In this spotlight Shahira Akram speaks to Zainab Kizilbash about her latest initiative to support autism communities in Pakistan
Shahira, you have been working to support inclusion for autistic children and adults for the last eleven years from your work with Pakistan’s first ever inclusive sports club to now, your latest initiative Start Smart. What motivates you?
I am deeply committed to creating inclusion for children with autism and their families.
Eleven years ago I was facing a lot of personal challenges. I was working in a school at that time. My understanding about autism was the usual one, I thought that children with autism have very basic social and communication skills and do not really know what is going on around them.
I remember one day that I was quite distraught. I didn’t say anything and none of my colleagues could sense my underlying anxiety. There was an 8 year old boy though, nonverbal, autistic. He was the only one who came close to me that day, put my dupatta on my shoulder, and gently moved my face so he and I could have eye contact for two minutes. This was the first time he had done that. He was much more perceptive about my state of mind than any of the non-autistic adults around me. From then on I understood that autistic children have high degrees of empathy and are present and aware of what is going on around them. That knowledge has motivated all my work.
That is beautiful. Tell me more about your latest initiative Start Smart and its focus on Individualised Education Plans?
I have been contemplating the idea of Start Smart for a while. Covid provided the last push. During the pandemic I realised that a lot of parents with children with special needs whether living in rural areas or educated parents living in urban cities did not know about the concept of Individualised Education Plans (IEPs). I wanted to do something about it.
What are Individualised Education Plans?
IEPs are detailed plans, personalised to each child that set out targets and strategies to help your child learn. They recognise that an individualised approach to education is the key to success. My team consists of dedicated professionals are passionate about helping children with special needs reach their full potential all while understanding that each child is unique.
Through regular meetings and ongoing support, the team will work together to develop and implement an IEP that addresses the specific needs of each child. They will provide guidance and resources to support the child’s learning and development, and will collaborate closely with parents and caregivers to ensure that everyone is on the same page.
Are they a known concept in Pakistan?
No. A number of parents contacted me after I launched Start Smart. 90% of them did not know about IEPs. And I found that quite worrying given they are a basic tool and unless the support for the child is rooted in strategic tools like IEPs, they will not be able to progress.
What are their main benefits?
There are a number of benefits of IEPs. In our context they help with a number of things. They can be one way of making sure that all the therapists, schools, family involved with a child are pulling in the same direction. IEPs can be used to set the same targets and strategies for the child, and to make sure that everyone involved is using the same language. They also help make sure that any goals are personalised to the child and make sure they are translated into small achievable steps. Our IEPs are set for three months, we then review and refresh.
IEPs must also help with transferability of skills, we know this can be a challenge for people with autism?
Yes absolutely. It helps the whole team around a child communicate what they are able to achieve in different settings which can then be worked on in other contexts. IEPs open up a channel of communication with the whole team involved in the child.
You have set up a great team working with you. Tell me how you went about it?
I was very keen to have a diverse team. Start Smart has a mix of professionals from speech and language to behaviour therapists. Team members are also based in very different cities of Pakistan as I wanted to make sure that the IEPs can be as personalised to the child and family’s context as possible.
What are some of the challenges you are facing?
The current economic context in Pakistan means the costs are a major challenge. Both for us and the parents.
Transport costs are high and so we try to do some assessments online but parents prefer face to face. We are keen to keep fees minimal with flexibility of discount for parents with affordability issues. Ironically, as we have discussed before Zainab, if we don’t charge anything parents also don’t come as they feel what we bring may have no value to them. Our fee structure tries to balance these issues.
I have had to be clear with my team that this initiative will offer them a lot of personal growth and experience but may not be a route to a great amount of funding. I am so glad I have a team that understands that and is willing to support this initiative.
And how do you deal with disruptions caused by the current political context?
This is a challenge for us. The context disrupts routines and schedules which can be difficult for autistic children who thrive on predictability. But we have learnt to adapt working with parents to counsel children. For example one of my clients has been quite distraught by cancelled classes. Now I send him a video explaining why there is a change to our session. He watches that video whenever he wants to and that sense of control keeps me calm.
What does success mean for you, Shahira?
I am a professional. I want to grow and make a difference. I chose this field because in Pakistan the special needs community is neglected and unsupported, bounced from one place to another. If I can help provide support for even one family, it will all be worth it.
