England, where they are today.

“Before we went, dad sat down and gave me a very serious talk. He went over first aid procedures and what to do if we’re being shot at, and what are the priorities? He also talked about where roads were most likely to be mined,” Sergiyenko said. “He said I would have to look where the trees would be and the landscape around me so if anything happens, I know where to go.

“He told me my priority was my life, then my brother’s, and then the stuff we had, and then everything else.”

Providing Assistance

Even while enduring the trauma of war, Sergiyenko and her mother worked diligently to provide for other autism families. 

It began when Sergiyenko received phone calls from parents who fled Ukraine, asking for information and resources to support their children. Because Child With Future is an international foundation, other autism nonprofits around Europe also reached out to Sergiyenko, offering assistance. Sergiyenko began connecting Ukrainian refugees with organizations in their host country. 

Sergiyenko created a Facebook group to connect families in need with autism organizations. The group already has almost 4,000 members, including people who fled to places like Poland, Turkey, France, Spain, Moldova, Hungary, Germany, the UK, the Netherlands, and even the United States. 

The group also became a sort of job board for autism specialists who fled Ukraine and are looking for work.

“Some organizations have been using the group to collect the statistics of what people need and where they are and use it to send stuff,” Sergiyenko said. “Some organizations have translated autism passports, which is useful.(An autism passport is designed to help people with autism communicate their needs to people who might not understand them, like healthcare professionals, police officers, etc.) 

“People are also offering translations for people looking for translators.”

When Sergiyenko isn’t busy connecting people, she is raising Misha. 

She is his sole caregiver now. 

Her other priority: to spread awareness about the trauma Ukrainian refugees with autism are experiencing.

“Many autistic refugees are now exhibiting a trauma response or a post-traumatic behavior which has completely different management strategies than autism,” she said. “I had a call with one of the parents where she described a behavior, which can be typical for autism, but her son wasn’t doing it before. And it only started after they escaped the war, and the therapists were trying to treat it as an autism thing. And it wasn’t working at all.

“So now, we need trauma specialists who know autism because that’s two things put together, and you don’t really see those specialists– I don’t think they exist.”

The Future

More than 14 million people are believed to have fled Ukraine since Russia’s invasion. Autism Europe estimates there were close to 440,000 children with autism in Ukraine, meaning many of those who are now displaced are autistic. 

Autism Europe also said people with autism and their families are being overlooked in some cases by humanitarian agencies because of how disability — more specifically, autism — is understood in Ukraine and neighboring countries. As a result, according to the nonprofit, these people don’t have support or access to much-needed services. 

Sergiyenko and her network are trying to fill that gap — to provide for autistic people and their families in need. But they can’t do it alone.

“Just because people have a disability doesn’t mean they’re not as traumatized as the other Ukrainians. They may express it differently. That’s part of autism; they express themselves differently to neurotypicals,” Sergiyenko said. “But they’re just as traumatized as the rest of us.” 

To keep up on Child With Future’s efforts, visit their website. 

source: https://visablestories.com/?p=515

Inna Sergienko, the founder of the “Foundation for Children with Autism Syndrome “Child with Future,” was the studio’s guest, and she discussed the challenges faced by autistic and other mentally disabled children as a result of russia’s military attack on Ukraine, as well as the impact on the mental and physical health of special children on a daily basis.

Parents and relatives of children with mental disabilities were also participating in the program, telling their experiences about life under occupation, terror, and despair, and getting out of an apparently hopeless position for the sake of life and the future. 

Volunteer Elena Bondarchuk recorded a video message for Italian media on April 18, 2022, in which she congratulated all Ukrainians on Palm Sunday and spoke about the difficulties faced by autistic and other mentally disabled children as a result of russia’s military attack on Ukraine, the effects on children’s psyche, the initiative of the ‘Child with Future’ Foundation to raise funds to resume the educational process.

The whole world is following and joining in to support Ukrainian children who suffer daily from the military aggression of the russian federation, and we are sincerely thankful for that! Join the video and article here.