Alvinia Christiany and Teman Autis, The Journey to Autism Advocacy

Just like the other days, that afternoon was lively. I had to meet this unique child twice a week in an English class almost two decades ago. This 5th grader is Ferdy, one of my brightest students back then. I call him unique because his appearance was neater than his classmates and he often performed self talk as if he belongs to another exciting world.

Quite uniquely, this habit—which looked a bit strange to his classmates—had not affected his comprehension of English material at all. To be honest, Ferdy in fact showed superiority compared to his friends who were already in junior high school. He is special in his own way.

Later I found out that he was a child with autism so he appeared different from his other friends. In Ferdy’s case, based on what I once read, he seems to have hyperlexia, that is a language disorder that involves a child having extraordinary reading abilities in early childhood even though he may not have the language and speaking skills appropriate for his age. It is not surprising that his foreign language command (English) is quite solid.

During the learning process, Ferdy’s friends had often looked at him with strange impressions as they didn’t have the faintest idea what he was experiencing. While it didn’t escalate to ridicule, their response had tended to be negative, which I instantly dismissed in the best possible way with suggestions and messages for them to maintain their attitudes and words towards Ferdy who was different.

Understanding autism with optimism

Different, that’s the key word. So far, children with autism are often mistakenly thought of as being weird and even idiots. The differences in behavior they show—or sometimes the same words repeatedly uttered—often trigger ordinary people to conclude or judge that these differences are disorders that are worthy of suspicion so that autistic children should be avoided.

It is this misunderstanding that Teman Autis is concerned about. Aimed at correcting that misinterpretation, the community would like to serve as a bridge to provide trusted, integrated information about autism. Ratih Hadiwinoto the founder and Alvinia Christiany the co-founder of Teman Autis have high hopes of raising and increasing public awareness and consideration about autism.

Founded in 2017 initially as Light It Up Project, Teman Autis now has a special portal temanautis.com, which is an integrated website that supplies various information about autism. This website was designed in a simple and clean appearance with the aim of making it easier for people throughout Indonesia (especially families who have members diagnosed with autism) to obtain valid and reliable information about autism without having to meet face to face, that is certainly more cost effective too.

The website is of paramount importance because it brings together clinics or supporting facilities needed by people with autism without worrying about distance, space and time. The online platform allows those in need to access a variety of information anytime and anywhere without having to come to Jakarta.

Under the name Light It Up Project, Ratih and Alvinia in conjunction with other volunteers have held two events related to the autism campaign. The first event entitled Light it Up Fun Walk was held on July 30, 2017 in the Sudirman Car Free Day. This fun walk was attended by children with autism and their parents or guardians.

On that occasion, the Light It Up Project team also distributed brochures containing information about autism as a positive campaign to build public awareness of the issue so that they understand autism and those living with it more considerately and appropriately. One of the volunteers carried a poster that says:

Autism is not a disability, it’s a different ability.

This short sentence emphasizes that every child with autism does not deserve to be underestimated, let alone bullied, or even simply called disabled. Quite the opposite, Ferdy my student has evidently shown that autistic children actually have their own unique excellence in particular areas compared to other children of the same age and even those older. This is why it is important to understand autism with optimism; that those with the disorder have potentials and that accepting them is a manifestation of human rights enforcement.

Empowered people with autism

As a follow-up to the first event, the Light It Up Gathering was held on March 10, 2018 in South Jakarta. In this gathering, a seminar was carried out on Autism 101. The seminar was initially intended for volunteers only, but owing to the huge public interest, the committee decided to allow general participants to come.

The success of holding these two events made Ratih and the team decide to continue the Light It Up Project to generate more real contributions to the society. This reformulation had sparked the birth of Teman Autis, equipped with a clearer vision, mission and contribution to wider public.

It is imperative to understand that autism is not a mental disability, but a developmental disorder. Autism is different from schizophrenia, bipolar disorder, depression, anxiety, or personality disorders. This is stated in Article 4 paragraph 1 letter (c) of the Act on People with Disabilities as our guide for behaving and responding to people with autism.

So to say, we cannot deny that children with autism can work and be successful in life. They have the energy to progress in their own ways and potentials. Susan Boyle is one example to note. This Scottish singer rose to fame after appearing on British Got Talent as a contestant singing I Dreamed a Dream.

Even though she did not win the competition, Susan later won many awards and also gained economic success. Of the dozens of awards that she had participated in, she won at least seven. Little did people know that Susan apparently suffers from the Asperger’s syndrome, an autism spectrum with a high IQ but social difficulties. As a child, she was wrongly diagnosed as having brain damage instead of autism.

Another example that people with autism can live fully empowered is Stephen Wiltshire. Wiltshire’s story captured my attention when I read Oliver Sacks’ book called An Anthropologist on Mars. A professor of neurology and bestselling author, Sacks highlights in this book people with great work despite having neurological problems—one of whom is Stephen Wiltshire.

Stephen Wiltshire is said to be able to draw buildings in great detail even when he only sees them once. He could produce detailed images by relying on his sole memory. In addition, he also has a strong memory of the songs he hears which he can easily repeat with high accuracy.

On account of this remarkable ability, Wiltshire was able to visit important cities all over the world, including Rome, Hong Kong, Frankfurt, Madrid, Dubai, Tokyo, and New York. Since then, Stephen Wiltshire has often been the subject of documentary films, one of which is Billions of Windows which was screened in London on November 13, 2019.

Teman Autis, driving to sustainably caring life

In this context, what Alvinia Christiany and Teman Autis have done is truly worthy of appreciation because they want people with autism, both children and adults, to have the opportunity to grow and progress together as part of the society. As one of the posters in their City Walk states, “Autism Acceptance = Human Rights“, which implies how rejecting children with autism means a violation of human rights.

The step that Alvinia took may be small but turned out to be incredibly helpful for many people all over Indonesia. Providing whatever information needed by families with autistic children, especially relevant clinics, represents a spirit that can drive Indonesia’s progress through diversity in the hands of young people. This is but a genuine effort to build the nation by sharing benefits for the society in line with their abilities or potentials, competence, and especially benevolence.

It is only fitting that Alvinia was then rewarded by PT Astra International, Tbk with Semangat Astra Terpadu Untuk (SATU) Indonesia Awards in 2022. Alvinia was named among five other winners to receive the prestigious award. This is an honorable appreciation that other companies need to emulate in order to encourage young people alike to empower their potential for benefits sharing for wider public all over the archipelago.

Teman Autis clearly embodies the energy of friendship—just like the name suggests, spurring us to remain optimistic and confidently rise together knowing that obstacles are inevitable. Things may not be the best right now, but be certain that changes are imminent. From the name itself, Alvinia would like everyone to be friends—who can chat and help out regardless of any boundaries.

Teman Autis does propose the idea that we should go hand in hand to strengthen each other instead of becoming an opponent with enmity in competition. Only by being friends can we carry on with our life and achieve much success with collaborative work on the basis of unending care and sustainable compassion.