[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Sunday, October 18, 1998
Column: Working for a Cause
CONTRA COSTA TIMES
MOTHER TRIES TO RAISE AWARENESS OF AUTISM
Danville Woman, Whose Son is Afflicted with the Disorder, Works for Treatments, Early Detection, Prevention, and a Cure
When Elizabeth Emken’s first child, Alex, was born six years ago, she held him in her arms, looked into his face and thought, “How lucky I am to have this perfect little boy.”
Like almost every mother, Emken had concerns of having a healthy baby and, as far as she knew, she had one, until Alex grew incommunicative and disengaged with the rest of the world.
By 18 months, the Emkens knew something was not right with Alex because he wouldn’t talk. By age 2, they knew something was definitely wrong when he would not interact with other children. But it wasn’t until age 4 that doctors diagnosed Alex with autism.
Autism is a neurological disorder that robs children of communication skills, cognition and social development affecting their ability to relate to the world around them, said Emken, who has become an expert on the disease since her son’s diagnosis.
“That’s the insidious thing about autism. You don’t know what it is and what to do until it’s almost too late,” said Emken, becoming teary-eyed. “We lost two years trying to get his diagnosis. That’s what’s really hard for me. I don’t want another parent to feel that.”
The Danville resident firmly believes autism is treatable.
“There’s a great deal you can do, but the younger you start, the better chances of recovery,” she said. That hope motivates Emken to fight for more funding and research for autism.
She is a member of Cure Autism Now, a foundation involving parents, clinicians and scientists dedicated to finding effective biological treatments, early detection, prevention and a cure for autism. She heads the organization’s fund raising for the Bay Area chapter and its national political action committee.
Emken left a high-paying management position with IBM to devote almost all her time to her son and her cause. Her husband focuses on keeping the family afloat financially despite the high costs of treatments for their son. Alex, now 6, attends kindergarten with an adult who helps guide him through the day.
At present, Emken is busy helping to pass legislation that would develop a public awareness campaign on autism and allot more funds for treatment and research. The bill, called the Advancement in Pediatric Autism Research Act, has gained support by more than two dozen congressional representatives, including Democratic Sens. Barbara Boxer and Dianne Feinstein and Rep. Ellen Tauscher, D-Tassajara Valley.
Once thought rare, autism is now known to be the third most common developmental disability, more prevalent than multiple sclerosis, Down syndrome, cystic fibrosis and childhood cancer. It affects one in 500 children born every year and strikes between 1 and 2 years of age. Autism affects about 400,000 individuals in the United States and costs more than $13 billion annually to treat, according to Care Autism Now.
“All these families are going through this, and it seems every time they have to reinvent the wheel and fight along the way. It’s exhausting,” she said. “There’s no need for that if people were better informed.”
Emken explains that parents can determine whether their child has symptoms of autism by observing early stages of development. For example, simple signs to look for are if a child does not point with an index finger to show interest or ask for something, does not engage in pretend play or with other children or does not make eye contact. She eventually wants to pass legislation that would require all pediatricians to make these observations during regular checkups.
“It’s so simple and that’s what’s so frustrating,” Emken said. “This information is not out there because autism is such a scary, bad thing that people don’t want to address it. I keep focusing on it because I don’t feel like I have a choice.
“I feel like I’ve been drafted in this. My son was born to us because clearly this is what I’m supposed to be doing at exactly this time, and I keep working on this because I know we are going to be successful.”
Note: To Read More About The Cure Autism Now Political Action Campaign that Elizabeth is working on, please visit our action pages.
More With Elizabeth Emken
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.