Act Early Against Autism Blog

the day when we find a cure

The mantra in the autism community is "the earlier the better" — meaning earlier diagnosis and treatment allows children with autism spectrum disorders to participate in life as fully as possible. I crusade on behalf of that message.

But how early is early? An article in today's Washington Post reveals new prenatal DNA tests can screen for a wider range of genetic abnormalities [registration required]. Autism was not one of the detectable disorders, but developing a genetic test for autism spectrum disorders is on the radar screen of resesarchers. To develop a test, the genes involved with autism must be identified. Researchers know some but not all of them.

In the Post's article, critics raised the debate about pro-life versus pro-choice. As sure as the sun will rise every day on 67 children who will be newly diagnosed with the disorder, this debate will rear up again when the genetic causes of autism are found.

I cannot tell parents to abort their child — or keep it. But I will tell them to understand the immense demands, cost and time associated with raising a child on the autism spectrum and how the disorder will re-order the dynamics of their family, perhaps to the point of destroying it. I will also tell them that early intervention does not guarantee success, but it does offer hope at a time when hope seems lost.

While we will always disagree on the rights of an unborn child, I hope that we can come together behind the message that earlier information about a disorder will allow parents to seek out the knowledge and wisdom of those who have come before them to either let go or improve the quality of life for their child (and themselves) because that's what it's really all about.

on the spectrum, off the reservation

It’s a good thing that scientists at the National Institute of Mental Health recently scrapped testing a fringe autism treatment, called chelation, (key-lay-shun), after reviewing animal studies that suggest chelating agents can cause cognitive damage.

Chelation is a process that is sometimes used to treat lead poisoning and involves injecting chemicals into the bloodstream to cleanse the body of this heavy metal. The Food and Drug Administration approves this use but not to treat autism.

Supporters of chelation therapy believe that this therapy also will remove mercury, another heavy metal, which will then cause the symptoms of autism to lessen, or go away.  These are also the same people who erroneously believe that there is a link between autism and vaccines.

In fact, chelation therapy has caused deaths in children with autism. The potent chemicals that are used in chelation therapy destroy other vital nutrients from the body that can dangerously disrupt its chemistry. YouTube removed a disturbing video uploaded by a mother of her child’s intravenous chelation therapy.

The danger that lies ahead is that parents will act on their mistaken beliefs and pursue this dangerous and unorthodox treatment to purge their children of mercury, rather than undertaking the long struggle necessary to teach their children to talk, interact and find their place in the world.

Autism, like few other neurological childhood afflications, can often be addressed with therapies that redirect a child's course of development. Treatment is laborious, expensive, frustrating and slow.  The results are not guaranteed, but the methods do have scientific validation behind them.

palin and her special (needs) interests

Sarah Palin, Republican Senator John McCain's vice presidential running mate, needs a reality check.

Seriously, forget that Mrs. Palin, the governor of Alaska, is inexperienced in foreign policy, a gun-toting pro-lifer, or an ex-beauty queen. She is the 44-year-old mother of five children, with the youngest — a four-month-old — born with Down syndrome, a serious genetic disorder that will demand time for early intervention if there is any hope that this child will participate in life as fully as possible.

I wish Mrs. Palin the best. But as a mother of a child diagnosed with autism, another serious disorder, I question her ability to deliver as the second in command of this nation and in her most critical role, as a mother.

How will she possibly manage?

I couldn't during the early days of my son's diagnosis. Granted, I didn't have months to prepare for the profound impact of knowing that my child had a disability.  He was two when the results of an evaluation pronounced him autistic. Through a prenatal test, Mrs. Palin knew months in advance, which gave her and her family time to research the disability and interventions and adjust to accepting a child who would not be "normal." But whether the diagnosis comes like a bolt from the blue or from a blood test, the way you learn about your child's disability doesn't abate the immense financial and personal commitment and emotional toll it takes to raise a child, any child, with special needs.

I don't know whether to applaud Mrs. Palin with a "go for it" rally cry or ask, "What were you thinking?"  More precisely, what were you, John McCain, thinking when you placed Mrs. Palin on the short list and then asked a mother of an infant with special needs to lead, at your side, the greatest country in the world. Did you explore the huge demands raising this child will take? Or do you place her in the company of other elected officials, namely Reps. Cathy McMorris Rodgers of Washington state and Pete Sessions of Texas, raising children with Down syndrome, and that it's no big deal?

Well, it is a big deal. Serving in Congress is not the same as serving under the president in the No. 2 spot.  Where will Mrs. Palin be if there is a call to war or a call from the doctor's office saying open heart surgery is necessary — now? Almost half of babies with Down syndrome have heart defects, according to the March of Dimes. While the needs of Trig, her Down Syndrome son, are not fully known, surely he will be a candidate for some type of therapy, such as speech, occupational and/or physical therapy. Down syndrome occurs in about 1 out of every 800 births, the result of an extra chromosome, and is associated with mental retardation, language delay and numerous health problems.

During the routine course of Trig's life, who will be taking him to his therapeutic and medical appointments should the ticket of McCain-Palin win in November's general election? Vice President Palin, a family member, friend or volunteer, of which I'm sure there will be many, or Todd, her husband? My child's treatment required up to 35 hours per week, constant research into current therapies, one-on-one work with him, extra time with his older brother and extraordinary vigilance to monitor his progress. I would find it a Herculean effort to keep in touch with the needs of my special needs child if I were seated in the West Wing rather than in the waiting room of a speech therapist.

On some level, I understand Mrs. Palin's decision to say "yes" to  Senator McCain. How could she turn down a once-in-a-lifetime opportunity — to possibly serve as America's vice president, which will give her the grist to possibly run for president on her own. I, too, would be swept into the mania. But after having raised a child with profound handicaps and abandoning, not expanding, my career for four solid years to do so, I hope that my cooler head would prevail.

My wish is that women like Mrs. Palin can reach for the stars and grab the universe beyond. That no woman has to limit herself in the face of adversity or what others perceive as insurmountable odds. But that doesn't change the reality that Mrs. Palin has accepted two responsibilities, each of which take time and energy far beyond the normal bounds.