More than Autism: Options for Autistic Children in Chiang Mai
More than Autism: Options for Autistic Children in Chiang Mai
Two pairs of hands rest upon a table, illuminated by an afternoon sun that softly filters through the curtains. One set of hands belong to Terdpong Sripet, or kru Pet, who’s long, angular fingers gently clasp the soft, playful palms of Lucca, an 11 year old Thai boy with glimmering eyes and a face that seems to only switch from a loving smile to a smirk of curiosity. For the moment, Lucca has calmed, transfixed by teacher Pet’s careful touch and smile. Kru Pet slowly begins to count, and Lucca’s brow twists into furrowed concentration.
Lucca has very limited communication skills. Though Lucca seems to understand the situation, as kru Pet counts from one to ten, and that he should respond in some way, his response comes in the form of a sound, that to us has no meaning.
While kru Pet and Lucca practice together, Keiko Samuels, a psychotherapist also seated at the table, adheres two tiny sensors to locations on Lucca’s head.
“This used to really bother him,” says Keiko, applying small dabs of conductive paste to the sensor, and placing it gently on a spot just above Lucca’s ear, “he doesn’t mind it so much anymore.”
The sensors are connected to a tiny electronic amplifier, which feeds into Keiko’s laptop computer. Lucca is on the autism spectrum, and on this Tuesday afternoon, like the last several Tuesday afternoons, his mother has made the three hour trip from Chiang Rai to OT Freeland in Mae Rim for Lucca to receive neurofeedback therapy, a type of biofeedback that allows the brain to monitor its own activity and self-adjust to problematic brainwave patterns. After about 45 minutes, they will make the three hour drive home.
Kru Pet founded OT Freeland (OT, for occupational therapy) in 2012 with a team of local occupational therapists from Chiang Mai University. Together they formed the only private clinic in Chiang Mai province that specialises in therapy for children on the autism spectrum, while simultaneously functioning as a K-6 licensed educational institution.
“For about three years after graduation from university I was working several different jobs and working one day at Rajanagarindra Institute of Child Development (RCID) with children with developmental disorders,” explains kru Pet. “The word got out that I was doing this kind of work, and that I worked with children with autism, and suddenly I would get requests from families to work with their children. I worked as a gardener, as a driver, and other random jobs but at the same time began to provide therapy for children with autism on a freelance basis. Together, with some of the other occupational therapist friends I made through university, we started to help more and more people. We raised the money, and bought this land here, and that’s when we went from freelance, to freeland, and started OT Freeland.”
Rajanagarindra Institute of Child Development (RCID), the white building on the canal road resembling a giant grand piano, was established in 1994 and assists children with developmental disorders and is the only governmental institution in Thailand that offers such diagnostic and therapeutic programmes. Its capabilities have made it a valuable resource for families of special needs children from all over Thailand and Southeast Asia, who travel great distance to receive support for a number of disorders including schizophrenia, cerebral palsy, and a range of behavioural, developmental, physical, and other challenges best treated during childhood. The centre has also become a tremendous resource for families of children on the autism spectrum as autism continues to see an increase in prominence in Thailand and world-wide.
Currently, the Ministry of Health claims an estimated 200,000 Thais are on the autism spectrum, and about one out of 1,000 children. This figure is considered to be dramatically low, however, in a country where so many are not aware of the nature of autism and fail to even receive a proper diagnosis. “This prevalence rate is suspected to be an underestimation of the true numbers due to limited knowledge of the disorder,” says Autism Awareness Thailand.
However, the capabilities of RCID and its international reputation have inundated the centre with patients, and when OT Freeland opened in 2012, it represented a whole new avenue of support for Thais and families from abroad who were previously left waiting months for help. The clinic generally charges 13,000 baht a month for daily sessions including meals for children. This cost is significantly less than sending children to specialised international schools, an option that many wealthier families elect, even though most international schools are not equipped with adequately trained personnel or curriculum designed for special needs students.
As a private institution, OT Freeland also offers a range of therapies and a flexibility not found at a government institution. One such therapy is neurofeedback, a technology that was first introduced to OT Freeland by psychotherapist Keiko Samuels, after retiring from her practice in California and moving to Thailand. Keiko works on a volunteer basis at OT Freeland, bringing the technology with her, and is seeing results first hand.
