Autism: An unwarranted stigma

Forget treatment, Autism is rarely even correctly diagnosed in Pakistan.

ISLAMABAD:

Sadia clearly remembers the day, almost a year and a half ago, when a team of doctors in Karachi assessed her two-year-old son and declared him autistic.

Autism, a developmental disorder, the symptoms of which usually exhibit during the first three years of life, is characterised by difficulties in social interaction and communication as well as repetitive behaviour and hyperactivity.

In Pakistan, parents whose children are diagnosed with autism have to grapple with challenges such as lack of awareness, a dearth of professional medical expertise, almost nonexistent health care and, most of all, social stigma. These challenges lead to denial and the isolation.

Autism and related developmental disorders, such as Asperger’s Syndrome, which are collectively called Autism Spectrum Disorders (ASD), are estimated to affect one in every 150 children worldwide. The extent of ASD incidence in Pakistan is not known due to lack of reliable data.

Sadia herself belongs to the medical profession but admits she did not know much about autism when her son was diagnosed. “When I read the articles available online, I felt as if someone had shot me.”

Although autism is linked with early brain development, scientists have not yet completely pinned down a cause for the disorder.

Therapies that deal with behaviour modification, speech, social skills and motor movements are the best available approaches for the treatment of autism, said Major (retd) Umair Bin Tahir, the director of Step To Learn (STL), an autism resource centre in Islamabad. Recovery is possible especially if the disorder is diagnosed early, he said. In fact, children with ASD have recovered and gone on to become excellent artists and musicians. Satoshi Tajiri, the creator of the popular Pokemon series is autistic, as is Jazz prodigy Matt Savage.

Caring for children with autism is a full-time job, and it requires great moral courage and stamina on the part of the parents.

However, a majority of cases in Pakistan don’t even get diagnosed. Doctors lack the expertise to diagnose ASD and family members usually deny the existence of any brain-related disorder to avoid social stigma.

At government institutions, ASD is often incorrectly lumped with mental illnesses.

Farzeen Omer, an Applied Behavioural Analysis (ABA) specialist at Rawalpindi’s Green Valley autism school, said “Universities should introduce autism-related courses in psychology curricula and establish on-campus medical centres to provide free-of-cost services and guidance to autistic children and adults.”

Fazli Azeem is living proof of what awareness and treatment can do. A 31-year-old graphics designer and educator from Karachi, he has been advocating for Autism awareness since he was diagnosed with Asperger’s in 2006.

“Every child with autism has the potential for growth,” said Azeem, who is currently studying in Boston. “Parents should never give up on the education of their child and should try to connect with international support networks for autism so they don’t feel alone in this struggle.”

He will be representing Pakistan and South Asia in a panel discussion at the World Autism Awareness Day 2013 ceremony at the United Nations in New York on Tuesday.

Most importantly, social attitudes must change.

“These kids are extraordinary, please do not label them as “mad”,” Sadia said.

Her example is proof of the progress autistic children can make with the right support. Thanks to therapy, her three-year-old son is now able to eat by himself.

“We have changed at least one “No” to a “Yes”,” Sadia said proudly. “We have to fight till the very end.”

More information

Resources for information on Autism services in Pakistan

• The Pakistan Autism Meetup Group – This online community brings together professionals and parents of children with Autism Spectrum Disorders (ASD) http://www.meetup.com/autism-77/

• Step to Learn – An Autism Resource Centre based in Islamabad. http://www.stlpak.com/autism-resource-center.html

• AutismPakistan.org – Website created by Autism awareness advocate Fazli Azeem, it provides links to aid with autism awareness http://www.autismpakistan.org/

• Green Valley School House 17A, Phase V Bahria Town. Islamabad.0333-5534484

• Ma-Ayesha Memorial Centre, Near hill Park, Karachi Phone: [phone]

Published in The Express Tribune, April 2^nd, 2013.