The Eastern philosopher Al Farabi believed that a virtuous society is one where there is room for the constructive use of the different skills and talents of all inhabitants. Happiness, thus, results from one’s connection to others and from having the opportunity to develop and use one’s skills. Unfortunately, doing so is easier for some more than others.
Globally, an average of one in 100 people are diagnosed with autism, a developmental condition that affects behaviour and communication. Autism is gradually ceasing to be seen as a disorder and deficit and instead, is increasingly being perceived as genetic makeup that is part of the unique fabric of society. Many people on the spectrum, however, struggle to lead fulfilling lives.
While encouraging autistic people to integrate in society through various programs that will enable them to make use of their skills, it is equally as important to find ways in which society itself can also adapt to autistic people’s needs. In other words, society should meet autism halfway. Cooperation and coordination between government, business, and philanthropy are essential if we want to construct an environment where everyone can flourish.
Using our experience from the Bulat Utemuratov Foundation’s ‘Autism. One World for All’ initiative in Kazakhstan and international best practices, we have identified three ways in which we can make a community, nationwide, and global philanthropic effort to create a more inclusive environment for autistic people using the science and resources already available to us.
1. Create an effective educational system around autism
According to national data, there are more than 175,000 children with special educational needs in Kazakhstan, of which about 9,000, or five per cent, are autistic. Globally, one in 100 children is diagnosed with autism on average, and one out of 36 in the United States. In Kazakhstan, the number of children registered with autism has almost doubled over the past five years, and the prevalence of autism globally has been increasing. As a result, there is a growing demand for specialists who can help autistic children live up to their full potential.
Focusing on creating an inclusive society, Kazakhstan’s government introduced a special education programme in 18 national universities to increase the number of professionals in the field, but the supply of instructors is still low compared to demand. Accordingly, philanthropy steps in where the government cannot and where businesses will not.
The Bulat Utemuratov Foundation responded to this demand by creating a network of Asyl Miras Autism Centers. Asyl Mira does not only consist of facilities but is an entire system that responds to the needs of society. The centres offer free services and early intervention programs for autistic children and their families, and constantly trains and develops the skills of its specialists through international knowledge sharing. Since the establishment of the Asyl Miras Autism Centers in 2016, more than 14,000 children have participated in the program and have had an improvement in skills by 2 times on average. As such, philanthropy must be entrepreneurial in spotting gaps to be filled, and versatile, to create entire ecosystems that can evolve on their own for the greater good and to help autistic people leverage their skills.
2. Raise autism awareness in overlooked sectors
When it comes to shaping an environment conducive to autistic people’s strengths and needs, many first point to reform in education and the workplace. While these sectors are vital in ensuring that autistic people have a good quality of life, it’s time to begin expanding the scope of autism awareness in sectors that are often overlooked by autism awareness campaigners.
Areas like retail, the digital world, and even medical fields apart from mental health still have gaps when it comes to creating environments that autistic people can easily navigate. Take dentistry, for instance. While an autism specialist will know how to properly interact with an autistic child, a children’s dentist may have difficulty doing so. This can be problematic both for child, parent, and for the dentist who may be unable to work as effectively.
If general education does not offer dentists, and other professionals in other fields, the resources to work with individuals with a different neurogenetic makeup, then this is where philanthropy should step in. In 2019 we launched the ‘Kids Dentistry and Autism’ pilot project jointly with the International Special Dental Exhibition and Almaty’s Dental Post-Graduate Institute. As part of the project, seminars were conducted for dentists on how to approach children with autism in multiple cities in Kazakhstan.
Our Asyl Miras centres also collaborate with universities to research and identify current issues in the field. Establishing open communication between academia and the world beyond is a powerful way to equip civil society with the tools needed to become informed, aware, and capable of having positive interactions with autistic individuals. Offices, hotels, website developers, and doctors can all look to academia for guidance, and foundations can act as constructive intermediaries between them, uniting the many different parts of society.
3. Foster international cooperation
Awareness, Acceptance, Appreciation, and Action are Dr Stephen Shore’s ‘4 A’s of Autism.’ In Kazakhstan, we have become familiar with Dr Shore’s research because of our annual ‘Autism. The World of Opportunities’ Conference, and we have become more advanced in our treatment of autism thanks to our collaboration with the Kasari Lab and the Marcus centre. International cooperation and knowledge sharing is the cornerstone of helping the world become more inclusive.
Communities and entire countries have different attitudes towards mental health. In Kazakhstan, there is a problem of access, lack of awareness, and stigma associated with mental or cognitive disorders, despite public and philanthropic provisions to provide services to autistic children. A recent study found that parents of autistic children face more stress and anxiety on average, and identified the importance of acceptance and support for their mental health.
The Kazakhstani society has benefitted from international interaction by becoming more open and accepting of diagnoses. Connie Kasari, Alexander Sorokin, and Stephen Shore are among the experts who spoke at our conference, inspiring trust among the conference participants, and a willingness to change for the better. Philanthropy made this international exchange possible.
Philanthropy is not only about donating directly, giving grants, or creating establishments. Sometimes, it’s about giving society what may at first seem like intangible gifts: fostering knowledge and promoting acceptance. Opening up to the world, allows a society to open up to its very own diversity too.
Almaz Sharman is the President of the Academy of Preventive Medicine and is the Chairman of the Board of Trustees of the Bulat Utemuratov Foundation, a multi-project foundation established in 2014.