More On Autism-Savage Firestorm: Is Autism The New Sacred Cow?

July 26, 2008 / 6:12 pm • By Dr. Melissa Clouthier

Katherine Berry of Villainous Kate fame wrote a thoughtful article for Pajamas Media about Autism being the new protected class:

But Savage chose to stand by his comments, explaining in a New York Times interview:

“My main point remains true,” Mr. Savage, whose radio audience ranks in size behind only those of Rush Limbaugh and Sean Hannity, said in the interview. “It is an overdiagnosed medical condition. In my readings, there is no definitive medical diagnosis for autism.”

While there’s no denying that Savage’s initial remarks were cruel and ignorant, this situation has made one thing perfectly clear: autism is big news. It’s the latest celebrity cause. It’s the new chipotle, the disorder du jour, and now it’s a plot line on NBC’s “Days of Our Lives.”

And when it comes to protecting autistic children from discrimination, everything else takes a backseat.

She continues, by citing the situation of a child melting down on a plane and the resulting actions of the stewardess and pilot:

Consider, for instance, an incident last month involving a mother and her 2-year-old autistic child who were escorted off of an American Airlines flight after airline personnel declared the boy’s behavior “uncontrollable.” According to the airline, the child’s behavior simply compounded an unsafe situation stemming from the mother’s refusal to place her carry-on bag in the overhead compartment and the boy’s inability to remain in his seat.

Naturally, the mother’s story differs. In her telling it all comes down to the airline not understanding that, due to autism, the child had special needs to which the airline should have been more sensitive.

She claims, for instance, that the attendant repeatedly came by to tighten the child’s seatbelt because, in the mother’s own words, the child “was wiggling around and trying to get out of his seatbelt.” When the attendant reached over to tighten the child’s seatbelt again, the mother says she warned that the action would exacerbate her son’s autistic behavior. The child once again got out of his seat.

Her conclusion:

While the pilot and the airline are being pummeled on blogs for their “cruelty” — and at the risk of sounding insensitive myself — I can’t help wonder when “special needs” became synonymous with disregarding the needs of others, or when the parent of a child with special needs was accorded special needs of their own.

As I’ve shared before, I have an autistic son. And, as it turns out, I had a very similar travel situation, except that it turned out differently. Here’s what happened: My husband, just-turned-three year old autistic son and baby daughter were taking our first plane trip to a family reunion. My son hadn’t traveled on a plane before. His personality was docile, non-aggressive and he rarely melted down, but we were still nervous. It was new. Autistic children don’t do “new” well. So, we get on, the door closes and the engine starts, so the pressure changes. Now, a typical child often melts down at this point. The pressure changes hurt delicate ears which is why all people inwardly groan when they’re seated in a child’s proximity. Well, my son started screaming…in pain. He tore out of my arms, started running for the plane door, and started tearing at it trying to escape. He was obviously suffering. The other passengers were as horrified as we were. It was obvious that he wasn’t throwing a fit or being rebellious, he was anguished. I ran after him, scooped him up, and looked at my son in despair. We weren’t sure how it would go, should we ask them to return to the gate? It was horrible.

I held him close as he sobbed and screamed. The stewardess came by but did not force me to put him into a seat. She could have. Instead, she came over and asked what could be done. I said, nothing, I’ll just hold him and I did. I essentially nearly had my biceps ripped out holding him close so he couldn’t escape. He sobbed himself to sleep and was a zombie the entire family reunion visit. He had retreated into some remote place. I was deeply distressed about forcing him through the return flight. The return trip was a bit better, but he sat in my lap again.

We didn’t take him on a plane trip again for years. And when we decided to try again, we were very worried. And he cried and shook and leaned into us, but he was okay, he stayed buckled in his seat, and by this time we could explain what was happening. He still grabs his sister’s hand on plane trips, but he can do it.

I’ve already said that Michael Savage is a moron about autism. But society at large isn’t much better educated. Here’s the problem: Autistic children look “normal”. If they had some sort of physical deformity, I think people could handle accommodating them better. For all the talk of a child-centric society, children in general are not cut much slack. Special needs children who look like typical kids get the same treatment.

Now, I’ve seen the dopey parents with undisciplined children running amok in restaurants and stores. And even disciplined children have bad days. Each of my children chose to throw a public fit–once. But it happened in places like Target and Dillards and they were public and the impression could definitely be that I have unruly children. When I say it happened once, it’s because it was a learning experience. It didn’t happen again.

