Katerina Thorova connects fragmented and separated resources through comprehensive infrastructure in the Czech Republic to bring visibility to autism spectrum disorder (ASD) and the wider family of pervasive development disorders (PDD). Katerina’s organization professionalizes the field through its one-stop-shop for early intervention, care, and knowledge to all those directly and indirectly affected by autism.
Katerina is providing comprehensive support to people with autism and their families through a system of interventions that has come to define the field of autism in the Czech Republic. Katerina founded the Association in Aid of Persons with Autism (APLA) as an open and responsive hub that connects fragmented resources and separated stakeholders and builds quality assurance to define standards for care and treatment. Its organizational framework is flexible and entrepreneurial, and it encourages the scaling of innovation. APLA is using its success with autism—including its integration of diagnosis, early intervention and reforming elements of the school system—to build a standard of quality and challenge conventional notions about autism and other personality development disorders. APLA has become a model for handling PDD at the individual, community, and national level.
In a country where knowledge of disorders such as autism is typically outdated or confined to a few lines in a hard-to-find textbook, Katerina has introduced a paradigm that puts up-to-date research about diagnosis and protocols for intervention in the hands of people who can efficiently and effectively communicate them to families and practitioners. APLA is not just about services but is designed to transform beneficiaries into active and empowered citizens. APLA works with difficult aspects of autism and ensures its symptoms, as well as the knowledge about it, are absorbed into society.
Today Katerina’s model is thriving in Czech Republic and is regarded by many in the field as a paradigm of high-quality, integrated, preventive care essential for the future of autism in Central and Eastern Europe. Through changing a pattern relating to autism, she is enabling a bigger shift in society in terms of the way Czech Republic handles the needs of its people. She is bringing people together who are not accustomed to working together and who previously resisted working together. Through this process, she has created a framework for addressing autism that can be useful for tackling the wider spectrum of PDD and intellectual disabilities. Katarina is now seeking to scale APLA beyond Czech Republic through a social franchise model.
There is an estimated 200 million people with intellectual disabilities worldwide. Autism is among the cognitive disabilities whose incidence is on the rise. And, absent of excellent intervention, it marginalizes and excludes the people who have it from full engagement in economic, civic, and social life. ASD is a pervasive developmental disorder with a prevalence of 1 percent worldwide. Approximately 50,000 people in Czech Republic suffer from ASD, whereas only a fraction of that number has been diagnosed. In Central and Eastern Europe, the challenges for autistic patients begin at diagnosis due to a poor understanding of the disorder, its symptoms, and its etiology, which is compounded by inadequate quality standards for treatment. Autistic patients, as with various PDD, continue to face disadvantages throughout their lives due to limited access to education, employment opportunities, and even housing. The lack of data, analysis of evidence-based treatment, and effective policies by state systems reinforce the cycle of poor treatment and reduced social mobility. In the Czech Republic, a number of citizen organizations emerged in the early 2000s to address autism and other PDD. The lack of general standards and quality assurance in these programs for diagnosis, therapy, and assistance to families, however, caused further damage and reinforced outdated assumptions about peoples’ condition.
There is a particular lack of awareness about ASD in Czech Republic. Because for decades the disabled were institutionalized, there is a lack of experience among everyday citizens with autism, leaving many with prejudices and false information. In addition, silos of professions have arisen to address ASD. These silos of professions—including caretakers, psychiatrists, psychologists, teachers, and parents—are not integrated in their responses. There is a general lack of acknowledgement of the disease and a battle for prioritization in the Czech Republic, which leads to isolation of parents and children, as well as a lack of a system to plug into for support. Even after great improvement due to Katarina’s work, there is still at least a one-year queue just for a clinical diagnosis of autism. The tremendous scarcity of information and evidence-based treatment leaves families as the only ones with the incentive to grapple with autism, rather than early intervention techniques and resources integrated into the education system and knowledge parents can easily and readily access.
There is an increasing need to showcase good models and easy-to-apply practices across all kinds of support services and treatment for people with autism, their families and professionals. Without such a system, those with autism and other intellectual disabilities will continue to be marginalized from society and denied the capacity to engage as full economic citizens. In response to this crisis and pressing need, Katerina created APLA: a universal and flexible system that can be applied on a continental level.
