In an early part of my career, I worked in the Ministry of Education in Namibia. During my time there, the Government was drafting a new education strategy, a process that attracted many an external consultant. One such consultant dutifully shared their estimates of what the new strategy would cost. Only the report they gave me still had the name of the last country they had worked on “Eritrea “. They had forgotten to change the name. Many decades later I took my son to an assessment day for admission to a secondary school which prided itself on being inclusive. At the end of the day they gave me a report on his speech and language needs. The report – detailed strategies to help with imaginative writing and recognising emotions- didn’t sound like my child. I was right. It wasn’t. It was for a child called “Sam”. The school had not bothered to change the name or adapting their recommendations to what was true for my son.
Learning from others is an important part of an individual’s development. The same can be said about any profession or field; building the evidence base on what works and what doesn’t layers knowledge and grounds expertise. For this to happen you have to make sure that what you know to be true is based on robust evidence; one that is not biased, or based on spurious correlation but on replicable reliable methods. There are many examples of autism therapies that are not supported by evidence.
But even therapies, tools and techniques for autism that are supported by evidence need to be selected and used according to your child’s needs and context.
In Pakistan, there is now much more evidence of autism awareness than there was even five years ago and with that an increase in private early years provision. This has been accompanied by a wholescale importing of “autism speak” from outside Pakistan, an acronym soup of “IEPs” and “EHCPs” being copy pasted into our language without any adaptation or alteration. The increased awareness is welcome as is the instinct to learn about what works from others; but we need to avoid rigid “cut and paste” implementation.
There are a few reasons for this:
- First, autism research is ongoing, and we are continuously evolving our understanding of what it is and the effectiveness of approaches that help autistic individuals live in a world that is not designed for them. We need to be aware of the debates and discussions around any intervention and not close off ideas on how it can be improved. Applied Behaviour Therapists will be the first to tell you that how ABA is used now is very different to approaches from when it was introduced.
- Second, we need to understand the rationale and idea behind a particular interpretation and make sure it lines up with the context in which it is being introduced. “When designing support plans for neurodivergent children, cultural context is crucial. Strategies that work in one society may not be effective in another. Families need approaches that align with their values, daily routines, and available community resources,” says Urooj Hassan, a mother, special needs consultant, and owner of Different Not Less. “For example,” Urooj says, “Extended family plays a significant role in caregiving in Pakistan. Therefore, support plans should include grandparents and relatives in therapy and intervention strategies. Additionally, schools need to integrate inclusive education to respect local classroom dynamics, such as incorporating Urdu and religious studies into AAC-based learning for non-speaking children.”
- Third and perhaps most important of all the selection and interpretation of the therapy needs to be adapted to the needs of the person it is being delivered to; their interests and strengths. On this Urooj says, “Therapy should never be a one-size-fits-all approach. It needs to be tailored to the child’s unique strengths, interests, lifestyle, and most importantly, be neurodiversity-affirming. When we align interventions with what truly engages the child, respects their way of experiencing the world, and fits into their daily routines, we see more meaningful progress. For example, if a child is fascinated by trucks and buses, therapy can incorporate activities around the vibrant Pakistani truck art culture to build communication and engagement, rather than discouraging their special interests. Similarly, if a child enjoys music, traditional naats or qawwalis them these can be used to enhance language development while respecting cultural preferences.”
Lets continue to continue to grow awareness in our communities by sharing the latest evidence based knowledge and research; grow our resilience by learning from each other’s experiences and with that also trust the understanding we have of our contexts and families to make the best choices for our children and families.
Zainab Kizilbash is a parent, writer, economist, policymaker, and founder of Our Small Wonders
