why does this man still have a job?

I don’t sleep very much . . . or very well.  I haven’t for the past 10 years and neither has my husband.  The problem isn’t our sleep mattress number or too much caffeine. It’s the small matter of our son’s Houdini-like ability to escape almost any confine if he chooses to, throwing caution to the wind and lacking any sense of danger or inhibition.

Over the years, he’s made 4 such escapes and I remember each one as clearly as the day it happened.  He found ways that we never dreamed he knew of to unlock doors, raise garage doors, sneak out un-used doors and squeeze through windows.  Whether he walked into the neighbor’s front door wearing one of my red coatdresses, or ran naked down the street to a neighbor’s house in Cocoa Beach, or entered the front door of another neighbor (a foreign ambassador of some sort) scaring the daughter of the house so badly she cried, I remember them all.  And I remember the panic and despair (even though it lasted only a few minutes each time) of not knowing where he was or if he was okay. If you’ve ever lost sight of your child in a crowd or at the mall, even for a few minutes, you can probably relate to that feeling.

Now he’s 11 and things are a little better.  Some of the impulses are beginning to subside. And low-tech measures have given us some sense of security – deadbolts on all the doors, windows securely fastened with nails and a rigorous (and somewhat obsessive) accounting for his whereabouts in the house at all times.  We no longer take for granted that he won’t try to climb out the ground-level windows and jump on the trampoline at 2:30 in the morning.  Over the years we’ve learned that because of his autism, our son doesn’t fully grasp the concept of danger.  He sometimes has impulses that he can’t control and acts on them without thinking it through.  Years of speech and occupational therapy have helped give him words to communicate, to ask permission, to understand when he’s told, “that’s NOT a choice.”  But there is still that fear, in the pit of my stomach, that he’ll one day disappear, get injured, get lost or worse.

Robert isn’t alone in his lack of awareness and impulse control.  Most families with young children and all families I know with autistic children have stories of escape, subsequent hand wringing and relief (mixed with frustration) at discovery.  You may wonder how we dealt with these issues.  After hugs, and tears of thankfulness and a pause to catch our breaths, my husband and I would admonish Robert sternly.  His responses varied – from looking at us blankly (when he was younger) to muttering, “I’m sorry” to crying.  I’m grateful he’s beginning to understand but I still believe that, given the chance, he’d take off toward something that interests him fearlessly and without looking back.

People who have no children will never understand what it’s like to have a child with autism.  But many of them tend to enter the teaching field with the best intentions of helping kids with special needs.  People who do have kids may relate to our life in some ways, but certainly not the entire picture – unless they’re Jon & Kate Plus 8, in which case they may have an idea of the chaos, uncertainty, fear and utter joy that comes from sacrificing everything you are and everything you have for your kids. A parent once said, “to have a child with autism is to have 10 children.” I have only 3, but my experience suggests to me that’s about right.

I suppose I’m pretty much a drag as a friend.  Being a mom sometimes means losing yourself to a degree and being a mom of a child (or children) with autism is almost completely self-consuming.  Between educating yourself, raising and advocating for the child with autism (as well as your other children) and trying to keep some semblance of order in the household, there’s very little time left to worry about appearance, social engagements, friends or fun.  Thanks to a couple of very persistent friends, I actually have a life (albeit small) outside of my role as mom, wife, advocate and general hard-ass.  And the hard-ass part?  That’s not by choice.  I often tell my husband I’m a “type B girl in a type A world.”  Conflict makes me want to vomit.  But over the years I’ve found myself engaged in pitched battles with insurance companies, doctors and school district bureaucrats on behalf of my kids and especially on behalf of Robert and John, my “wonder twins”, who are both on the autistic spectrum.

Most people don’t get this picture and there’s a reason I’m bringing it all up now.  Michael Savage.  After a particularly exhausting day (summer-time occupying 3 busy boys) I logged into my computer and a good friend pointed to a headline in the New York Times. . .”Savage Stands by Autism Remarks.”  I’ve heard of Savage in passing and mostly associated with outrageous statements that swung to the far right of the political spectrum.  As a liberal, I don’t listen to him and certainly don’t give much weight to his words – at least I didn’t until now.  I read the rest of the article in disbelief.  Then I read articles about the reaction to his statements.  And I read blogs and responses from other parents.  But nothing quite said what I feel needs to be said about his comments.  Why does this man still have a job?  From the New York Times on July 22, 2008:

“On the July 16 installment of his program, which is broadcast every weekday, Mr. Savage suggested that “99 percent of the cases” of autism were a result of lax parenting. He told his audience: “They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life.’ ” Among the other admonitions he felt children with autism should be hearing, he said, were: “‘Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’”

It’s hard to know where to start when dissecting his comments.  The rage I feel is palpable.   Did he intentionally choose a population that is exhausted from the daily battles we wage just to create some type of “normal life” for our families?  Or to get a quality education for our kids?  What if he had said, “Kids with cancer are jerks.” Or “Kids with Down Syndrome are assholes.”  That would have been no different and just as wrong as what he said about kids with autism.  And his network’s defense of his “84 seconds of autism talk” is offensive, ridiculous and futile.

