Autism: Not something to be feared, but embraced

The Keck School of Medicine at USC and Children’s Hospital Los Angeles released a study and a video last week that claimed there is a correlation between the development of autism and the amount of air pollution a mother is exposed to during pregnancy. as well as pollution exposure during a newborn’s first year of life.

“What we found is that moms who live in areas with higher levels of particulate matter are about twice as likely to have a child with autism if they are exposed to higher levels of pollution, compared to moms exposed to the lowest from traffic,” said Heather Volk, the study’s principal investigator and assistant professor of preventive medicine at the Keck School.

“You can live in a place with generally clean air quality, but if you live by a busy road and you’re exposed to a lot of pollution from traffic, you can be at risk to have a child with autism and if you live in a place where you live far from the road, for example, but an area that has generally lower air quality, you might be at increased risk to have a child with autism as well.”

The problem is that no matter how many studies are done, researchers treat autism like it is a villainous disease and do not focus enough on how people with autism can contribute to the world.

According to Autism Speaks, the leading fundraiser and advocacy organization for people with autism spectrum disorders, autism is found in 1 in 88 children and 1 in 54 boys.

I was diagnosed with Asperger’s Syndrome, sometimes called AS, in the early 1990’s, before it was fully recognized in the Diagnostic and Statistical Manual of Mental Disorders, better known as the DSM-IV, the unofficial psychiatric bible. This past weekend, the American Psychiatric Association voted to remove Asperger’s Syndrome from the DSM-5, the latest version of the manual, and merge Asperger’s with autism.

When I was in junior high, I thought of Autism like the X-Men of comic book fame. In the third X-Men movie, one of the mutants nearly gets “cured” of his ailment, having bird wings growing out of his back, at the insistence of his father. Many people associate autism the same way, a disorder that parents see their children in emotional agony and want to be rid of the “ailment”, so money gets thrown around to find the cause, which would naturally lead to a search for a cure. The problem with that thinking is that with kids who have Asperger’s and milder forms of autism, the emphasis is on the negative, rather than the positive. Society then views the “disorder” as this horrific malady that isn’t understood but feared by the average person.

Autism has a variety of “disorders” on a spectrum, and Asperger’s is on the higher-functioning end. People with AS have intense, obsessive interest areas with fast memory recall.  When I was younger, I memorized the Thomas Guide map for metro areas in Los Angeles and Phoenix, my birth city. Adults would call me asking for directions when I was in elementary and junior high school.  If only Google Maps hadn’t come along. As a result, kids with Asperger’s are sometimes referred to as “little professors.”

But those talents come at a price. For starters, a social functions can be severely impaired including little eye contact, difficulty with conversation, and difficulty interpreting body language.  Also, my motor coordination leaves a lot to be desired.  It took me years to learn how to tie my shoelaces.  All five of my senses have heightened sensitivity, which leads to all sorts of problems.  My skin is super sensitive to temperature and touch while my food palate is limited because I can feel the texture of the food along with the flavor and the smell more than others.

It was rough from elementary school all the way up to high school, with teasing and bullying by kids who didn’t understand and parents didn’t know what autism was. There were times where I was cornered and spat on.  In my sophomore year of high school, I was pantsed during volleyball practice by someone on my own team.

Through all that, I had, by the grace of God, proactive parents who used services available from the state and other agencies. I went through years of speech therapy to improve the lisp and how to have conversation. Occupational therapy was administered to improve hand-eye coordination and balance.

For years, people have come up with a variety of potential causes for autism, most famously when a study concluded vaccines can cause autism because of the mercurial preservative thimerosal. The study, written by former British surgeon Dr. Andrew Wakefield, has been flatly disproved by multiple groups, including the Centers for Disease Control.

But thanks in part to celebrities like Jenny McCarthy who publicly blamed vaccines for her son’s autistic condition, many parents have withheld their children from getting vaccinated. This trend has led to diseases like measles and rubella to come back into America, where the infections had largely been eradicated.

Many parents have claimed that gluten-free diets have helped their kids. Seeing the clamor online, my parents had me tested for gluten allergy, the supposed sign that helps trigger autistic-like conditions. As it turned out, I didn’t have the allergy. Only pollen and a mild cat allergy. A study in 2010 by the University of Rochester debunked the link between gluten and autism.

Much of the focus on autism has been in children, but there is a whole generation of college and high-school aged people that are on the cusp of trying to live independently with autism. So here’s a novel idea. Rather than put all of our resources on what causes the “disorder,” spend the bulk on helping those that have autism and help integrate them into the world.