APLA has multiple pillars that uniquely define its approach. Clinically, APLA focuses on early identification of autism, which was non-existent in the Czech Republic before APLA. APLA educates pediatricians, clinical and child psychologists, speech therapists, and, of course, its own staff about the importance and processes of early intervention. At first, APLA faced significant resistance from every field and profession they worked with, criticizing Katerina and APLA as working on a disorder that they did not even believe to exist. Through a resilient and continuous focus on cooperation between all fields, Katerina and APLA have worked through the resistance and spread recognition about autism throughout the country and within the professions that provide therapy and treatment. APLA created an interconnected ecosystem of ASD stakeholders and injected a long-term vision for the professionalization of the field.
In its social pillar, APLA’s theoretical and practical approach for behavioral therapy focuses particularly on children with autism. In cooperation with the Ministry Labour and Social Affairs and the result of years of advocacy, APLA launched a pilot residential program for people with the most severe forms of ASD. Its aim is to provide year-round housing for children and adults with autism who need a high level of skilled support due to severe aggressive behavior. For example, when an autistic child’s parents withdraw legal responsibilities if they can no longer cope with the needs of their autistic child, state courts typically send these children to psychiatric clinics. The needs of the children, however, are often not clinical but typically social. In these cases, APLA receives funds from the state to care for children in APLA’s community homes. Without APLA, autistic children are confined to psychiatric clinics or institutions, even when their condition is mild or moderate and does not require psychiatric treatment. Or, these children do not receive treatment or therapy at all. APLA also offers other residential placements for autistic kids, even when their needs are not severe enough to require full-time housing. In addition to its work on housing, APLA also focuses on employment, recreational activities for kids to ensure families can fulfill their daily obligations, activities for autistic children and their non-autistic children to interact, and social and legal aid. APLA handles the realities families face and creates alternatives that help everyone.
APLA is the most recognized knowledge hub, educational and pedagogical authority for ASD in the Czech Republic. In 2010 alone, APLA trained 2,500 people, implemented 410 diagnostics, completed 230 special pedagogical consultations and assessments, completed 500 consultancies within the early intervention program, and counted hundreds of more beneficiaries in the other services offered. These services include household and school consultations to offer modifications that are more accommodating for autistic kids, welfare consultations by APLA social workers, exercise rehabilitation, supported employment, and summer camps for autistic kids. In order to reinforce these offerings, Katerina and her team designed more than fifteen standardized training programs for experts of a multitude of medical professions (primarily pediatricians, psychologists, psychiatrists, neurologists, and pedagogues), though mainstreaming ASD into the medical system in the Czech Republic. Katerina was the first to work with a child psychiatric clinic on autism and assisted the clinic in the development of specialized programs and research activities on autism. Katerina and her staff have published key books on ASD in the Czech Republic and increasingly work with academia to expose the realities of ASD within the university landscape and curriculums. APLA staff members are financially incentivized when they publish, lecture, or engage in the education system. In addition, each time APLA discovers something new about early diagnosis or therapies, they offer lectures to distribute the knowledge. APLA exists to spread education outside of its own organization walls, as well as cooperation and support for new organizations in the field.
Public education is the fourth pillar. Katerina has diagnosed kids with autism in schools, presented the results to the teachers and the academic leadership advocating for specialized programs, supported schools to set up specialized programs, and trained the teachers in key areas, such as diagnosis and special follow-up care. Katerina has transformed how schools for disabled children embrace ASD. Katerina’s near term goal is also to open a preschool to serve as the training location for early intervention. Given the one-year queue, she wants to ensure early intervention is built into the school and preschool systems, so that parents and families do not have to wait for diagnosis when it is possible to detect autism earlier.
In addition to its work within the school system, APLA also focuses on broader social messaging to transform thinking, access to knowledge, and general assumptions about autism. These activities are accompanied by publicity and campaigning that engage citizens across the country. Katerina believes that families of people with disabilities, but also the broader public, play an important role in understanding and also promoting inclusion and equal participation of people with ASD and other intellectual disorders in mainstream society. APLA is organizing a number of conferences dedicated to the professionalization of the ASD sector, and is increasingly active on the international level inviting organizations that work within the ASD field to the Czech Republic. Katerina engages celebrities and public figures to talk about ASD on different occasions such as International Autism Day or sport competition for children with autism.
