The ‘Why?’ of Autism

This week Rachel’s blog raises the question many parents have struggled with — is there a link between childhood vaccines and autism? Now that the landmark 1998 study that first established a connection has been discredited, what are we left with?   It’s almost like it never happened.

To explore the issue, we’re reprinting part of an article written by Madison Park for that shows us the personal side of this dilemma.

Autism parents haunted by question: Why?

The retraction of a controversial study that suggested a link between autism and a childhood vaccine has been little comfort to Joe Dimino.

Dimino, whose 5-year-old son has a type of autism, said it only made him more disillusioned with the medical establishment. While Dimino does not believe vaccines cause autism, he’s not entirely convinced the shots are harmless.

The now-discredited study published in the Lancet in 1998 raised the possibility of a link between autism and the measles, mumps and rubella vaccine. The study had become a rallying point for many parents questioning the safety of childhood vaccinations.

“We feel like we’re getting yanked around with this information — how can you say something and say sorry 12 years later?” said Dimino, of Belton, Missouri. “That’s the way it feels.”

It left him feeling “more mistrustful of both ‘communities.'”

Even without the vaccine-autism controversy, parents of children with autism live with a constant question that no scientist or doctor has been able to answer: Why?

Why did this happen to my child? What caused it? Will he or she get better?

“What happens with a large number of families is they get a diagnosis and there are no answers,” said Patricia Robinson, who is a therapist for people with ADHD, autism and Asperger’s syndrome.“And what I usually see is parents start really researching for information.”

Dimino’s son Miles had developmental delays that made his parents suspicious. He had trouble picking up objects. At age 1½, he crawled. He could barely spit out words or phrases and had trouble talking.

After learning that Miles is in the autism spectrum, Dimino and his wife browsed libraries, ordered countless books and spent hours online learning about autism.

Maria Collazo of Belleville, New Jersey, spent hours on YouTube, watching everything she could about autism after learning that her daughter, Madison, had the condition.

She started wondering whether her hours at work, usage of the Blackberry and screen time during her pregnancy contributed to her daughter’s condition.

“I questioned all things,” she said. “Did I eat something I shouldn’t have? Did I expose myself to something? You question yourself. You question and you don’t know — and it’s like a state of mind.”

“There’s no evidence to say the child is autistic because the parents did something wrong during their pregnancy or early years,” Robinson said. “It’s common human nature to look for causes and it is hard on parents, because they do blame themselves.”

The constant questioning is understandable, said Dr. Judith Miles, associate director of biomedical programs at the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri.

“The things that keep me awake at 2 a.m. are the things I’m puzzling over and things I don’t have answers to,” Miles said. “I think the reason that people look at vaccines is because of the time correspondence.”

The symptoms of autism become more apparent around the age of 2, which is around the same time toddlers receive their vaccinations. This has fueled theories that the childhood vaccinations cause the disorder, but scientists say the timing is coincidental.

“That temporally makes a lot of sense and that’s why some families hold on to that,” said Miles, a professor of pediatrics and pathology. “I assume it’s a coping mechanism. We all have coping mechanisms.”

Park’s article pinpoints questions and fears that most parents, but particularly moms, have about autism and countless other medical conditions that affect kids, and there are no good answers.

Their little bodies form and grow within us, so where are we in the equation when things go wrong? Where does our flesh end and theirs begin?

How much control do we really have? We’re so careful to protect them from all things harmful, what does it mean when it doesn’t work?  Are we to blame?

Why does living with uncertainty take away hope?  How can there NOT be answers?  If we can put a man on the moon …

You can read the full article on here.

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Ellen and Rachel are two old friends and “expert” mamas—one a pediatrician and one a family therapist—with fifty years of parenting experience between them.

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