Act Early Against Autism Blog

Autism Brain in Motion

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See different regions of a child's brain light up during a functional Magnetic Resonance Imaging scan. The brain belongs to a child who lost a diagnosis of an autism spectrum disorder.

Autism Animation

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Jayne Lytel's Interactive Autism Feature of the Week: My son learning animation basic in summer camp and created this short movie.

a lesson on aging to heed: relieve stress

An article in today's Washington Post (Our President Our Selves: If Obama Grows Old Before His Time, Stressed-Out Cell Tips Might Be to Blame, Jan. 19, 2009), points up the importance of taking time for yourself to relieve stress. The article cites a study from the University of California at San Francisco that published results showing that mothers who cared for a chronically ill child appeared to be about 13 years older than mothers raising a healthy child.

The culprit that accelerated the aging process: telomeres, which cover the tips of cells. Each time a cell divides, telomeres shorten until they are too short for the cell to divide, which means the cell dies. Cell death can cause or contribute to some age-related diseases, such as certain cancers. Another factor blamed for shortening telomeres includes smoking.

Telomeres shorten as we age.  Scientists have known that for decades. The study draws an additional link to aging: It shows that chronic stress also shortens telomeres.

The study's conclusions should provide more support for finding stress-busters. You know better than anyone the types of activities that relieve stress for you. Exercise is always good, but often takes such a big effort to get started, especially if you don't have extra help to supervise your child, if he's not in school.

You might enjoy long walks, chatting on the telephone or in an online support group, or cooking, which can be relaxing. The activity is less important than doing something that makes you feel good about yourself and thus relieves stress.

During the height of my son's therapy program, I ran and worked out three times a week, not religiously but enough to feel its benefits. I also ate well. I didn't buy organic, but I avoided TV dinners and fast foods, whether they came from a can or the burger joint. Before my son learned to talk, I kept a speech diary of his emerging words. I read it to lift my spirits because it showed his progress. The Early Intervention Network's section on Seeking Support lists sources of support groups. I'd welcome other suggestions.

autistic-like or autism

As new Dad Erik Linthorst points out in his recently released documentary, Autistic-Like: Graham's Story, the birth of his son started out as a perfect beginning. Around 17 months, something wasn't quite right.

Finding out what's wrong with our children after their developmental trajectory teeters and then plummets is a primal instinct. Being handed a label that we don't like, such as autism, makes it difficult for many to recover from the blow of the diagnosis and move forward to start immediate early intervention.

It was my worst nightmare when my son was handed the autism diagnosis. Like Linthorst, I felt that the diagnosis didn't fit my child's behavior. I sought a second opinion. It changed his diagnosis from autism to PDD-NOS, short for pervasive developmental disorder–not otherwise specified, or atypical autism.

However, I can't say for sure whether it would have changed his course of treatment. I didn't treat the label: I treated the symptoms.

Although I have not seen the documentary, just the trailer, it appears that Mr. Linthorst settled on relationship-based therapies, particularly Floortime, rather than therapies grounded in behavior modification. I'm also a fan of Floortime, as well as applied behavior analysis, particularly applied verbal behavior, both of which are based on the pioneering work of B.F. Skinner.

I think Mr. Linthorst did a commendable job with a well-produced documentary and chose a title, Autistic-Like, that will resonate with many parents who feel less stigma saying their child has a sensory processing disorder (SDI) rather than autism, which is a recognized disorder in the professional manual clinicians use to diagnose mental health disorders. SDI is not.

But I hope the message is to seek treatment early and not to debate the merits of one treatment or label over another. What worked for Graham or my son is as unique as the smiles on their faces.

Autism and recovery: Is it real?

Many people tell me "I'm lucky" my son recovered from autism. So few do.

I understand why others think that. I sometimes think that, given that such a small but growing number of children emerge from the enigma of being socially isolated, never able to find joy and compassion in life.

But you have no idea how autism reordered the dynamics of my life and my family's.  The experience left me broke, and my marriage failed.

When I learned of Leo's diagnosis, I jumped feet first into helping him as if trapped on the balcony of a burning building. I gave up my writing career, my income, my friends, my daily routine, just about everything to redirect my son's course of development. Understanding how to help him, learning what to do and then advocating for his rights was grueling, demanding and rigorous.

I'm deeply saddened that my family — my mother, father and brother — never called to say, "Jayne, how are you doing? What can I do to help?" Family supports are critical during times of crisis. My family never understood the graveity of the disorder like I did.

While I got my son back, it came at great sacrifice. I have no regrets, but I wouldn't want to do it again.  I crusade on behalf of early intervention, because it saves lives. In many ways, helping parents recover from the blow of the diagnosis and start immediate early intervention for their child is a rescue mission. I hope that you will join me in forwarding the link to my story, which appears in the Tuesday, Nov. 18, 2008, edition of The Washington Post, to other families clinging to hope that their child will one day say, "I love you."

Savage and Leary: dumb and dumber

Michael Savage, a conservative radio talk show host, upset the autism community last July when he called children with autism "brats." Now actor Denis Leary has taken a swipe at the parents of children with autism. In his new book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid, Leary blames autism on "inattentive mothers and competitive dads."

I don't have to trash Leary for making such insensitive and inaccurate remarks. He does it himself. In the chapter, "Autism Shmautism," posted in its entirety on United Autism's website, Leary writes, "...it don't get much more white trash than me."

How true. Leary's research into autism amounted to what came off the top of his head. If he had bothered to research autism, he would have learned that the scientific community disproved the hypothesis that unloving moms caused autism in their child more than 50 years ago.

But let's not blame Leary for publishing this misinformation. What about Viking Adult, his publisher? And his editor, if he had one. From the quality of his writing, he needed several.

Moreover, he grossly misstates other facts, writing that a "truly autistic child may be able to reproduce music he or she hears with perfect pitch—entire classical pieces, the rock opera Tommy, the latest hit Broadway musical—over and over again." 

He bases this on his acquaintance of two autistic children. Unfortunately, children with autism who possess exceptional talents are the exception to the rule. Research shows that about half of children diagnosed with the disorder are mentally retarded and 40% or more never develop functional speech.

I confess, I didn't read the whole chapter because I didn't see the point other than to ignite an uproar to generate sales.  As a comedic effort, I didn't find his remarks funny or enlightening.

Leary has since apologized. But he should do more, such as support families in crisis by donating some of the profits of his book to autism nonprofits.

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.

what do you want to read about?

I've begun to craft the content for this autism blog. Please tell me if you think I'm on target or what you would like to read. You can email me at Jayne (at) actearly (dot) org

I've written my email address this way so that it is not picked up by spam crawlers. If you found me, I'm confident you'll be able to figure out how to email me. Thanks. --Jayne