In the 1950s, Bruno Bettelheim, an Austrian-born American psychiatrist, suggested that “refrigerator mothers” caused autism.  And that means exactly what it sounds like – cold mothers who did not bond with their infants.  Apparently, Bruno didn’t factor fathers into the equation.  His theories, though flawed, held sway during the 1960s and early 1970s.  My own mother-in-law, herself the parent of a daughter diagnosed with autism in the early-1970s, was often dismissed and blamed for her daughter’s disability.  She fought for Jenny, who is now 35, at a time when autism was diagnosed in 1 of 10,000 kids.

Thankfully, 20+ years of research thoroughly rebuked Bettelheim’s theories and the focus shifted to autism as a neurological disability with possible environmental, biological and genetic factors.  It is not purely a psychiatric disorder.  Scientists STILL don’t know the etiology or cause(s) of autism.  It’s actually hard to believe Bettelheim’s theories survived as long as they did.  I’ve known parents of kids with autism who are thoroughly, 100% completely devoted to their kids and I’ve known neglectful and absent parents of typically developing kids.   The bottom line is that “bad” parenting does NOT cause autism.   It never has, it never will.  And Michael Savage is ignorant for suggesting that it does.

What’s even more offensive than his original comments is his “defense” of those statements, in which he claims he was trying to point out the over-diagnosis of autism and blaming the pharmaceutical industry and parents being “sucked-in” to a diagnosis.

Autism is now diagnosed in approximately 1 in 133 kids (1 in 88 boys).  There is a lot of controversy, both in the medical and scientific communities, as to the reason for the increase in diagnoses.  What is incontrovertible is that many children born now are neurologically “different” at an alarmingly higher rate than in the past.  I don’t know the reason or reasons for that but I have my own opinions.  I defy anyone, scientist or otherwise, to definitively say at this point what does or does not cause autism because the research and the proof simply isn’t there yet.  Some groups, even within the autism community, have formed opinions based on personal experience and studies, but there is so much that we don’t know about the autism spectrum – and as the saying goes, “If you’ve met one autistic child, you’ve met one autistic child.”

So why are Savage’s comments so infuriating?  Why am I moved to give any credence to his words when he clearly knows nothing about that of which he speaks?  Because with autism, perception is everything.  Children with autism, in the main, are not in wheelchairs, and have no defining physical characteristics.  Their typical looks create an expectation of typical behavior among those around them, be they family or teachers or people at the grocery store.  Our instincts tell us that if we see a child who “looks normal” but is screaming or running or behaving in an atypical way, then that child must be a brat who needs better parenting or more discipline.

I digress for a moment to talk about what some would consider an acceptable form of discipline for a child with autism.   I discovered that while in a self-contained autism classroom in first grade, my son, who was neither aggressive nor self-injurious, was placed in a headlock between his teacher’s knees because he “wouldn’t sit still.”  Ask yourself right now what you would do if a teacher did that to your kid.  After taking the case to the superintendent of the county, I succeeded in having Robert removed from the school and transferred to our local school, but the thought that someone would treat him that way is agonizing to this day.  I took little satisfaction when the young teacher in question was given a new assistant who was less inclined to archaic disciplinary tactics and the principal, as well as the entire school community, was made aware of what went on in the school’s “autism wing.”  My heart breaks for the hundreds and maybe thousands of kids with autism currently withering under such cruel and inhumane treatment.  But I have vowed that my son won’t be one of them.

So when Michael Savage talks about kids with autism being ‘brats’, he is feeding into a harmful (and false) stereotype that is held by many in the general public as well as families – particularly grandparents and older generations – of kids with autism.  Because “our family has autism”, I’ve made friends with moms of families with similar circumstances.  A number of them have lamented the lack of understanding amongst their parents and grandparents when it comes to autism.  Many have been told that the child in question just “needs a good spanking” or “gets his way too much.”  Luckily, my family is understanding, accepting and loving.  My husband’s family has been living with autism for over 30 years so they, too, get it.  I don’t know how I would deal with someone telling me that Robert needs more discipline or better parenting – likely with anger, frustration and withdrawal, which happens to so many families living with autism today.

