Building a better future for children with autism
When Faraz was 15 years old, he started acting out. He would hit and bite his family members, grabbing their hands, pulling them into his mouth, piercing his teeth into them and injuring their hands. Sabrina could not figure out why, all of a sudden, her son transformed into an aggressive and violent adolescent. It became painful for his family to be around him; he would tug Sabrina’s hair so hard that she had to chop it all off. She even wore a helmet to protect herself.
No one else could make sense of Faraz’s outrage, but Sabrina knew that he was trying to communicate something to her. She knew him; and he was not an innately violent adolescent. She did everything to communicate with him in sign language, and ruled out all the possible reasons for his hostile behaviour. When the doctor examined him, they realised he was in extreme pain and could not verbalise his discomfort. All this while, he had blisters in his mouth because of a tooth infection. He repeatedly pulled hands into his mouth and bit them to poke the area where his tooth and gums would hurt. When his teeth and gums healed with treatment, he stopped biting and hitting his family members.
Faraz does not have the ability to communicate his emotions. Since he was four years old, when he was diagnosed with Autism Spectrum Disorder (ASD), Sabrina has known that communication with her son would always require a lot of work. “I knew for a long time that if I don’t fight for my son, no one else will.” When he was young and not able to meet his developmental milestones, she found that no psychiatrist or paediatrician could understand the meaning of the word ‘autism’. He was misdiagnosed with a hearing impairment for the first few years. Only when she travelled to the United States, he was correctly diagnosed with ASD.
Faraz is now thirty-five years old, and since then, Pakistan has made great strides in supporting children and adolescents with ASD and other mental disabilities. Ten years ago, diagnosis for ASD was often missed and parents lost opportunities for early intervention, which is imperative for children to reach their full potential. Even when children were diagnosed with ASD, parents would not have access to services like speech and occupational therapy to support their children. There were no schools with inclusive education practices, and children were not accepted for being differently abled. Only privileged parents like Sabrina, who could afford to travel overseas, were able access the best services for their children.
Child Mental Health and ASD in Pakistan
Today, there are a total of four child psychiatrists in the country, with two of them working at the Aga Khan University Hospital (AKUH). While that number is insufficient for the 2.5 million children who need mental health support, we are miles ahead from where we were ten years ago. AKUH, through support from a generous donor, who wishes to remain anonymous, has been able to create a multidisciplinary child psychiatry team. This supporter felt a gap in the country for child mental health, and wanted to create support system for parents, and helped AKUH create its Child Learning and Behaviour Clinic (CLBC).
Autism Parents in Action (APACT), support group for parents, at AKUH
Unlike before, when all the support was atomized and parents struggled to find reliable information, AKUH has all the support services needed for children with ASD under one roof. For the last two years, the clinic has also been running a successful support group for parents, called Autism Parents in Action (APACT). It is a safe space where parents can come together and discuss the challenges they face with their children. Urooj Hasan, a volunteer and parent, took the initiative to run this group. She says, “I began volunteering with AKU because parents need support, and often, people around us are not able to understand our problems and can be judgmental. When you come to a forum and speak to other parents, you feel that I am not alone and others are struggling with the same issues as me.”
Teaching children with ASD
Charlotta Holenstein leading a session on Behaviour Management of Children with Austism at AKUH
AKUH has been focused on improving capacity of other organizations by training teachers and paediatricians to be able to recognise, teach and communicate with children who have ASD. For Autism Awareness Month, on April 6, 2018, AKUH with the help of CLBC’s supporter, hosted a session on Behaviour Management of Children with Autism, and brought in Charlotta Holenstein, a Board Certified Behaviour Analyst ,from Scotland. Holenstein led a talk with parents and teachers on Applied Behaviour Analysis (ABA), a proven technique to communicate and teach with children with autism.
Holenstein said that children with ASD learn differently from mainstream children, hence, we need to find alternative ways of communicating with them. “I think a real challenge for parents is not knowing what their child wants, because when the child is upset, they are unable to communicate it to them.” Since the way ASD manifests in children is diverse, and the communication abilities vary greatly between children, Ms Holenstein stressed the benefits of using ABA to tailor and individualise the teaching. “There is no one method of teaching that will work for all children with ASD.”
Urooj reiterated the importance of ABA trainings to parents from trained professionals, “We need more professionals in Pakistan who are trained in ABA. With more professionals like Charlotta coming in and speaking to us about ABA, it is giving perspective to us, parents and teachers, about what the best practices in the world are right now, and as a parents it gives us hope about what we can achieve with improved teaching practices.”
Dr Ayesha Mian, Chair of Psychiatry at AKUH, said, “The concern has not been that we do not have enough people seeking help, it is actually that there are too many people who need support and not enough of us.” To improve access, Dr Mian stressed that AKUH will continue seeking important partnerships, and will focus on training parents, teachers and medical students. According to Dr Mian, improving capacity is an important mandate of AKUH because it is the only way to reach more children who need support.