Mickey’s mother, 28, defends her son’s independence, who lives in the community
Caren Zucker is a television news producer who began reporting on autism after her oldest son, Mickey McGuinness, was diagnosed in 1996. Feeling there was not enough information for the families of autistic, Caren asked John Donovan, then ABC News correspondent, to make stories with her to publicize the topic. The two have created several television projects on the subject and, in 2016, published a Pulitzer-nominated book, Another Tune – A History of Autism.
But for Caren, it didn’t seem like enough. “I felt that after we finished the book, we still hadn’t reached people outside the autism community,” she said. So the team created a documentary with the same name as the book, but with a different focus.
While like the book, the film provides insight into autism, it focuses on two people. One is Caren’s son Mickey, now 28, who lives in First Place, a community in Arizona designed to help adults with special needs build independent lives. The other is Donald Triplett, 89, the first patient diagnosed with autism. Read excerpts from the interview with Caren.
What changes have you seen in the years you’ve been writing about autism?
I think over the past 20 years, we’ve begun to understand how to really educate and support children with autism. But as kids grow up to be 21, they fall off a cliff because there are so few opportunities for adults. This is our next challenge. Another thing is that the spectrum has changed. There was until a few years ago autism and there was Asperger’s.
People with Asperger’s have managed to get PhDs, get married, drive. They have managed to be very functional adults. And at the other end of the autism spectrum were people who would need some kind of support. Today we put them all in a cake. I think people with more profound autism are getting lost in this new spectrum. It’s hard to educate people when it comes to such a broad spectrum. And the film shows that this specter exists. We call people who know nothing about autism civilians. And civilians play a huge role in the quality of life a person with autism will have, how they raise them, how they accept them, how they defend them on the bus. The big question is to create community.
How did your younger children relate to Mickey Mouse?
Mickey Mouse is the firstborn, so he has always been in the life of the little ones. I invited my children to attend Sibshops, and it was one of the most memorable experiences because it gave them a safe place to talk about all the good and bad things about having a sibling with autism.
And I think any family that can afford it should.
Can you talk a little bit about your decision to send Mickey to Arizona, away from your home in New Jersey?
I wanted Mickey to have an independent life. And I knew he wanted it too. He must have a community. We won’t be here forever. Yes, he will have siblings. But I want the brothers to love him and be with him because they want to, not because they have to. I want to make sure that everyone has their own life.
Do you have any advice for families starting this journey?
Listen to your children. Nobody knows them better than you. And hold on to the good parts, because there are so many. And, you know, life is challenging for different reasons for many different people. / TRANSLATION BY RENATO PRELORENTZOU
Source: Terra
Ben Stock is a lifestyle journalist and author at Gossipify. He writes about topics such as health, wellness, travel, food and home decor. He provides practical advice and inspiration to improve well-being, keeps readers up to date with latest lifestyle news and trends, known for his engaging writing style, in-depth analysis and unique perspectives.
