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When I embarked on this journey on the 19th of December’ 19, to my first TEDx talk In Lahore, little did I know that it won’t be the highlight of my trip? There was something else in store for me, which would sweep me off my feet and introduce me to myself.

I had been preparing for my talk for over 3 months, I packed up my bags and headed towards Lahore, my whole family was planning to be there to attend the event.

I had a hectic trip, 2 nights in Lahore. followed by a couple of nights in Islamabad which included a clinic day for ASD assessments, in Islamabad. Then a night in Dera Ismail Khan, to attend my cousin’s marriage and back to Islo (as we refer to Islamabad) for a physical health Check-up, a few more ASD assessments and an awareness seminar on ASD. All in a 7 day trip to Pakistan.

I hardly spent any time with the family, so for the last two ASD assessments, I decided to have the assessments in the newly refurbished study of mine, purpose-built for this type of work. 

The two assessments I had arranged at home, was of the same family; two brothers, one over 18 years of age and the other one was about 13. 

Their father was a Retired Army officer, an engineer in Rawalpindi who was doing a PhD in Electronics. Mother was a teacher in Lahore, managing 4 kids, two of them having a diagnosis of autism and two girls who helped the mother extensively.

A unit split by 400 kilometres to fulfil the needs of the family as a whole. Whilst listening to the parents, I came to know that both boys had been assessed and managed in Autism centres with little education for parents. They had self-taught as they had a background in education.

The whole experience was overwhelming, listening to their struggles as parents and the tales of mismanagement of their kids took me on an emotional roller coaster, seeing their journeys, financial constraints whilst still keeping a smile on their faces.

I was already distraught by the stories I heard at the seminar, this 1:1 interaction with the family made me reflect on the practice, ethos and integrity of us professionals, and the difficulties the families have to face and the turmoil the kids have to go through when not knowing the obvious. 

What was happening to me? This trip to Pakistan, this hectic trip is changing perceptions about my priorities, I was lost in my thoughts as I guided the young boy and the mother back to the Reception Room.

I had briefed both the parents about the plan, as I was talking to the father, the younger of the two sisters approached me. She came close to me, there was an emptiness in her eyes, trying to say something and then whispered in my ear an enquiry, a concern, a complaint, ‘Will he ever talk again? ‘Can his autism be cured’? 

I was left speechless, flooded by emotions, I wanted to cry my heart out, to hold her hand and tell her that everything is going to be ok (a statement we always use when giving the person a false reassurance) I replied, and my voices seemed to be coming from a deep well, ‘I don’t know Beta but I can assure you that I will do my best to help him.’

Once the family left, I noticed tears trickling down my cheeks, I sat there for an hour not thinking too much, just repeatedly having the image of that young girl and her enquiry, her concern, her worries, her complaint. 

I started questioning myself, ‘What prompted her to ask me that question?’

‘No one ever asked me this’ The incident left a deep impression, a big crater, I was so touched by her question that every time I repeated the conversation in my head, I became tearful. 

It also made me reflect on how ASD and Intellectual disability affects families especially in the cultural context of Pakistan. 

I have heard really disturbing stories around the care of children with ASD. 

Husbands have left their wives on being made aware that their children have autism. Schools have expelled children on knowing that kids have ASD. Teachers encourage families to take their smart kids to special schools where they are lost forever.

I see families blaming mothers for their children’s ASD. 

Families are excluded from birthday parties, family functions and closed gatherings. 

They are challenged in terms of finances, as ASD Assessments are done privately in Pakistan and are beyond affordable. I have observed poor skillset amongst untrained staff that impacts the management of these kids. 

Lack of Parental Training for ASD leave the parents clueless, it’s difficult to unlearn bad techniques thereafter. 

I realize that there is a big gap for Autism spectrum disorder, there is a lack of skillset, awareness and a direction regarding its Management.

The question is how an individual can make a difference? I am a believer that by helping one person, you are helping a generation; if we work using this premise, less will become more.

The important thing is taking the 1st step, the outcome of that lies with how motivated and driven we are. Sometimes just one moment, one word, one phrase, one gesture can escalate a process just like in my case, just one sentence by a young sensitive caring sister ‘will he ever talk’ changed the landscape of my priorities.