By Mendee Jargalsaikhan
Our second guest of our UNTOLD podcast is Altangerel, CEO of the Autism Association of Mongolia. Over 800 parents were registered in the association and many of them joined from abroad. But they all share the same dream of an inclusive, equal society for their children, and they exchange their knowledge and experience with many other parents who are helping their children to overcome the challenges that the effects of autism bring along. Since autism is a recently introduced category of disability, our guest pointed out all major challenges – (1) no reliable statistics, (2) evaluation is new and costly, (3) no systematic feedback and monitoring of the development of autistic children, and (4) exclusion of autistic youth from employment.
The Discovery of Autism
In 2003, Altangerel went to Japan to study for a graduate degree along with her family – a spouse and their sweet little baby-boy. One day, the director of the Japanese kindergarten told them about the Japanese pre-school education system and asked if they could book an appointment for their son at the child development centre. For three days, childcare specialists played with their son and asked several questions about him. At the end, they explained autism to them and their son was placed in the autism spectrum. At first, she did not take autism seriously and thought that once her son became able to speak – this would not be a problem. However, she was glad about her son’s early diagnosis and the monitoring by Japanese specialists until she completed her degree (until her son was 6.6 years old). In hindsight, Japan has a well-established system of early detection of autism and regular evaluation of the child’s development. If she had been in Mongolia in 2003, the child would have been diagnosed with schizophrenia and directed to the Psychiatric Hospital in Shar Khad. She and her husband would have been traumatized, and now her son might have been suffering from side-effects of psychiatric medicine.
Joining out of Goodwill
When they returned to Mongolia in 2008, there was little understanding of autism. Doctors still included people with autistic symptoms in the mental disorder group and automatically diagnosed them with schizophrenia, which would be treated at the psychiatric hospital at Shar Khad. So, Altangerel followed the rule and met with Dr. Enkhtuya – who was surprised about the different symptoms of her son than other children with autism. At that time, Mongolian doctors already knew about autism being different from a schizophrenic disorder, but they did not know how to diagnose and evaluate the development of children in the autistic spectrum. This led Altangerel to join other parents experiencing similar challenges, and they established the Autism Association of Mongolia in January 2014. Their goal was clear: to increase public awareness about autism, to work together to advocate policy changes, and to support each other in dealing with a unique challenge – autism. It is touching to hear that a small non-governmental organization along with the Ministry of Education, Science and Technology reached out to 600 elementary school teachers, social workers, and psychologist to educate them about autism and the related pedagogy. Now, they aim to provide their training and handbooks to up to ten thousand educators between 2019 and 2024. Nevertheless, this great endeavor has been interrupted by the pandemic.
How Much Has Changed
“Changed, but” – she explained it would take time. In 2010, the ADRA, an international non-governmental organization, implemented the first project, which basically helped Mongolian doctors learn about autism. Altangerel told us the story of a doctor – who worked at the Psychiatric Hospital. After learning about autism, the doctor recalled their diagnosis of an 18-year-old man with schizophrenia in 1985. He had shown more symptoms of autism – it was a wrong diagnosis. And, even in 2010, a child with autism had to be diagnosed in the category of mental disorder in order to receive social welfare benefits and services. There is still no designated category for autism. This makes it difficult for any business entity to employ people with autism because it is considered a mental illness. Altangerel is hopeful that the state and business entities will find ways to open opportunities for people with autism. Many of them are talented, but they need an inclusive, understanding culture and attitude from the society. One of the significant changes would be the introduction of an inclusive educational policy – to provide a number of opportunities for disabled students to study together with their peers. Although it is difficult for public school teachers with overcrowded classrooms (50-60 students per teacher and classroom) to accommodate children with special needs, students who had disabled classmates will understand challenges and needs of their disabled friends. Altangerel stressed that this is a major step forward to develop an equal, inclusive society and to teach the principles of humanity to our children. If your child studies with a disabled peer, ask him/her to talk and help their classmate – do not advise them to stay away.
Advice for Parents with an Autistic Child
Science is still trying to figure out autism. Its cause is unknown. Therefore, if your child is diagnosed with autism, do not blame each other, or do not try to figure out what might have caused it. You would never find out. There is nothing to be ashamed of – as she sternly challenged to question why one needs to be ashamed. Rather think that God or Buddha send this child to you because you could raise a good person. Altangerel advised to focus on your child, observe him/her and help them to get over different types of challenges. According to Altangerel, there are three types of autism – (1) classic – autistic disorder, (2) Asperger (milder), and (3) pervasive one. Autisms need to be diagnosed earlier, but parents lose time for two reasons: For one, they do not know. Particularly with regard to boys, many parents assume their child is slow in talking and explain this with the father having been a late-talking child. For the other, they do not want to think about autism because they presume that they are all healthy, or for superstitious reasons. Therefore, parents should watch their child carefully and observe their linguistic development, socialization (social interactions), and mental development (learning and thinking). Throughout the podcast, our guest has emphasized the importance of an early diagnosis and evaluation of the different skills of the child, as well as working with the child to improve those lacking skills.
Covid-19 Impacts on Autism
The impacts are harsh. Her son – Khuvit – studies at the Anima Art School, which is named after the well-known artist Yadamsuren. Before the pandemic, Khuvit used to be living in the art world (drawing and listening to music) at the art school. Now he stays bored in his room and, just for a moment, sniffs fresh air through the window. He seems sucked back into isolation. From an educational perspective, repetition is most important for children with disabilities to move forward and develop. Altangerel sighed heavily, the pandemic is affecting all children with disabilities – their learning is in regress. Since 2015, Khuvit is studying at the Anima Art School, one of the few art schools that welcome children with disabilities.
This month is the international Autism Awareness Month. Altangerel and her colleagues have been working tirelessly to educate many people to understand the specific challenges of children on the autistic spectrum. Many of her activities have been cancelled or postponed due to the pandemic situation. We hope things get back to normal, the association resumes the educator training, and her son Khuvit and many other children with autism can go back to their schools. And, we could not wait to see Khuvit’s paintings. Yes, we are all different, but we should respect and help each other, as Altangerel reasons throughout the podcast.
The Untold podcast and blog post are made available by the generous support of the Friedrich Ebert Foundation in Mongolia. We also want to thank our editor Riya Tikku.