Online support for people affected by Autism Spectrum Disorder – helpful or harmful?


According to Hasfizal (seen here with his son Umar who is on the spectrum) Autisme Malaysia has over 70,000 members and seems to be growing exponentially, which is a good sign because it means people want to learn and understand autism better. — HASFIZAL MUKHTAR

Online support is an important tool for people who are affected by autism spectrum disorder (ASD) so that they know they are not alone, and can receive and give emotional support to others who may be facing similar challenges in their daily lives, and find solutions together. Whether an individual has ASD, or has a family member, such as a spouse, parent, sibling or child with ASD, peer support is essential.

Peer support online group Healthful Chat advises its community to share views regarding the signs of autism, therapies that have worked, to laugh and cry with others who can understand their personal struggle each day, and to make lifelong friends.

While there are numerous sites such as Healthful Chat, it is sometimes hard to differentiate between credible sites and ones that are trying to hook you in for all the wrong reasons.

Finding a local online support group is another challenge, however, they do exist. The Autisme Malaysia Facebook Group, for example, is a local online support network where you’ll discover a thriving online community.

The page was set up by Zamri Tembol, a 47-year-old engineer from Semenyih, Selangor, in 2010.

Zamri, with son Harris, says he desperately wanted to learn from other parents who had more experience in raising a child with autism. — ZAMRI TEMBOL
Zamri, with son Harris, says he desperately wanted to learn from other parents who had more experience in raising a child with autism. — ZAMRI TEMBOL

“I had very limited resources to turn to, and I desperately wanted to learn from other parents who had more experience in raising a child with autism,” said Zamri whose son, Haris, 18, was diagnosed with autism and attention deficit hyperactivity disorder (ADHD) at age three.

Zamri said that it was hard to find information back then, especially from a local context or pertaining to our culture. “Most of the information came from overseas, which was not always helpful. I was hoping the group would be able to help other parents too. I never expected it to grow to be more than just online support.”Community spirit

Zamri shared that over the years, the group has gone on to organise education workshops for parents, and there have been collaborations with other groups including non-governmental organisations (NGOs), universities and government agencies. It has also carried out awareness campaigns, and arranged many social activities such as festive gatherings, sports meets and picnics.

According to Autisme Malaysia’s current administrator Hasfizal Mukhtar, 44, the group currently has over 70,000 members, and seems to be growing exponentially.

“This is a good sign because it means people want to learn and understand autism better, they want to know more about others’ struggles. This encourages families to come forward and share, and not hide away family members at home.“Social media is also a powerful tool that society can use to get the attention of policy makers when it comes to adopting mechanisms that can support the autistic community,” said Zamri, who feels that Autisme Malaysia has been very useful in providing a platform for families not just to share useful information, but also personal stories (both triumphs and tragedies) and achievements (regardless how small or big).

“These parents go through challenging times. And though the kind of sharing on the FB group may appear trivial to an observer, this sort of sharing can often be a huge thing for those affected,” said Hasfizal, whose eldest son 20-year-old Umar has ASD.

“For example, parents could be facing an everyday problem like not knowing where to send their autistic child for a hair cut, or how to find a good dentist who is familiar with or friendly in treating autistic kids ... this is where the group can share helpful local information.”

The FB page is peppered with lots of tips and things from mostly parents – inspirational articles, play activities, recipes, announcements on workshops and events, and children’s achievements.

Hasfizal says: “We generally receive positive feedback on the FB page. Some use the group as ‘a shoulder to cry on’, since there will be peers who understand and empathise with them, and can provide moral support, if not advice.”

While Hasfizal is grateful for the FB group and other social media channels, he feels that families are in need of other forms of support too.

“Parents need to be resourceful. They need to have a close relationship with real life support groups, teachers, the school which their child goes to, therapists, government agencies, and so on.

“It’s kind of unfortunate for us here in Malaysia because support from various parties is not well integrated. I’ve also noticed that many parents tend to have this attitude of ‘what help can I get for my autistic child’ and lack the attitude of ‘what kind of support can I give to the autism society’,” said the accountant who is married with three children.

Hasfizal echoes Zamri’s statement saying that 17 years ago when Umar was first diagnosed, there weren’t many resources or support groups for him and his wife to turn to. But he is thankful that the National Autism Society of Malaysia (Nasom) was around, and took in Umar.

Nasom is a national charitable organisation that strives to provide a range of support services to assist people living with autism, especially children and their immediate family members. It was founded in 1987.

Hasfizal said: “We went to Nasom and it was there that Umar’s musical talents were discovered.” The young lad now has made two solo albums and is quite a talented performer, having performed at festivals and events around the world to promote autism awareness.

