Diagnosing autism: many nations, one world

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I pause for a moment and close my eyes — to center myself in this country, where I am today.   I am about to walk through the door and tell the parents what my assessment has shown. I nod to the interpreter waiting behind me and knock firmly before entering the room.  You see, I am the bringer of news, the bringer of new, unwanted knowledge that validates their fears, news that will shatter the image and future that they have envisioned for their child. This news shatters one dream, but I will help them work toward healing and eventually seek new dreams. I am here for them, here today to meet them where they are, to accept whatever part of my assessment they are willing to accept, and then guide them forward. My role is to help this family understand the importance of services and interventions, so that their child can get the help he needs. My job is to give them hope. As I pause and break the discussion, I notice the tears dripping silently down their cheeks. I hand them a box of tissues, my eyes filled with unshed tears. I wonder if they view my tears as weakness.  Perhaps. But for every family whose hopes I shatter, a part of me mourns along with them for those lost dreams.

I am a developmental behavioral pediatrician working in the Middle East and China. Developmental disabilities know no borders.

China is the land of a decades-old one-child policy, where the parents have no siblings. At the clinic in Shenzhen, I am in the midst of giving my feedback. The interpreter sits very close to me.  At my pause, she immediately starts translating. I can see that the parents are having difficulty accepting the diagnosis, a diagnosis they have heard before. They are here because they had hoped that the American doctor might say something different.   I realize this child is the nucleus of their family, which includes both sets of grandparents. Their lives revolve around rearing her, this beautiful youngster.

Children with obvious genetic problems or any disability are abandoned by parents at birth. They end up in orphanages, their future dismal. Autism is more subtle, something that has slipped through, revealed long after these parents have bonded with their child. It is too late to build up those walls that their love now only keeps pulling down and shattering. Their love that is all-encompassing.

Two weeks later, I am sitting behind my desk in Abu Dhabi, reviewing a patient’s chart. Another family, another country. There’s a knock on the door and my Filipino nurse, poking her head in, asks, “Ready, doctor?” I nod, and she opens the door wide to let the parents in. The woman, garbed in a traditional black abaya, and her husband, dressed in a crisp white kundura, walk in.  I get up and bow slightly with my hand on my chest as a greeting.  In the UAE, like in many other countries, boys are favored over girls. As the mother weeps, I think with trepidation, “Will her husband contemplate another marriage in search of a typically developing son?” As I ponder this, the father reaches across, grips his wife’s hand, and says, “We will love him the same, no matter what. Don’t worry.” Turning toward me, he asks, “What do we do for him to make him better?”  My heart fills with gratitude to see families from dissimilar cultures and backgrounds letting love for their child trump prejudice and societal pressure to conform. I love celebrating their child’s progress in speech, the first month in school, victories over anxiety-ridden days, and the obstacles they overcome to get them into school.

The biggest challenge of working in two distinct cultures and training in another is remembering to be flexible and adapt accordingly. I have watched some parents struggle with the fact that these services will be out-of-pocket. And I have to help them prioritize one intervention over the other. One father told me that he will send his family back to India as the services in the Middle East cost more than his monthly rent. They will sacrifice being together as a family, hoping that these therapies help. I feel responsible for separating families, for the spouse that leaves their significant other behind, even as they may find comfort in returning to their homelands and extended family support system. I try to comfort myself with the knowledge that regardless of the socioeconomic hardship back in their home country, this child will have different opportunities, be the loved cousin, and coaxed to come outside to play. There will be doting grandparents to engage him in peekaboo, whilst the mother takes care of household chores.  It will be far from the current solitary existence in a one-room apartment with iPad in hand. I don’t know what quality of services will be accessible, but at least they will be affordable.

Some of these families, like those in the U.S., do not accept their child’s diagnosis.  They listen, usually politely, and leave.  Never to return, lost to follow up. And I’ve had to learn to let them go.

Families in China have a hard time telling me what their goal for this appointment is. They are cautious and feel afraid to voice their concern. As the visit progresses and they realize their opinion matters, they hesitantly express themselves.  In Abu Dhabi, the families can predominantly voice their reason or goal for the consultation. There is blind faith and utmost respect for physicians and their opinion. Families will say, “What should we do, Doctorra? Tell us.”  Shared decision-making and patient-centered care are novel concepts for them, concepts that they are eager to accept and adopt.

There are days that I find challenging, but they can never be as demanding as what these families are going through. Their humanity transcends borders, weaving threads to bind us all together.

Ayesha Cheema-Hasan is a developmental behavioral pediatrician.

Image credit: Shutterstock.com

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