For my autistic son, it has never been about discipline. His melt-downs were always stimulus response cycles. They were unpredictable and still, we did everything we could to predict them. We also severely limited our lives. For the first four years of his life, we simply didn’t go anywhere or do much of anything. The plane trip was a big risk, it back-fired and we retreated. Very often, the parents of autistic children who do venture forth, do so with trepidation.

Autism is constant, unrelenting work. The diagnosis often takes forever to get. The treatments vary in success and aren’t paid for by insurance. It strains relationships. The child may or may not make progress even after investing significant resources. They don’t potty train. It takes years and years if they do. They self-stimulate to deal with pain or discomfort or whatever it is that’s bothering them. Parents are told by ignorant pediatricians that the child will “grow out of it” or is just delayed when early interventions are key to development and outcomes.

Down here, in Texas, many churches are starting to do outreach for parents because government resources are non-existent. So, there are “date nights” sponsored by the “Special Needs” ministry. Parents also worry non-stop about leaving their child with anyone else for a variety of reasons. First, the child might react unpredictably. Second, the child cannot communicate. Do this search: autistic child + assault. You’ll get the few, bizarre cases of the child assaulting someone. More likely, you’ll get horrifying cases of the autistic child being assaulted. Why? They are the perfect victims; they can’t speak.

So while I have sympathy for the argument that autistic children are the latest faddish protected class, I have to chuckle. Please. The lives of most families with an autistic child are unrelenting hell. If families do attempt to engage the world–which eating, wearing clothes, going to church, and working tend to force, other people will have to deal with the uncomfortable feelings they have when they see a child acting “weird”.

As for the safety of others: that is why early intervention is so important. These children and their parents, need help when the child is small. A 6’0″, 200 pound emotional child is dangerous, indeed. I understand a church putting on a restraining order because the son is aggressive, but I understand, too, a mother’s desire to get spiritual sustenance after years of raising this child. The church could spend it’s resources, not on a lawyer, but on special care so the mom could get a break on the weekends. How about that? Churches are in the business of tending the weak, are they not?

It is easy, from the outside, to judge these families. In addition to receiving a bleak diagnosis, parents have to fend with discipline advice, harsh condemnation and isolation. Also, and I saw this over and over at the conferences I attended, overwhelmingly, mothers deal with the child because the parents separated–often because the father had been undiagnosed but was on the spectrum somewhere himself and he either could not or would not help. (I met one father in this position.) These single parents must be highly commended. Working to survive, in addition to caring for these children is a monumental task.

The safety of everyone, autistic or not, is paramount. First, do no harm. After that, though, what should be done? Right now, parents soldier on alone, but these children, all grown up, will be society’s problem. Parents lament about their child’s care after they die. What will be done? I shudder to think of these children, the perfect victims, being housed in institutions with the mentally ill abusers. It already happens in early intervention: “at risk” children (code for the emotionally damaged aggressive, future-bullies-of-America, eventual prison inmates) are placed in the same classroom with children on the Autism spectrum.

Prison or institutions is where the one group ends up. Parents care for the other group, but they eventually need help. For as loud as the Autism awareness folks screech, it doesn’t really seem like anyone is listening.

To me, the solution isn’t a government program or huge institutions, but tax cuts so parents can choose educational resources and places for their children. Let the free market decide this. There is no question parents need help, let them have their tax dollars so they can find a solution.

Oh, and as I said before, it’s a free country, Savage can say what he wants, but on this, he’s wrong.

  • John F Not Kerry

    Melissa,

    As I have shared before, I too have an autistic son. Much of what you wrote I have lived. We are blessed here (MPLS-St. Paul metro area) to have many churches with disability ministries, and many wonderful education and therapy opportunities. One organization that parents of special-needs kids should check out is Joni and Friends. It is run by Joni Eareckson-Tada, whom many will remember as a young woman in the late 60′s (or early 70′s) who was severely injured and significantly paralyzed in a diving accident.

    Anyway, I had no time for Savage before, and even less for him now.

  • http://mkfreeberg.webloggin.com Morgan K Freeberg

    Melissa,

    I, too, have an autistic child.

    I could write that if I wanted to…after all, he’s been diagnosed. Trouble is, everyone who’s met him, his counselor included, has determined (in a formal capacity or otherwise) that he’s normal, and even the doctor who made the diagnosis has backed off and done that “hem haw” thing doctors and therapists do when they “diagnose” something and have second thoughts.