When I was diagnosed, my parents were given dire predictions that I wouldn’t live a normal life. They were told I’d never drive a car or graduate college, much less high school. Thanks to their proactive nature and insistence on having me learn in non-“special education” classes, I’m on the verge of graduating with my bachelor’s degree. Am I scared of how to live in the real world, outside of a parental unit or school structure? Yes. Do I fear not being able to adjust to the expectations of society on my own? Sure. Do I worry about the next phases of life like marriage, if I’m lucky, or having children, especially at the possibility of having an autistic child?  Absolutely.  But I will face those challenges with open arms.

The Psalms say, “For you formed my inward parts; you knitted me together in my mother’s womb.” Such is my perspective for high-functioning autism. It shouldn’t be about the pains of autism, but about making life as rewarding and fulfilling as it can be.

Andrew Clark is a graduating senior who is thankful for all those that have helped keep his life’s compass pointed true north.

  • ZoeyMO

    When you see something that “treats autism like it’s a villainous disease” try to understand that YOUR experience of autism is not THE experience of autism.  Yours is the mildest form possible.  By definition, your neurological wiring is far closer to “typical” than that of a child at the other end of the spectrum.  In addition, a high percentage of those children at the other end of the spectrum experience crippling comorbid physical conditions that make them very sick.  For many, many people autism IS a “villainous disease.”  Yes, we should understand that people with autism have gifts to share with the world — and I would argue that MOST people DO understand that — but do not underestimate the damage that ASDs can cause to children, families, and finances.  If we were to ignore the cause of this epidemic and spend the “bulk” of our energies and finances on helping emerging adults, then we would be broke in no time.  We NEED to spend a great deal of time and energy to REVERSE the trend toward chronic illness in children, or soon there will be so many children who are so sick that it doesn’t matter how many high-functioning people with autism are on the verge of becoming independent adults.  There will be no money whatsoever to help them.

  • Shawn_Siegel

    To the degree that people with Asperger’s can successfully function in the world, they deserve the utmost respect. Likewise, to the degree that they avail themselves of treatments that might alleviate some of the symptoms associated with the diagnosis, they deserve the utmost respect.

    There are many colors and tints to the diagnosis of autism, and the comments of the good people in this thread, about their own experiences, make it clear that to state generally that autism is to be embraced is preposterous. There are videos available of the torturous symptoms of autism suffered by many, that make it clear that autism is not to be embraced.

    As for the CDC, it has made it abundantly clear in its refusal to implement a comparative study of the medical histories of the vaccinated vs. the completely unvaccinated that it has great disdain for its responsibility. It was the CDC, after all, that in 1999 produced the first study showing a direct link between thimerosal and learning and speech disorders – and autism. That was almost a decade and a half ago, and the disdain continues, all too clearly displayed in the web of obfuscation and avoidance that tainted the responses of the CDC representatives at the recent Congressional hearings.

    The CDC is supposed to work for the American people, but its allegiance obviously lies elsewhere.

  • I congratulate you on your academic successes as well! 
    I also wholeheartedly agree with the comments that precede mine.  You and
    your family’s experience with autism is by no means my son’s & my family’s
    experience with autism.   As the saying goes, “If you know one child
    with autism, you know ONE child with autism!”

    I also want to add that there is NO scientific study out
    there of which the methodology cannot be questioned and therefore
    debunked.  NONE, including, and especially the ones that you claim are
    doing the “debunking!”  The ones performed by a government
    agency are the ones most likely to be swayed by special interest.

    I agree with you, and this is the ONLY point on which I do
    so, that the population aging out of the educational system needs help, they
    do, and need it BIG time!  But to say that money is being wasted to find
    the cause it shortsighted, there are only so many ASD adults that the
    neurotypical public can afford to help and as the epidemic increases, the need
    will soon outweigh the available resources.  It is of UTMOST IMPORTANCE
    that this epidemic is stopped in its tracks so we can afford to deal with the
    population that is already affected.  And I think most current parents of
    minor aged ASD kids agree, genetics is NOT the area to waste our money studying. 
    Most agree, very few of these kids were just “born with it!”

    More money also needs to be put into researching effective
    biomedical treatments and this is NOT being funded.  Many of these
    children are very sick and in extreme physical pain!  Testing and
    treatment for these many ailments also needs to be mandated to be covered by
    insurance because it often is not.

    Just one last point I want to make.  The fear of sending a child who is incapable
    of communication, off in the care of someone else should and DOES instill a, “hair
    standing on end”, fear in parents like no other situation.  THIS is common
    in children with ASD and THIS type of child is TOTALLY defenseless!  And,
    to say we should embrace this just proves your ignorance on the subject, but
    maybe if someday you do happen to have an ASD child, because the cause has not
    yet been found, then you WILL understand.

