Making a difference with autism: Lessons in acceptance

logoHearing that autism cannot be cured is a bomb for families at the moment of diagnosis. On the other hand, learning that we can make a difference is the first step on the path to acceptance. This message is crystallized in the logo of the Kuwait Center for Autism which I visit twice a year doing consultations, evaluations, and second opinions for families. This center was founded in 1994 by Dr. Samira Al Saad, to meet the needs of her own daughter and others in the Arab world.

Mothers and fathers there are asking the same questions I anguished about over 30 years ago when my son was diagnosed with autism.

Questions like:

  • Is there a cure?
  • Will my child ever talk?
  • What level is it?
  • Did vaccines cause this?
  • What about special diets?
  • Can medication help?
  • Can my child have a relationship?
  • Will my child ever be independent?
  • What’s the risk if we have another child?
  • Finally, how can we help our child?

As I listenparents, inevitably I relive parts of my own journey living, learning, and accepting day by day the differences that autism has made for my family. Many people in Kuwait speak English; others come with a family member or friend to translate; all speak from the heart. Like other human experiences, there are no borders. While we have cultural and language differences, we have far more in common than different. As one father of a five-year-old boy told me, “We are still grieving, but we must take action.”

These are questions I ask:

  • What does your child like to do?
  • What’s the best thing about your child?
  • What do you enjoy doing with your child?
  • When are things going pretty smoothly
father-and-son-from-bahrain
This father brought his family from Bahrain for a consultation.

The discussion of these questions points the road to acceptance by helping parents to think beyond the diagnosis. Too much emphasis on trying to change or fix the child spoils the loving which is at the core of the relationship between parent and child. Children growing up with autism need positive, energetic parents enjoying and loving them as they are and simultaneously cheering them on for every little achievement. Scientific evidence points to the trend that individuals with autism, just like typically developing individuals, can learn and progress through their lifetime. Early diagnosis, intensive evidence-based services, and parent involvement are all essential.

Autism Speaks, the world’s largest autism organization has finally come to the point of view that curing autism is not as important as acceptance. As self-advocate and Autism Speaks board member Stephen Shore recently stated in the Huffington Post, “the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum…Autism is here to stay and may be considered a part of the diversity of the human gene pool.”  Of course, breakthroughs in research are  more than welcome, especially since medical complications and comorbidities can severely limit some individuals who deserve and need more supports through their life time.

with-dr-samira
Saying good bye,”ma’al-salamah,” to Dr. Samira at the end of my visit.

It’s been an honor and a privilege to listen to the challenges facing families in Kuwait and to help them find hope through increased understanding of autism alongside love and acceptance. Listening I continually find a deepened understanding of our shared humanity. Remembering that we are hardwired to respond with compassion to each other’s joys and sorrows, the growing connectedness in the world has the potential to tear down barriers and unite us.

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4 comments

  1. Did I read this correctly? Autism Speaks a very well funded and well respected autism group that has until more recently directed their funds for researching a “cure” for Autism now embraces Autism and people with Autism in itself as a human condition like “Autism lives matter” and they are now promoting fulfilling and productive lives for our loved ones living on the spectrum? I am so grateful for powerful people who are willing to change and do what is good for children (adult) like mine and I am most grateful for advocates Dr. Robert Naseef who has quietly worked in the trenches with families like mine in the Philadelphia area until more recently when other countries in other parts of the world with families like mine started tugging on his heart and needing his help. I honor Dr. Naseef and Dr. Shore for their patience and love for all of us who have been affected and afflicted. Finally I would welcome a “cure” but to focus on these last 20 plus years waiting for a cure would have left me bitter and angry. Instead I am so grateful for my son and grateful for the help I get when challenging situations present themselves.

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  2. Great post-Robert. As a professional, I have to walk alongside families on this journey, without your insight as both a professional and parent. These families are so fortunate to have you providing professional support with an incredibly personal perspective.

    Liked by 1 person

  3. As a social worker with children/families experiencing chronic/complex disabilities who also wears the parent role of a 28 year old profound autism, I surely resonate with your reliving the journey, continual learning and accepting. I have always advocated that our focus should be on applied research. I remember a self-advocate with Asperger’s stating in a presentation,”Do you know what it does to your psyche to constantly be told your natural way of thinking or doing is always wrong?” I cannot emphasize also the importance of controlling/modifying environments for those on the autism spectrum. Bob, you are a hero to both me and my Caleb.

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