Why PBS NewsHour’s ‘Autism Now’ report is must-see TV

By Alive & Well

Well hello there – Marj the ghostwriter here, coming out from under the sheet to share a video with you.

In fact Nichola was the one who spotted it originally, but I found its perspective particularly compelling to me as a close relative of a family dealing with Autism.

Perhaps you, or someone you know, will too.

The segment is the first in a series of six reports by venerable PBS NewsHour anchor, Robert MacNeil, about his 6-year-old grandson, Nick, who has Autism.

MacNeil says that in 50 years of reporting, he has never brought his family into a story – until Nick, because “he moves me deeply.”

There is much in this video that will resonate with anyone whose life has been touched by Autism. Things like:

  • Nick as a healthy, alert, engaged 9-month-old with no apparent medical problems – and then at 6 years old with all of the classic signs of Autism
  • His experience of Autism not just as a brain-development disorder, but also as a physical illness that affects his whole body, particularly his digestive system – “his whole system shut down”
  • The many parents who have felt “slighted” by the medical community, and have had to create services and make “new careers” of caring for their children

Nick’s mother Alison tells of the negligible support she received from his developmental paediatrician, who put all of the issues she raised down to Autism without providing any potential solutions or avenues of enquiry to follow.

So when Alison said, “This child has not had a formed bowel movement since the 15-month shots,” she was told, “Children with Autism have diarrhoea.” And when she mentioned that Nick often cried inconsolably, the response was just, “Yes, we always see that with Autism.”

I know that Nichola had exactly the same experience with many of the medical professionals she saw in the early days, and I know how very unhelpful it was.

The story emphasises the need for medical professionals to stay involved with the child and proactively refer the parents to specialists – like gastroenterologists and neurologists – who can address specific issues.

The toll on siblings

The impact on Nick’s parents is clear. But what about the siblings?

Parents of special needs children will understand the challenge of trying to ensure that siblings get the attention and care they need. But it’s tough. As MacNeil says about Alison and her family, “All of their lives, ultimately, revolve around [Nick’s] needs.”

It’s brought into sharp focus when Nick’s 10-year-old sister talks – with such sweet, poignant honesty – about the profound effect that her brother’s condition has on her life.

We’ll post each of the reports as they come to hand. Please do watch – and let us know your response when you do. Which parts sounded familiar to you?