  • You need to watch the congressional hearings held on autism last week.  The CDC has done absolutely no studies to debunk the link between vaccines and autism – and Dr. Boyle from the CDC admitted that during the hearings.  My son had 4 combination vaccines right after his first birthday.  Almost immediately, he experienced brain swelling, which lead to head banging, loss of progression in motor skills, hypotonia (low muscle tone), loss of progress in speech, and a host of immune system dysfunction-related issues.  Do some research on the different types of allergy testing.  There are several, and they don’t always show a positive result for a sensitivity.  Doctors use more than one method to detect gluten allergies/sensitivities, including scopes and biopsies.  It’s not always clear cut.  Additionally, while he does not test positive for a gluten allergy with short-term allergy testing, he DOES test positive for a gluten allergy with long-term allergy testing (a reaction within 3 hours, not 3 minutes like typical allergy skin tests). 

  • Jessica Fithen

    I have a son with autism who is 8 years old. I have a dear friend who has a 13 year old with autism who cannot speak, is not toilet trained, has seizures monthly, self-injures daily, and will never, ever live an independant life. Your experience with “autism” is not the same as our experiences. Many of us have truly sick children and I would not wish this experience on my worst enemy. Your level of high-functioning Aspergers is not in any way, shape or form, the same as my child’s autism or my friend’s childs autism. I am anti-vaccine because I vaccinated. Because I saw the harm that vaccines can do. Because measles is nothing compared to a 13 year old who will need lifelong assistance. Who will never get married, go to college, have a family. Who punctured his own ear drum hitting himself in the head so hard. Please, speak for yourself, but not for others affected by this tragic condition.

  • Mr. Clark congratulations on your success.   Most  individuals with autism are denied access to appropriate educations, appropriate services, supports and medical care and are not as fortunate as yourself.  To say you may know what is best for the autism community and all those on the spectrum would be inappropriate as well because you are actually able to write this article, most individuals living with autism may not be able to do so and are often not .
    Additionally you seem willing to debunk anything you may agree with by research studies that are mostly done by those who would financially benefit from the outcomes.  The things you mention in this article are to meet a need, your need, to show you are living well with something that is a part of you and that is wonderful.  However environmental causation for disabilities such as autism and other disorders has been shown and anyone that would not consider the injection of toxins into an infant’s blood stream that then goes on to cause neurological damage would be fool to not consider possible. 
    Watch the Congressional Hearings that occurred on 11-29-2012 and consider the fact that we as a nation have no research to compare vaccinated vs unvaccinated children. That in itself should send a message to every parent in this country.  Additionally most parents who have a vaccine injured child aren’t against vaccine’s per se, they are against toxic contents and the lack of safety and effectiveness studies being conducted.
    We watched our son, a healthy child born 7-1-1991 and developing way ahead of his milestones, regress into what was called autism on a day when he was vaccinated with more thimerosal than an adult could withstand.  We saw the damage before our eyes Mr. Clark.  We don’t need anyone to tell us that is what caused our son’s injury and subsequent diagnosis. 
    Please also don’t feel I’m am being critical of you.  I only ask that you don’t assume what you don’t know and umbrella every reference as something we parents would believe.  We most likely are the most informed, the most well researched, and the most active parents within the disabilty community because we have to be.  Most likely as your parents were to be able to support you to allow you to be who you are today.  But please do not insult us either with what you feel may be true in accordance to those living with autism.  You have one perspective and only one.  Thank you. 

  • Katie Wright

    We are all adults responsible for our own children. Jenny McCarthy isn’t forcing parents to do anything. Please. I asked my pediatrician’s nurse if the multiple vaccines she was giving my baby safe were safe- administered together. She said yes. I was not informed of any side- effects. 12 hr later when my son’s screaming and fever were only worsening I was told this was “normal, nothing to worry about.” Well there was a lot to worry about. Please, let’s grow up. This wasn’t Jenny McCarthy’s fault, she doesn’t make the rules, the CDC and the AAP do. And my son IS allergic is many foods. So I am happy you are so healthy and high functioning but please remember that is your experience. My son cannot speak or care for himself or be left alone. The vast majority of autistic children are not as fortunate this bright young man.Despite the bizarre revising of the DSM I think this essay proves how different aspergers is from autism. 

  • Since there is no reference outside your own experience and by the very diagnosis you claim, you can not speak for my child who succumbed to “autism” because of a brain injury caused by vaccines. This regression out of a “normal” development and into one much more severe than your own experience causes me to want my child to exit the diagnosis and I will do anything within my means to accomplish that goal. In the same way your parents wanted you to have an education, I want my child to be able to develop a friendship, to be healthy and free of seizures that so plagued early on. I want what’s best for him and what’s best for him is to escape the symptoms and behaviors that cause him to be diagnosed as autistic, whatever that is. Best of luck.