World Autism Awareness Day 2013 – Autism: An Unwarranted Stigma

An edited version of this article was first published in The Express Tribune on Apr 2, 2013.

Islamabad – The agony and frustration caused by social pressures and ignorance only briefly surface in Sadia’s voice. Most of the time when she speaks, the anger and pain are replaced by a more powerful sentiment: the determination of a mother who has vowed to fight for the future of her child.

Sadia, who wished to be identified by her first name only, remembers clearly 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 whose symptoms usually exhibit during the first three years of life, is characterized 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 major challenges such as the lack of awareness about the disorder, a dearth of professional medical expertise, almost nonexistent affordable health care and, most of all, social practices that not only hinder early diagnosis of the disorder but also lead to its denial and the isolation of families in which a member has autism.

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 belongs to the medical profession but admits she did not know much about autism when her son was diagnosed. Her initial research on autism left her stunned.

“I did not know the severity of the issue,” Sadia said. “When I read the articles available online, I felt someone had shot me.”

Every online resource announced the same bitter truth all parents whose children are diagnosed with autism come to find out eventually. Although autism is linked with early brain development, Scientists have not yet completely pinned down on a cause for the disorder. Therefore there is no absolute cure.

But that does not mean there is no hope, as Sadia has found out ever since.

Therapies that deal with behaviour modification, speech, social skills and motor movements are the best available approaches to recovery and treatment of autism, said Major (retd.) Umair Bin Tahir, the director of Step To Learn (STL), an autism resource and rehabilitation centre in sector I-8, Islamabad.

Dietary interventions and medicine for issues associated with autism are not medically approved and often have adverse side-effects on the children’s health, Tahir said.

Recovery is possible especially if the disorder is diagnosed early, he said. In fact, children with ASD have recovered and went on to become excellent artists and musicians. But it requires a Herculean effort.

Cases of children with autism are usually unique, but these children are generally disturbed by minor changes in their environment. This could get annoying for parents who are not educated enough to tolerate the behaviour of children with autism, Tahir said.

Most of the therapies the children learn at a centre or hospital have to be repeated at home to be effective. Caring for children with autism is a full-time job and it requires great moral courage, and stamina on the part of parents.

Autism awareness for the general public and education for parents is really important, which is why the United Nations has designated April 2 as World Autism Awareness Day.

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

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

In the absence of state-level support, however, Pakistan’s private sector and individual activists offers a ray of hope.

The Pakistan Autism group on the website Meetup.com, with over 700 members, has become an online support network for Pakistani parents where they share experiences and ask for medical advice.

Schools and centres such as the Ma-Ayesha Memorial Centre in Karachi, Green Valley School in Rawalpindi and STL in Islamabad are providing rehabilitation services for autism.

But there are some other centres and consultants who have converted autism treatment into a for-profit business, making it difficult for low- and middle-income parents to afford it.

This increases the need for state support in autism treatment, Farzeen Omer, an Applied Behavorial Analysis (ABA) specialist at Rawalpindi’s Green Valley autism school, said. ABA is widely used treatment for autism.

Omer said government universities should introduce autism-related basic courses in psychology curricula and establish on-campus medical centres to provide free-of-cost services and guidance to children and adults with autism.

There are not a lot of voices for autism in the Pakistani public sphere, but Fazli Azeem, a 31-year-old graphics designer from Karachi who has Asperger’s Syndrome, has been advocating for Autism awareness since he was diagnosed in 2006.

“Every child with autism has the potential for growth,” Azeem, who is currently studying in the US City of Boston, told The Express Tribune in a telephone interview. “Parents should never give up 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.

Still, parents of children with autism are extremely vulnerable in Pakistan. Sadia believes a “triangle of support” that involves doctors with autism awareness, committed parents and strong autism resource institutions can help reduce the vulnerability.

But above all, social attitudes to ASD must change.

“These kids are extraordinary, please do not label them as “mad”,” Sadia said. “Autism is not the same as “madness.””

Her three-year-old son is now able to eat himself because of therapy.

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

Resources for Pakistan

Autism is one of five developmental disorders that fall on what is known as the Autism Spectrum, although some experts limit the number to three. Autism Spectrum Disorders (ASD) include autism, Asperger’s Syndrome — a high functioning form of autism — and Pervasive Developmental Disorder-Not Otherwise Specified.

Autism is a unique disorder and each case is different. Therefore, people with autism require more intensive and one-on-one care, according to Fazli Azeem.

Resources for information on Autism

  • The Pakistan Autism Meetup Group – This online community brings together professionals and parents of children with Autism Spectrum Disorders (ASD) so they could share information and experiences. The group has also organised 52 meetings across Pakistan. http://www.meetup.com/autism-77/
  • AutsimPakistan.org – A website created and run by Autism awareness advocate Fazli Azeem. The website provides links to autism awareness events, resource centers and general information about the disorder. http://www.autismpakistan.org/
  • Step to Learn – An Autism Resource Centre based in Islamabad and Rawalpindi. http://www.stlpak.com/autism-resource-center.html

 

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