Rx for Battle Fatigue

©2008 Ellen Notbohm. Please contact the author for permission to reproduce in any way, including re-posting on the Internet.

When New York Times columnist David Brooks wrote about the fall of New York governor Elliot Spitzer, he lumped him into the category of “Type A men … just not equipped to have normal relationships. All their lives they’ve been a walking Asperger’s Convention, the kings of the emotionally avoidant.” (The Rank-Link Imbalance, March 14, 2008)

Hmm. I’ve been to numerous autism conventions but I’ve never been to an Asperger’s Convention of the Emotionally Avoidant; wouldn’t that be an oxymoron?  All the people I meet at autism conventions, many of whom have autism or Asperger’s, are trying to connect. My son Bryce would be mightily surprised to have himself judged as “emotionally avoidant” as he throws himself into his high school life of school dances, texting and emailing his friends, running on the 300-member track team (including traveling on the raucous, smelly over-crowded bus to away meets). Brooks’ outrageous remark denigrates Bryce’s dearly won social competence, acquired over a lifetime of patient teaching and coaching from dozens of teachers, therapists and family members who believed in him. And anyone who has ever met Bryce would hasten to tell you that has more integrity and common sense in his little finger than the likes of former Gov. Spitzer will ever have.

I wanted to write to Mr. Brooks: I read your column all the time. Now it’s time you read mine.

Yes, it’s time for me to re-run Rx for Battle Fatigue, my description of how I confront this kind of ignorance, why I consider every attack like this an opportunity for enlightenment, and rather than discouraging me, it gives me the energy to go on.

Rx for Battle Fatigue
by Ellen Notbohm

After you’ve been to a few hundred white-tablecloth business dinners, the food and the deal points change, but otherwise they are all pretty much the same. This one was ambling along that way, until the conversation veered off the path.

I’m sick of hearing about ADHD, announced the neatly pressed executive across the table. It’s nothing more than a convenient excuse for parents who don’t have the guts to discipline their children.

Interesting, I reply. And is your experience clinical or practical?

I beg your pardon? He blinks at me blankly.

Clinical or practical? I persist. Do you work with these children, or are you parenting one? Are you a doctor, a psychologist, a teacher, a professional of some sort? Or do you live with a child with ADHD?

Oh, no, no, no, he says with a smug shake of the head. None of that. It’s just what I think.

And here’s what I think, I told him. I have thousands of hours and thousands of dollars invested in living with and attempting to understand, care for, educate and protect such a child. And the many devoted professionals with whom we work year in and year out possess a body of factual knowledge strongly supporting that ‘what you think’ is uninformed, unkind and judgmental. People like you make me more tired than an entire room full of ‘hyperactive’ kids.

My response admittedly one of exasperation, and since then I have come a long way in my ability to respond in a more productive fashion to such situations. But that was where I was at that moment – one step short of giving him my favorite snappy comeback, the raising of three fingers together and telling him to read between the lines. (I’ve actually only used that one once, but knowing it’s in the arsenal makes me smile.) I don’t remember if I blew the business deal that night, but it never occurred to me that it wasn’t worth it. There were six people at that table, and if I caused even the slightest flicker of an attitude shift in even one of them, the evening was profitable enough for me.

As parents of children with autism, the list of what makes us tired is endless. The meltdowns, the sleeplessness (theirs and ours), the siblings who don’t get enough attention, the minutiae of preparation each outing requires, the grinding challenge of trying to adequately feed a child who only eats four things, the social isolation (theirs and ours), the endless carousel of service providers and how to pay for them. But nothing makes me more tired than perpetually jousting with a large portion of the general public who feels that children who qualify for special education are some sort of societal add-on, lacking in legitimacy and value, a drain on the system, and that money spent on special ed somehow inflicts injustice on the ‘typical’ learner. This is a real live letter to the editor that appeared in our newspaper in 2005:

Mainstreaming special needs children hurts all children. My kids have been in classrooms with some of the special-needs kids who really can’t do the work and require so much time of the teacher that all the normal kids get lost in the shuffle.

Our schools are failing the average student, who becomes the real burden to society. These are the kids who need help. Our schools are out of money now. What we don’t need is to add more cost for a handful of ‘special people.’

I know it must be heartache for the parents of these kids, but if it means relocating to be closer to a facility that is better suited for their child, so be it. My heart goes out to these families, but I have even more compassion for the kids who are shuffled through the cracks.

I’ll bypass the question of how this woman’s heart could go out to anyone when she so clearly doesn’t have one to begin with. Or how dangerous it is when we begin trying to define what a ‘normal’ child is. As Canadian songwriter Bruce Cockburn put it, “the trouble with normal is it always gets worse.”

Having to face the bigotry of an uninformed world-at-large comes with the territory of having a child with an autism spectrum disorder. There is no gel-tab available to help you swallow that. But you do have a choice about how you confront it. The menu from which you can choose includes anger, denial, despair, frustration. Or it could include patience, resilience and a willingness to view ignorance as opportunity.

Since the years-ago evening I told off Mr Business Dinner, I’ve authored several books on raising a child with autism, and with that comes mail from readers. At least 99% of the mail I get is positive, but there is the occasional missive from someone who is very, very angry with me. Am I crazy, they ask, or just full of bull? How DARE I voice such a viewpoint?