APLA is designed as an organization that fosters creativity, ambition, and innovation. It uses criteria about the commitment of its staff to educate them and disseminate knowledge. Each of APLA’s staff members must have the drive of an entrepreneur to be hired, which helps to reinforce the mission of an innovative, ambitious, and flexible organization. Currently APLA has sixty full-time staff. The size of the organization has required Katerina to develop a smart organizational structure that frees her from day-to-day management yet maintains her role as entrepreneur and innovator, as well as ensuring the space for staff to innovate processes and thinking as well. Katerina sees herself as the “bringer of ideas” that she fosters and develops to the extent that they can be processed by her colleagues. Katerina is now Director of Programs. She splits her time between diagnosis, lecturing, program development and international expansion. APLA has a separate Head of Operations as well as a board of directors.
APLA’s financial model is based on a diversified funding and income stream, which is an operational model that fosters APLA’s sustainability and long-term planning. APLA’s operations focus on sustainable resource mobilization and partnership building. The combination of partnerships with authorities (ministries, regional and municipal authorities), European funds, corporate actors, and public fundraising campaigns have allowed APLA to generate an annual cash flow of 1 million Euros (US$1.372 m), which despite the financial crisis has not decreased. In addition to public and private (CSR) funds, APLA generates income through offering autism support services (such as diagnosis). Financial contributions of clients contribute to the sustainability of APLA as well.
Katerina is driven by innovation on a daily basis and constantly develops new creative approaches and solutions to overcome barriers and challenges. This is reflected in her progressive program development and implementation of new pilots that can be replicable in the future. Katerina is convinced that the universal approach of combining the development of replicable models, training of experts, teaching, publishing, conferences, and engagement of citizens can be adapted and transferred to other organizations working with other cognitive disabilities. She is now focusing on a franchise model that has been in the works since the birth of APLA, yet they have waited until their impact would allow them to scale elsewhere in the country. There is the potential for APLA-certified branches to spread throughout CEE.
Katerina’s first experience with autism took place during her childhood as a result of her autistic brother. During her study of clinical psychology she decided to learn more about her brother’s disorder and dedicate her thesis to ASD. At this time in the mid 1990s, Czech Republic lacked a support infrastructure for autism. The disorder was not even officially recognized and there lacked awareness within the educational and medical system as well as in state institutions. In addition, there was no literature available on ASD in Czech Republic. The only book that Katerina could find about autism at the time was Extreme Loneliness, which relayed outdated information from the 1960s. At that time as well, only patients with extreme mental disabilities received any recognition from the state, which meant being institutionalized in very poor conditions—ten to thirteen people crowded in each bedroom, for example. People with mild or border-mental disability were completely left out, as was the case for her brother. Recognizing the lack of resources and awareness, yet the pressing and personal needs of the problem, Katerina became committed to changing this paradigm in Czech Republic. She was determined to create a world where her brother and all people with autism and other forms of PDD could access needed treatment or therapy and integrate into society as fully engaged citizens.
Katerina took a year off from her studies and went to New York in order to discover an entire movement of literature and research autism. While Katerina was travelling, she received an award for her thesis and a scholarship to continue her studies on ASD in Belgium. After these studies were complete in 1995, she returned to the Czech Republic as one of the first experts on autism and began working with the State Consultancy Centers for people with intellectual disabilities. She was eventually appointed the point person for autism in the Prague region. In this position, she began to develop and implement a structured and comprehensive approach to raise the awareness and equip key stakeholders with the capacities and tools to tackle autism.
During her time in this role, Katerina designed and implemented educational programs for teachers working in special schools (dedicated to children with cognitive impairment) to understand autism and be able to respond to the various needs of children with ASD. This approach is still a part of APLA, as she considers equipping teachers (psychologists, speech therapists, or pediatricians) with the necessary knowledge and tools as the best way to mainstream the topic into the school system, since teachers know the students best. She also pursued some of her own ideas and activities outside of the Center framework, which led her to travel throughout the Czech Republic to diagnose, train, and set up programs.
Once Katerina’s voluntary activities outside the State Consultancy Centers increased and her frustrations with the bureaucracy of the state center also grew, Katerina decided to found her own organization to carry out her ideas for broader social change. In 2000 Katerina founded APLA as a non-profit organization and, shortly after, dedicated herself full-time to this work. She is committed to continuing to infuse her organization with the flexibility, leadership, innovation and commitment to embrace autism from a holistic perspective, which the State Consultancy Centers were not able to achieve. Although she continues to leverage her connections to the state, she has built the degree of flexibility within APLA that is needed. She has transformed the societal response to autism in the Czech Republic, with APLA branches operating in several locations across the country. Her aim is to reach countrywide local presence and expand her model to other CEE countries. Katerina’s structured approach has the potential to become a role model for tackling intellectual disabilities beyond the field of ASD.