    His mother has been an energetic and frenzied cheerleader for getting him diagnosed with something and is now combing through the paperback books looking for something he can be saddled with. But even she, now, is emphatic that the boy DOES NOT HAVE AUTISM.

    I guess I should keep my mouth shut and defer to people who really do have autistic kids, or the doctors who treat them. Except, as the parent of a child who’s been diagnosed falsely, it seems in the nature of this little dust-up I’m the real subject matter, or rather my son is. This situation is exactly what Dr. Savage is talking about. For five years now I’ve been asking “how come the boy only has autism when he isn’t here, with me?” FINALLY the mother and the teachers are starting to wise up about it.

    But dollars flow when diagnoses are falsely made, so this is a real uphill battle.

    My questions:

    1. How come people use horror stories about genuinely autistic kids, to argue with Dr. Savage? You should be able to answer that; it’s what you just did. Here’s what you’re not seeing: I read stories like that and my thought is, well, in case there are further doubts, I’ll have to file this story — My child isn’t doing those things. I think (partly because of the indelicacy of Savage’s remark) folks like you have lost sight of what the debate is. We aren’t debating whether autism exists; we’re debating whether it’s being over-diagnosed. And it is. Wretchedly. For government money.

    2. I see parents of autistic children are not taking offense at me for agreeing with Dr. Savage, or coming to his defense. My position is that he is guilty of mixing his “doctor” gig with his “shock jock” gig, failing to clarify in what capacity he’s speaking. So it isn’t as if I’m really defending him; I’m saying he’s got a good point and he’s right about some things, which is slightly different. So the parents of autistic kids are really getting offended at anyone who won’t join the witch hunt and string Dr. Savage up by his short hairs. Which answers your question: The kids may not be sacred cows, but this disorder certainly is one. Why do the parents who personally live with these challenges every single day, seem to be incapable of digesting answers that aren’t simple and black-n-white?

    3. On that note — how are their (your) children diminished just because the parent of ANOTHER child wants to show some skepticism about whether his child is part of the autism crowd? How does this impact the first kid? Seems to me a more logical reaction would be “Thank you for questioning the system, to ensure the finite resources are available to help the kids who really need help, like mine.” Doesn’t that make sense? The time and expense needed to accommodate the special needs of kids who have this disorder, are not trivial, as you’re aware.

    4. Autism is unique in being treated as a “spectrum” of disorders, which I think is an abominable and reprehensible practice and I’ll tell you why. Some of these are real disabilities, with physical definition. Neurological damage which can be verified by means of simple tests. Others are behavioral, and are matters of opinion. Kids with PDD-NOS who are extreme cases, it’s a pretty much settled thing. But with the borderline cases that could just be quirky personalities and nothing more exotic than that, this causes real problems. The “laymen” hear their children have been “diagnosed” and they think it’s lesions on the brain stem, or something that can be validated — in fact, it’s nothing more concrete than a doc going through a checklist and saying “yeah, I think he acts that way.” Completely subjective. As I’ve said before, there are valid reasons for continuing to evaluate both types of disorder here and continuing to refine what we know, and learning about what we don’t know. But mixing them together in the same bag? That’s terrible. It causes confusion, damaging, predictable confusion, and I don’t see anybody working to alleviate the confusion. I think they’re in it for the money.

    5. I’ve used the terms “disorder” and “disability” somewhat interchangeably here because I’ve noticed that’s what the behavioral health profession has a tendency to do. When discussing these borderline cases, these terms should not be intermixed. A disorder is something that is out of the ordinary; we all have disorders of some kind or another. But as I continue to tell people, and I’ve been sounding like a broken record for many years now: A disability is not something you drop when you go visit your Dad, and he expects you to not have it.

  • http://melissaclouthier.com Dr. Melissa Clouthier

    Morgan,

    I completely hear you. You’ve made an interesting list. Let me add one for you:

    6. Autism can be healed. And this is where I’ve butted up against resistance. My son started out very extreme and non-verbal. Not as extreme as some, mind you. But we have NOT given up. Here is the irony–without getting the diagnosis, we wouldn’t have gone searching for answers as quickly. We would have flopped around and wondered and I’ve seen people do just that. Once I saw the problem, I searched. We changed diet, behavioral interventions. I learned language therapy and taught him to use his echolalia to speak. And on and on.