My husband never understands why I even respond to such vitriol, but I always do respond. Every point of contact is a break in the clouds, when for both reader and writer can widen their perspective on the very perplexing, bottomless and amorphous subject of autism. I counter in a thoughtful, respectful but heartfelt way that emphasizes how many different ways there are to approach the issues within autism, that there can be different answers for each different child, family and school, and that in our differences we are still pursuing the same end goal – that each child with autism achieve the fullest of his potential and be able to take his place in society as an adult carrying as much of his own weight as possible. I point out that this goal is no different from what most people want for their own ‘typical’ children – and for themselves. Every time I get a return response along the lines of gee, I never thought of it that way or wow, I didn’t know that – I know I did the right thing in putting myself in the line of fire and ‘taking one for the team.’

There are acute differences of opinion within the autism community, and dealing with these alone can make you weary. But standing up to the ignorance of the general public can feel positively athletic; it requires Olympic endurance. Over the course of raising your child, you’ll face a spectrum of responses just as wide and varied as autism itself:  benign lack of information, open hostility, complete indifference, medieval thinking, Pollyanna thinking and everything in between. It gets a lot easier if you bear in mind at all times two things:

Knowledge is power. You have the knowledge, therefore you have the power.

You have two kinds of knowledge, therefore you have two kinds of power. The obvious one is that you have knowledge about autism, factual information as well as your own firsthand experiences. That’s the knowledge you use to counteract ignorance, misconception and prejudice in others. But even more powerful is the knowledge that you know your own child better than anyone else, and you know that the choices you’ve made in what you are doing and pursuing for him are the right ones. Hold fast to this knowledge in the face of that ignorance, misconception and prejudice, and you will not blow over no matter how stiff the wind. Trust your instincts, our very first pediatrician told us. You know more than you think you know.

Another thing my husband doesn’t quite understand is how I have been able to use this second kind of knowledge/power to overcome my anger at those who denigrate our efforts, and replace it with something resembling pity. It was hard and painful, but I was determined to do it. For one thing, anger is draining. My stamina is finite; I wanted to put it all into constructive efforts for my sons and not have to keep sticking my finger into little dikes dribbling rage and resentment. “Assholes do vex me!” was the motto of a long-ago young college professor friend of mine, and don’t we all have moments wherein we agree! But I truly can say that I feel sorry for those who are not able to see beyond mean stereotypes, who leap to judgment without factual backup, who fear what they do not understand and who live with the constant anxiety that someone will take away their ‘fair’ share of whatever is being divvied up or allocated. I’m glad I don’t have to live life as that kind of person, because I think it would be much harder to ‘recover’ from that sort of smallness than from autism – in spades.

Making a difference one person at a time makes a huge difference over time. I’m happy winning over hearts and minds one by one because I have faith in the ripple effect. Maybe I wasn’t able to participate in the autism walk-a-thon or write the big check to the fundraiser. But every person who walks away from me understanding just a bit more than s/he did before will likely share it with someone else who will, in turn, do the same. That sort of ‘passing the talking stick’ ultimately makes life easier for my child, your child…and you and me!

Running the marathon that is raising your child with autism is almost certain to make you tired. But think about how many different ways there are to be tired. There’s the tired that is laced with defeat, fear and loneliness. And there is the tired that says, I gave it a good effort and look how far I got!

So I wrote back to the reader who berated aspects of my writings as “crazy,” who said autism could never be seen as a gift, but “rather a curse.”

I told her that the bedrock of my attitude is that the individual with autism is not a bundle of ‘broken’ pieces but whole person, full of their own unique ideas, dreams, fears, preferences and quirks. “Autism does affect the way they think and the manner in which they respond to their environment, social and physical,” I wrote. “But to characterize it as a ‘curse’ does not reflect the experience of every person with autism. Much of any individual outcome will be dependent upon educational, attitudinal and biomedical approaches taken by those providing care and guidance to the child with autism.”

I described to her Bryce’s journey, beginning at age 3 when he was nonverbal, sensory disordered, suffered daily meltdowns, lacked age-appropriate social skills. Today at 14 he is 4.0 student, plays team sports, acts in plays and film, dates, camps, surfs, cooks, does his own laundry and is generally more capable and responsible than many teens much older than he is. “It’s always interesting to hear the occasional person suggest that because he has done so well, maybe he didn’t actually have autism to begin with,” I told her. “The dozens of devoted teachers, therapists and family members who have worked with him over the years know better.”

DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) is only the beginning of the definition of autism, not the last word. By its very nature as a spectrum disorder, there can be no one ‘correct’ approach. Whether or not we agree about the possibility that Mozart had autism is irrelevant. What is relevant is what we get up and do every day to help our children with autism move toward the satisfying, productive adulthood to which they are entitled. Some will make it; some won’t. For each child, within either outcome, we have to look not only at the child but also at ourselves, and ask why.

I thanked my reader for sharing her thoughts. “I learn something from each and every one of my readers,” I told her, “and I value that.”

I did not expect a response, so I was greatly surprised when one arrived promptly.

Dear Ellen,

Thank you very much for considering my critique and giving me some food for thought. The story of your son really does amaze me. Probably a big part of his progress has been your positive attitude and I really admire that.

Maybe I’ve seen autists too much of a lost cause, but I am glad that reality proves me wrong.


© 2006 Ellen Notbohm

This article originally published in Autism Asperger’s Digest, November-December 2006, and included in the anthology The Autism Trail guide: Postcards from the Road Less Traveled, by Ellen Notbohm (2007, Future Horizons)

Author and columnist Ellen is a two-time ForeWord Book of the Year finalist and a regular contributor to magazines, websites and newsletters around the world. To contact Ellen or explore her work, please visit www.ellennotbohm.com.