Autistic families in Lithuania fight for adequate support amid systemic gaps

Families raising autistic children in Lithuania continue to face significant hurdles in accessing necessary support, highlighting persistent gaps in the country's educational and social care systems. The struggle for inclusion often requires parents to actively fight for their children's rights and needs.

Lina Sasnauskienė, head of the Lithuanian Autism Association "Lietaus vaikai," emphasizes that true inclusion means creating an environment where all children, regardless of their needs, feel comfortable and supported in the classroom. However, simply enrolling an autistic child in a mainstream school is often insufficient. These children frequently require adapted environments, clear structures, specialized educational support, and methods to demonstrate their achievements in ways that suit them.

"Parents constantly turn to us, unsure of what to do," Sasnauskienė stated. "For example, a certificate from a psychological-pedagogical service might recommend assigning an assistant, but one is not provided. Or, at the start of the school year, families are offered homeschooling due to initial difficulties, not because it's the best option for the child." She argues that when homeschooling is suggested because a school lacks resources or specialists, it signifies a failure of inclusive practices.

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Parents constantly turn to us, unsure of what to do. For example, a certificate from a psychological-pedagogical service might recommend assigning an assistant, but one is not provided. Or, at the start of the school year, families are offered homeschooling due to initial difficulties, not because it's the best option for the child.

The association has long advocated for the practical implementation of the rights of autistic individuals. A significant achievement was the legal recognition of adult autism diagnoses in Lithuania in 2015, preventing individuals from losing their diagnosis upon reaching adulthood or being miscategorized under other mental health conditions. The "MATOMI" project by "Lietaus vaikai" aims to systematically document families' experiences, identify rights violations, and pinpoint recurring systemic flaws in education and social services. This data will be used to push for solutions grounded in the real-life experiences of autistic individuals and their families.

Furthermore, Lithuania is preparing for a major reform in social care, with a mandate to close large care institutions for people with disabilities by 2030. Municipalities are tasked with planning community-based living alternatives. While progress is being made, Sasnauskienė notes that solutions for individuals with severe disabilities requiring 24-hour care are still lacking. Municipalities are planning new community services, but families caring for individuals with severe autism or intellectual disabilities face an uncertain future regarding comprehensive, round-the-clock support.

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When a family is offered the choice of homeschooling not because it is the best solution for the child, but because the school lacks the necessary resources or specialists, then this is no longer inclusion.