    But now, the diagnosis is counterproductive. Schools let him off the hook and this is where I’m pissed off. Because he’s “disabled” they don’t have to expect anything of him. He does well “for an autistic kid”. I call bullshit. He needs the same educational and behavioral expectations, like we expect at home. So, I homeschooled this last year and kicked his butt. And he did great.

    I have seen so many parents give up and not try. The diagnosis means the child is helpless and hopeless. Bull. It’s not true.

    Maybe it’s my limited experience but I have yet to see a child misdiagnosed with autism. My son’s classmates are pretty clearly diagnosable. Now, ADD and some of the other dx? Definitely.

    And if you read my other post, you’ll see that I admitted that Savage has a point. American kids are WAY over medicated. And certain changes would make lots of childhood syndromes evaporate. And I know all about trendy diagnoses. For a while, it was reflux. Adenoids. Appendix removal….yada, yada.

    The families I see with Autistic kids aren’t making it up. But I’m also supremely frustrated with parents who say that diet and behavioral interventions don’t work. My son is living evidence that they do. They know where he started–often behind their own children developmentally.

    I fully expect my son to go to college, get married and live a regular life. To which, I get patronizing smiles from school administrators. But they can kiss my ass. He’s already doing way better than anyone expected.

    So, I hear what you’re saying. But I also don’t see the excessive diagnosing, either–of autism. ADD, now that’s a completely different story.

    And I do know that a lot of this depends on the pediatrician, too. My son was diagnosed by a neuropsychologist. When I thought that something was wrong, which I did for a long time and a speech therapist finally hesitantly suggested it, I didn’t stop go, I found out the best person and had him evaluated. And then, I researched every possible alternative because there was no way in hell I was going to medicate him. No freaking way. He has yet to have a med and won’t. I also refused to do barbaric (in my opinion) behavioral drilling.

    So, I understand what Savage was saying, I do. And in my other post I acknowledged his points. But good grief, parents of TRULY autistic children go through hell. And I’m not interested in having some blowhard use his perch to say that a smack on the head will get that kid to behave better and his initial comments, which I linked to the video of his statement directly, said that. And even still, I defend his right to say what he wants. I just disagreed.

    A long-winded response, I know. I respect you Morgan. I’ve read your writing for a couple years. And I think we agree, mostly, on this.

  • http://mkfreeberg.webloggin.com Morgan K Freeberg

    Yes, I agree about the mostly-agreeing. Savage is re-writing his context; he’s using the Hillary-Clinton “out of context” defense, declaring his context after the words are already out of his mouth.

    I do think he’s sincere — he did intend to limit is comments to those children falsely diagnosed. But that’s not what the letter of his remarks was.

    One thing I would like to address here —

    But I also don’t see the excessive diagnosing, either–of autism. ADD, now that’s a completely different story.

    This is what gets under my skin about the “spectrum.” It is a dynamic thing. Aspergers, for example, used to not fall within it; now, they’re bringing it in.

    I hear what you’re saying about what the parents go through. Duffy over at Pencader Days sounds off at his place, and occasionally mine, about what everyday life entails, and — just whoah. But again, you see, this is what convinces me that abuse of the system has taken place. I’m not going through that. My son isn’t anything like this, and yet, there’s the diagnosis in black and white.

    So these parents of autistic kids want to attack Savage, and they (not necessarily you) demand I go along in lockstep that there is no exploitation taking place, no false diagnosis happening. That, or keep my mouth shut. Eh…sorry. I’ve got my own battles to fight as a parent, and mine are with the bureaucracy of the school system. I really sympathize with the things these people have going on at home, but I can’t pretend it isn’t happening just to make them happy.

    Kudos to you, by the way, for fighting the good fight with those knuckleheaded administrators. Like I keep telling Kidzmom: We are PARENTS. We care about where he’s at, and what he’s capable of doing, when he’s eighteen. The teachers can dish out whatever platitudes and talking points they want to, but at the end of the day, that is off their radar. Not part-o-the-job.

  • http://melissaclouthier.com Dr. Melissa Clouthier

    Morgan,

    ALL I think about is 18. All the teachers think about is getting through the year. It is a constant fight.

    Thanks for commenting here.

  • http://caffeinatedthoughts.com Shane Vander Hart

    Great post. I have a nephew that is autistic, and I think Savage is wrong. I also think the response to his comments have been ridiculous as well. It is a free country, and he is free to make stupid remarks. We are free not to listen to him.