“In Lucca’s case his parents have told me that his communication has really improved, he uses more words, not just one word sentences anymore. He can join with other people and he can focus and sit in the classroom. These days Lucca is attending public school, and although he doesn’t always understand everything in the classroom or can participate in every activity, he loves going to school.”
Keiko’s journey leading up to providing neurofeedback to children on the autism spectrum in Chiang Mai is rather happenstance. The technology has a range of uses, and historically began as a therapy for seizure disorders, and eventually ADHD and post-traumatic stress disorders experienced by Vietnam War veterans. Keiko purchased the equipment for her own personal use to help with trouble sleeping. The technology has such widespread uses for treatment of anxiety, depression, addiction, and other neurological issues that Chiang Mai even has its own private Centre for Neurofeedback Therapy on Nimmanhaemin Road, which offers sessions to adults. After retiring as a psychotherapist in California, Keiko came on holiday with her husband to Southeast Asia for two months. As so often happens, the couple fell in love with Chiang Mai, and made it their new home.
A local noodle shop owner that Keiko frequented in Chiang Mai learned that she had neurofeedback equipment, and asked her if she would be willing to meet a young man in a rural village.
“I met a teenager, 18 or 19. He was big, and he was restrained. He was wearing a helmet, and gloves, like boxing gloves, because he hits everything. He was never trained in anything, he had never been to school because he couldn’t be contained in a classroom. The school refused him, even though you aren’t supposed to be able to do that in Thailand. So they kicked him out of normal school, and it was the family’s responsibility to take care of him, they couldn’t afford to do anything about it or even knew what to do. Neurofeedback is good for a developing country in a situation like this, it doesn’t require a complex diagnosis to use it correctly and for the child to benefit from it. All of the expertise is in the machine, and that’s why I started doing this type of work.”
As Dr. Samuels continued working with autistic children administering neurofeedback in cooperation with a handful of tiny child development clinics in the area, she found the neglect of individuals with developmental disorders-especially autism, to be quite common in Thailand, particularly in rural areas.
“In Thailand, it really becomes a stigma to have a special needs child in the family. Once there is one autistic child in the family, the whole family is a part of it. Everyone is so stressed all the time. You can’t take the child anywhere, they start tantrums and everyone will look at you. They don’t reach out. They don’t get the support that they need. A lot of times the father can’t handle the stress and takes off, and the mother is left there – there are a lot of single mother and autistic child families. If the mother is lucky, she will have two sets of grandparents that will help or take the child and raise them. That’s how most of the village kids are raised. The grandparents don’t understand why they are the way they are, but they will take care of them. They are fed, but they are not trained, and they have no skills. They don’t have a career or anything. A lot of them are still in diapers because they don’t have anyone to take care of them. That’s the situation that exists in this country.”
Neurofeedback is just one of many therapies used at OT Freeland throughout an individualised schedule of activities, classes and therapies for each child. Eight teachers and therapists currently work to support about thirty students, providing a teacher-student ratio that is much more suited to working with special needs students than what is typically found at public schools.
The students’ time at OT Freeland is spent on a mixture of therapies, exercises, and study classes. Horse therapy, art therapy, and musical therapy are interspersed throughout the week, combined with self-maintenance classes that help children with day to day activities like getting dressed and daily hygiene, along with classes in speaking, reading, and other traditional school subjects.
OT Freeland’s progress with autistic children’s skill sets could be attributed in part to their attention to each student individually and their dynamic curriculum that does not group students into incongruent classes with incompatible skills.
“Every student begins with a thorough assessment with a trained evaluation specialist in which we identify their social, behavioural and lingual strengths and challenges,” explains therapist Aekachai Ku-na, or kru Ko. “From there, therapists and teachers work together to determine how to integrate them into our curriculum. This assessment and personal attention continues throughout their time at OT Freeland during our weekly case meetings, where each student and their progress is discussed.”
“I have one philosophy,” says founder kru Pet. “We have to change something every week.” This philosophy has become an integral part of the curriculum at OT Freeland where adjustments are made to each students’ schedules for the upcoming week during the case studies, and is the kind of attention that is simply not available at public schools.
As Lucca finishes up his neurofeedback session with Dr. Samuels, he dons a floppy safari hat and sunglasses, protection against light sensitivity often experienced by autistics, and joins his mother on the steps outside. Across the hall, two classes are in session. The tiny classrooms occupy about five students each, in one classroom students are learning how to fold a t-shirt, each of them practicing neatly folding their own garment on their desk, while in the other classroom, a teacher walks students through the Thai alphabet with flashcards.
