[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Hanks Family a Special Team
Young Daughter’s Autism Presents Challenges
Article from San Jose Mercury News
By Ann Killion, Mercury News Staff Columnist
December 20, 1998 – SOMETIMES WHEN we’re preoccupied with sticking our sports heroes on pedestals,obsessing about their tackling ability and treating them like two-dimensional objects, we should take a moment to remember that they are just people.
People with personal challenges, daily struggles, small family joys. Life is not confined to the playing field. When Merton Hanks comes home from work, the 49ers safety kisses his littlest girl Milan, who just turned 5. No matter how tired he is, he knows she has been working just as hard all day, with speech therapists and behavioral therapists and teachers.
Milan is autistic. Autism is a lifelong neurological disorder that strikes in the early years of life and can cause severe impairment of language and cognition. Some estimates conclude that one out of every 500 children suffers from some degree of autism. The Hankses aren’t the only NFL family touched by autism — other players, including Doug Flutie, have autistic children.
Marva Hanks suspected Milan was developing differently from the time she was 18 months old. But the diagnosis became official only last year. Since then, the Hanks family has been navigating a system that doesn’t adequately address the needs of autistic children. They have learned that money and fame and a 49ers jersey can’t insulate them from the frustrations of trying to help their youngest child.
But they also know they are blessed, because they are more equipped than many people to deal with the challenges. “I feel for the single mothers,” Marva said recently. “For someone who has to work all day and doesn’t have the time or resources to fight the system.” Autistic children, despite their numbers, are almost invisible in our society. While no longer hidden in institutions as they were in the past, there is still a stigma attached to the diagnosis. The Hankses have met highly successful parents of autistic children who are embarrassed by their children’s special needs.
“Sooner or later, you have to make a stand,” Merton said. “You have to overcome your personal concerns and do what’s best for your child.” To that end, the Hankses will host a fund-raiser in Hillsborough next spring to benefit Cure Autism Now, a parent-driven advocacy group. The organization was founded by Jon Shestack, the producer of the film “Air Force One,” and his wife, who discovered — like the Hankses — that the burden of helping autistic children belongs almost exclusively to the parents.
“It’s been a blessing because it’s made me more patient as a mother,” Marva said. “And I’ve also become more vocal. It has made me more of an advocate.” And when your spouse is committed to an NFL schedule for six months of the year, the burden becomes more intense.
“Marva has carried the brunt of it,” Merton said. “She’s taken on more of the frustrations of an inadequate system.”
When Marva was playing basketball at Iowa, where she met Merton, she worked with autistic children one summer. In addition to giving her a keen appreciation of how privileged athletes were to be so in control of their bodies, the experience gave her insight into the disorder. So when Milan was not speaking at 18 months, Marva began to have suspicions that she might be autistic.
With autism, early intervention is crucial. So Marva became her child’s advocate, scheduling appointments with specialists until finally the official diagnosis was made at UC-San Francisco.
Dealing with news
“It was two days before Merton had to go to training camp (in 1997) and we were driving across the Bay Bridge,” Marva remembered. “I was crying, but he didn’t say anything. He went off to camp to deal with it. And I had no time to have a pity party. I had to help my child.”
The diagnosis qualified Milan to work with speech, occupational and behavioral therapists. Marva now hires a private team, frustrated by the restrictions on the therapists in the public system. A deeply religious family, the Hankses wanted to incorporate prayer and a spiritual side into Milan’s therapy.
Milan has gained the capacity for language in the past 18 months. She was in a special preschool for awhile, but was excelling beyond most of her peers. She is now in a “regular”” preschool with non-autistic children. She has a tutor (the Hankses prefer the term “shadow”): Marva’s cousin Jackie Childress, who lives with the Hankses, goes to school every day with Milan. Milan will also attend public kindergarten next year, with Jackie in tow.
“I see her growing being around other kids,” Marva said. “That’s how she learns, by imitating behavior.” Milan’s best role model is her sister Maya, just 13 months older. Maya and Milan have their own way of communicating, but Marva encourages her oldest to help Milan use language properly.
“We’ve overcome many things as a couple,” Merton said. And they don’t view Milan’s situation as a tragedy. They see it as obstacle that must be addressed, accounted for and eventually overcome.
“I want her to function in society,” Marva said. “But I also want to keep her special and unique. We’re not denying it, we’re defying it. This is the way we’ve learned to cope.” They want to help others cope. Marva has had conversations with single mothers who don’t know where to turn. She tells them to demand the resources that are available to them.
And she never sits around wondering, “Why me? Why our child?” “We don’t have time for that,” Marva said. “I hope we’re going through this for someone else.”
More With Cure Autism Now
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.