More avenues, but be wary

Hasfizal says that these days there is much better access to information and resources. “One can just google any information. Sharing information has also become tremendously easy via social media and smartphones. However, getting information is just a small part in the big picture,” he opined. “Honestly speaking, I feel that technology can only take you so far. At the end of the day what one needs is the human touch.”

Dr Daniel Leong, 39, who was diagnosed autistic at the age of 31, leads the AIM High Peer Group, which is made up of adults with autism who enjoy communicating via WhatsApp.

Leong, who is a full-time advocate for autism, has been managing the group since last year. There are currently only about 40 participants in the group but Leong is ambitious and hopeful that the numbers will grow.

An offshoot of AIM (Autism Initiatives Malaysia on FB), the peer group organises activities and webinars on various topics such as “how to read body language”, “building team work” and “relationships”.

“It’s important to have peer groups because one is able to get emotional support, as well as get practical solutions. It is also good for networking, and you can refer professionals or organisations that are offering assistance, for example, job coaching,” said Leong, citing Aspies Adulthood as another such online group that encourages peer support.

Leong also feels that adults with autism should try joining special interest peer groups, such as boardgame, roleplaying and writing peer groups, so they are able to venture out of their comfort zones.

“It’s important, however, to have a buddy with you, so he or she is able to watch out for you. And it’s important that you listen to them because some behaviour can be deemed inappropriate or misunderstood easily. So please listen to your buddy.”

Feilina suggests that people go to sites or forums that are affiliated with a respected school or society just to be safe. — AZLINA ABDULLAH/The Star
Feilina suggests that people go to sites or forums that are affiliated with a respected school or society just to be safe. — AZLINA ABDULLAH/The Star

Chairman of Nasom, Feilina Mohd Feisol, feels that one of the biggest challenges with autism specific online support groups is that many are not verified or able to provide credible information.

“Without a doubt, support groups are helpful,” Feilina said, “especially for families which are starting out and need support and encouragement in the early stages. Many of them don’t know what to do or where to start.” However, according to Feilina, there are numerous shady and dubious people out there too: “The types who are peddling snake oil, for instance ... you don’t want to be duped into believing something because you are in need of assistance!”

Feilina advises caregivers to be smart when it comes to making decisions.

She said: “To date there is no known cause or cure for autism, and people often take advantage of this. You will come across numerous suggestions, from gluten-free food, to increasing the amount of magnesium in your diet – many of these things may help but there is such a wide spectrum of suggestions and ‘solutions’; one really has to figure out what works and what doesn’t for your own child.”

Feilina suggests that people go to sites or forums that are affiliated with a respected school or society just to be safe. She recommends national autism websites such as Australia’s Aspect (www.autismspectrum.org.au), Britain’s NAS (www.autism.org.uk), and the US Autism Society (www.autism-society.org), instead of randomly choosing sites which offer miracle cures. (Note: Although the delineation between the two has become blurry in recent years, as a rule of thumb, opt for sites with “.org” instead of “.com” if you are ever doubtful about a website.)

Feilina warned: “Just because someone claims to have credentials, doesn’t mean he or she is legitimate. These days anyone can fake certification ... it is getting very scary out there.”

Tech that enables

Feilina is thankful for the strides in technology that have encouraged and empowered people with ASD, especially in terms of communication.

“Children are somehow really good with technology,” she said, sharing about her own son, Naim, who is now 22 and on the autism spectrum.

“In 1999, when he was first diagnosed, there were no technological resources at all here in Malaysia – no Google, no handphones, no tablets. Then in 2010, we got our first iPad. We had a speech therapist who recommended the app Verbally, which helped us a lot.”

Verbally is a free augmentative and alternative communication aid for people with a speech disability caused by such things as apraxia, stroke, and ASD. It is a free iPad app for anyone who needs an assistive speech solution.Electronic tablets, according to Feilina, have made things much easier and are much more effective than using flashcards. She feels that because people who have ASD are more comfortable “living in their own bubble” they don’t always enjoy social interaction, and so gadgets are much easier to deal with.

Feilina is excited because a growing number of tech-related efforts are being made to empower the local autism community. Recently a memorandum of agreement (MOA) was signed between Nasom and Universiti Teknologi Mara (UiTM) for the first-ever resource centre in Malaysia, the National Autism Resource Centre (NARC).

“There are many local universities doing research and studies pertaining to ASD, but no one knows where to go to find them. With NARC, we will be able to consolidate all the information in one place,” she explained.

Nasom is also a representative of the Asean Autistic Network, and recently the UN commissioned a mapping project to track progress in these countries.

“All 11 countries Asean countries are represented and it is a big initiative which hopes to map out Asean Autism, in terms of what has and has not been done here,” explained Feilina, enthusiastically adding that at the end of the month there will be a two-day workshop to collate data and listen to policy recommendations. Without the current tech infrastructure, none of this would have been possible, and the future for the autistic community will hopefully benefit from it soon.


   

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