In response to Savage’s comments, one mother wrote on huffingtonpost.com that she wished his comments about ‘bad parenting’ were true and that one simply needed to call “Nanny 911” to solve the mystery of autism.  I found myself having an imaginary conversation with Nanny Deb (my favorite), telling her to make Robert talk to me.  To give him language that he wasn’t born with and didn’t grow to acquire.  To teach him how to play with toys and how to make friends.  None of this comes naturally to him and all the things most parents take for granted must be methodically taught and reinforced for him, including motivation, consequences and danger.  Things like reciprocal conversations and shared attention are goals on an Individual Education Plan and are never to be assumed.

A website called cafepress.com features thousands of t-shirts and merchandise made by the general public and placed for sale on the site. Out of curiosity one day, I typed ‘autism’ into the search box.  I was shocked at the thousands of designs that popped up.  Some were defiant – “Proud Mother of an Autistic Son” and “My Son has autism, what’s your excuse?”  Some promoted awareness and research – “Unlock the Mystery” and “Defeat Autism Now”.  Others promoted acceptance, my favorites being “What, is my autism showing?” and “We are all Autistic.”  But among these were hundreds of designs with phrases to the effect of “Parenting Advice Appreciated ONLY if You have a Child with Autism.”  There were a LOT of these and it made me think that, clearly, many people have experienced being in a public place or among strangers and verbally chastised for the behavior of their autistic child.  Our family doesn’t experience this much because we tend to isolate ourselves – that is, I tend to isolate US, from interactions with the outside world which are fraught with peril and complications.  But I’ve also grown a thick skin and would no doubt win any verbal back-and-forth with my would-be tormenter(s) about my son or his behavior.

I don’t want to imply that life with autism is misery because it most certainly is not and I would not trade my life, my family, or my children, whom I consider to be the most redeeming and valued part of me, for anything in the world.  I am blessed because I experience joy in things that most people take for granted – hugs and genuine expressions of affection, spontaneous language, complete sentences, and real friends.  Robert draws amazingly detailed pictures that speak volumes more than he could with just words.  They’re full of joy and optimism and show me that, even though it may be hard for him to say it, he is happy and content.  I’ve no doubt that no matter what the future holds for my boys, they will be loved, valued and productive members of society.  Their older brother, who carries the weight of two siblings with special needs on his shoulders, is loving, compassionate and accepting of all differences.  He is not intimidated in the least by other kids who are different or “special.”  He is an amazing advocate for his brothers and a true friend to kids who may not otherwise have one.

As for Michael Savage, I will do the only thing I can in a consumer-driven digital century – I will boycott all of his sponsors and hope my friends and family will do the same (with special thanks to Greg’s Take at gregstake.blogspot.com).  As an aside, both Home Depot and Aflac have dropped their sponsorship of Savage’s show, which is ironic because my son loves the duck in the Aflac commercials and my husband loves Yogi Berra in the same.

Digital Media Inc., U.S.A.: http://dmiusa.com/
Nevada State Corporate Network, Inc.: http://www.nscn.com/
Roger Schlesinger, the Mortgage Minute Guy: http://mortgageminuteguy.com/
Townhall.com: http://www.townhall.com/
Effectur: http://www.effectur.com/landing.aspx?id=436&gclid=COv8oen-ypQCFQ4RnQodqE95rA
Geico: http://www.geico.com/
Wachovia: http://www.wachovia.com/
Gold Bond: http://www.goldbond.com/
FreshStart America: http://www.freshstartamerica.com/
Heritage Foundation: http://www.heritage.org/
Debt Consultants of America (snail mail and phone number listings): http://www.dallas.com/debt-consultants-of-america-incorporated-b23046351
DirectBuy: http://www.directbuy.com/ [See "Directbuy.com Responds Re: Michael Savage"]
WebEx: http://www.webex.com/

In a week, I will update you on the responses (if any) I receive from each of these corporate sponsors.  If you know someone with autism, or if you care about someone with autism, please join me in contacting these sponsors and getting Savage off the air.  If “nappy-headed hos” lost Don Imus’ job, then certainly “Autistic Brats” should cost Michael Savage his.

UPDATE: There are apparently several dozen more sponsors whose money support this radio show.  I’ll update the list accordingly.

UPDATE 2: I’m crossing through those companies who’ve dropped their sponsorships or are in the process of doing so. w00t!