Learning what life is like for students at OT Freeland is quite possibly the most challenging task for therapists and teachers. Autism is different for every individual, often resulting in a variety of hyper sensitivities to light, sound, and touch. The act of simply sitting in a classroom and knowing what to look at or listen to can be incredibly confusing for an autistic child, as the clock and the teachers voice hit their ears at the same volume, and the chair they have to sit in digs into their back making them extremely uncomfortable.
“I work with kids before they even know how to sit in a classroom,” explains therapist Samrith Khamruangrith, or kru June. “I see progress in small steps. I’m very proud of what I do. We work together on attention spans, hand-eye coordination, how to focus in the classroom, issues like that. The smallest things can be the biggest challenges for some of these kids. One of my six year old students, they had real trouble just using a pen or pencil, they didn’t understand how to hold it without hurting their fingers. They had a terrible attention span, and anger problems. After just two weeks of therapy we saw real progress, and discovered that the student, who came from a musical family, had a real love for music. Recently, the family sent me a video clip of this student playing the piano and singing with their friends. That clip, it meant everything to me to see them doing that.”
This patience and constant attention and observation of children with autism is what OT Freeland offers that the public school system cannot. In 1999, Thailand proclaimed it the “Year of Education for Persons with Disabilities,” enacting the National Education Act and setting a national policy that “any persons with disabilities who wish to go to school, can do so.” While the act protects the rights of persons to disabilities by making their right to education official, it still results in countless special needs students being placed in educational institutions that are ill equipped to offer them proper education and care.
“It is good that the public school system supports autistic students, and that it’s the law that every school has to accept every student,” says Jintana Hemthanon, progamme coordinator for the Dulabathorn Foundation, a foundation that helps place special needs students in care programmes outside of the public school system. “But, they need people to support them in order to learn. In Thailand, you have so many special needs students, and there aren’t enough teachers in public schools. They just teach them in a very general way. That’s why our foundation was created, to help these kids that are in a system that was not designed for them.”
“I have one student, a 9 year old now, from a poor family_ often times poor children end up in the public school system because that is their only option. He has autism, and ADHD. His mother passed away from HIV, and his father is living with HIV and is an alcoholic. Nobody was taking care of him, or teaching him, and often times his father had to leave to work and would leave him with their neighbours. At first, when we started working with him at the foundation, he would disappear when we came to pick him up. He’s been with us for two years now, and these days, when we come to pick him up he is waiting for us. Sometimes if we’re late to pick him up, he asks ‘Why are you late!?’ he wants to be at the foundation, to be there and play with other kids.”
Though the challenges that individuals with autism face are inconceivable to those without it, it is proven that many issues can be coped with through training and learning, especially if started at a young age, and can eventually lead to productive livelihoods with manageable symptoms. As Thailand slowly begins to adjust its attitude and families feel less threatened by the social stigma of having a child with special needs, organisations like OT Freeland and Dulabhatorn Foundation are committed to offering support to anyone that seeks them out.
“The biggest improvement I’ve seen in the three years I’ve been with the Dulabhatorn Foundation,” says Jintana, “is that families are now learning where to go, and are sharing information with each other.”
Such was the case with the parents of seven year old Gear, who dealt continuously with communication issues, being socially difficult, and an inability to make friends and focus for a period of time. Gear’s family sought out OT Freeland after it was recommended by parents of another autistic child.
“He has many friends now,” says Gear’s mother “He can answer any question asked of him, and he enjoys teaching and playing with other students. This place, OT Freeland, feels like such a caring centre, it really doesn’t feel like a business at all.”
This feeling of care and patience permeates the grounds of OT Freeland. Where a group of children around a table sharing a book, a child enjoying the simple pleasure of a hoola hoop, or the sensation of running your fingers through a horse’s mane, is much more than what it seems. At this tiny centre in Mae Rim are children constantly fighting to communicate how they see the world, and how hard it can be to function in a society that doesn’t understand them. Through tiny victories, one by one, autistic children can learn to overcome certain struggles, but it is not easy. These are the victories that the doctors, therapists and teachers at places like OT Freeland and Dulabhatorn Foundation live for, the reminders that a neurological condition does not define a person, it is just another way to see their strength.
Some names in this story have been changed or remain anonymous out of respect for the privacy of individuals and their families.