"When H* was five years old, she started incessantly rocking back and forth and clapping her hands together. I thought it was something she had learnt from a friend which she would grow out of. Soon, her classmates started deserting her and even their parents would ask them to not play with H* after observing her behavior.

“H* started throwing temper tantrums at home in reaction to that. We had to transfer her to an inclusive school, so that she gets a chance to play with other children her age,” shares a mother of a girl who has now been formally diagnosed with autism.

To raise awareness about autism, every year June 18 is observed as Autism Pride Day, with the aim of celebrating the unique strengths and potential of those on the autism spectrum and fostering acceptance and awareness about Autism Spectrum Disorder (ASD) amongst those who do not have it.

Autism Spectrum Disorder (ASD) is a complex developmental condition, involving persistent communication, social and behavioural challenges, restricted interests and ‘stimming’ — a form of self-stimulation with repetitive behaviours such as rocking, hand-flapping and repeating words or phrases. Generally, ASD is diagnosed after the age of two and is more common in boys than girls.

June 18 is Autism Pride Day. An estimated 350,000 children in Pakistan have Autism Spectrum Disorder, which requires complex therapeutic interventions. While some initiatives have been put forward to foster acceptance and awareness, there is still a long way to go…

According to the estimates of the Pakistan Autism Society, about 350,000 children have ASD in Pakistan. However there is no official reliable data available on the prevalence of ASD because of the lack of reporting due to the social stigma attached to the condition.

Some of the autism centres in Pakistan are Centre for Autism Rehabilitation and Training, Sindh (C-ARTS), Pakistan Centre for Autism (PCA) and Autism Spectrum Disorder Welfare Trust (ASDWT). Autism is a lifelong disorder, so treatment for ASD can vary depending on the age, severity and level of functioning of the individual.

Common target goals for treatment include improving current abilities, enhancing skills (e.g. improved language, advancing play skills and better socialisation with others), as well as reducing challenging behaviours (eg repetitive behaviour, tantrums etc).

TREATMENT OPTIONS FOR ASD

Usually, autism is managed by integrating a combination of therapies to design a holistic treatment plan for the child. One of the most effective treatment options for ASD is Applied Behavioural Analysis (ABA). Other therapies, which are usually used in conjunction with ABA, are speech therapy, occupational therapy, psychotherapy and physical therapy.

Treatment plans are usually customised, involve multiple professionals and are catered toward the individual, since every person with ASD has their unique strengths and challenges. Autism can be diagnosed by various professionals (paediatricians, psychiatrists, or psychologists), ideally with input from multiple disciplines. There is a dire need for affordable and quality treatment options for children with ASD, since the earlier a child receives intervention, the better their chances of developing new skills and managing symptoms.

“Today, there are a total of less than ten child psychiatrists in the country,” says Dr Aisha Sanober Chachar, consultant child and adolescent psychiatrist and co-founder at Synapse Pakistan Neuroscience Institute. “While that number is insufficient for the 2.5 million children who need mental health support, we are miles ahead of where we were 10 years ago.”

Muzaffar Bukhari is the founder and principal of Veritas Learning Circle (VLC), one of the few mainstream inclusive schools in Karachi. While discussing the challenges he faced in interacting with families with children who have ASD, the most significant one was the lack of early interventions, since parents were usually in denial about their child having delayed milestones such as regressed speech development or lack of maintaining eye contact.

There is also a lack of inclusion in mainstream schools, so these children do not have many options to go to regular classrooms and interact with neurotypical kids. According to Bukhari, the stigma against autism prevails due to this lack of integration. Neurodiversity is still considered a mental disorder, so children with ASD are socially excluded, such as not being invited for birthday parties and sent to work with resource teachers rather than learning along with neurotypical children.

PARENTING A CHILD WITH ASD

Being a parent of a child with ASD is a lifelong commitment and learning curve. Research has revealed that mothers of children with ASD reported elevated psychological distress and caregiving burdens.

Urooj Hasan became an advocate for diversity and inclusion after her son was diagnosed with autism in 2011. Over the years, she has gained extensive experience working in various inclusive educational set-ups besides facilitating a parent support group at Aga Khan University Hospital (AKUH). According to her, Karachi now has many centres which provide early intervention, but there is still work to be done in small towns and cities.

“We need to create support groups for parents to ease their burden,” Hasan says. Having taken this task on herself, Hasan has been running an international parent support group called ‘The Special Mom.’ This group focuses on promoting diversity and inclusion for autistic teenagers and adults.

Since treatment for autism requires patience and perseverance, it is imperative that parents are counselled on how long to adhere to one treatment rather than indulging in therapy shopping.

“Therapies only yield results when they are consistent,” says Nehal Faisal, founder of Diffables, a one-stop platform to help connect with the right therapist (speech therapist, behaviour therapist, remedial or occupational therapist). “The constant switching of therapists and lack of consistency impact the efficacy of therapies.”

There is also an urgent need to make these therapies pocket friendly, so that parents are not compelled to quit midway due to financial constraints.

Azeef Malik is a former administrator at an inclusive academic institute in Karachi, Cornerstones School. He shared that, at Cornerstones, their focus is on social integration of neurodiverse children — such as encouraging them to participate in extracurricular activities — since these children usually lag behind in social communication.

In his experience of interacting with parents of ASD children, there is a general lack of awareness from the parents’ side about the condition. However, he has observed that mothers usually are more motivated to gain a better understanding of the challenges faced by their child and they step up to gain the skills required to work with their children. There is often a lack of involvement from fathers in their children’s day to day skill-building, which needs to be addressed.

**Name withheld to protect privacy*

The writer is an associate clinical psychologist and freelance journalist writing for international publications

Published in Dawn, EOS, June 11th, 2023