Soooo Tired . . .

Madeline Kahn Tired

How tired am I? Let me count the ways.

Physically, I’m tired from the early morning wake-ups from the youngest and the late-night conversations with my wife about the kids’ various challenges.

Emotionally, I’m tired from managing melt downs, redirecting perseverations, calming anxieties, and comforting socially unaware kids.

Mentally, I’m tired from attending doctor appointments with my kids and trying to keep track of which child uses which medicine, and the various effects and side effects each one experiences.

Organizationally, I’m tired from trying to figure out how to schedule therapy sessions for the kids and still keep on top of my fifty-hour-a-week job, as well as take care of Katie. And myself.

Motivationally, I’m tired from trying to help the kids who tend toward anxiety to keep moving forward and not give in to their frustrations.

Spiritually, I’m tired from battling dealing with my own bouts of fear, frustration, and anxiety.

Yes, I’m tired. And if I’m tired, just imagine how tired my kids must be. But that’s a different subject for a different post.

An Attitude against Platitudes.

I don’t like to complain because I don’t want sympathy or, worse, pity. But the plain truth is that this autism parenting gig is hard work. There are so many twists and turns to ASD that it’s next to impossible to try to plan for the next challenge. Because every person with autism is mind-bogglingly unique, there is no reliable road map to guide you through the terrain. And because most other ASD parents are worn out traveling their own path, it can be hard to connect with fellow travelers—at least anyone  who has the time and energy to listen. (Thank God for Facebook!)

So if I don’t like to complain, why am I . . . complaining? Because every now and then I like to offer a corrective to the platitudes that special-needs parents can hear. Sayings like:

  • I don’t know how you do it.
  • God only gives special kids to special people.
  • You must be really strong to handle all of this.
  • I could never do all that you have to do.

PTSD Parents.

Mind you, these sayings are usually offered in good faith and come from a place of love and respect, so I don’t want to dismiss them—or the people who say them. But idealizing special-needs parents can be similar to the way we lionize the men and women in the military. We call them heroes and warriors and guardians of our freedom. And usually that’s what they are. But such vaunted language can cloak the emotional and psychological trauma that many who have been in combat have experienced. We sanitize the brutality and dehumanizing power of war by putting “Support Our Troops” magnets on our bumpers and applauding soldiers in the airport. But these very soldiers are bearing a burden few of us can imagine—and the Veterans Administration is woefully underfunded..

I don’t mean to compare my experience to that of someone who has been shot at, or worse, who has had to kill a fellow human being. But according to a University of Wisconsin study, parents of special-needs children often exhibit stress levels comparable to combat soldiers. In fact, many of these parents are diagnosed with PTSD or situational depression. And looking back on some of the instances of high drama we’ve experienced over the years, I can easily see how this is the case. As I said above, this is hard stuff.

But back to the not complaining point. The thing is, we don’t think about how hard it is all the time, so we don’t usually complain. It usually happens only when we get really, really tired. Usually  we’re just too  busy trying to keep up and keep awake. It’s not that we’re heroic; it’s just that we love our children. Like any other parent does.

Nothing Special.

So to those who say, “I don’t know how you do it,” the answer is easy: I’m not aware of any alternatives. You don’t count the cost when someone you love needs you. You just do what you need to do.

Anyway, thanks for reading. I didn’t have a major point to make. I just wanted to get this off my chest. Katie and I are not heroes. We’re not special or extra blessed. And I’m sure most of you, if not all of you, would handle our situation just as well as we are doing—and maybe a whole lot better! We’re just everyday people trying to take things one day at a time. And we’re tired.

So. . . . Very. . . . Tired.

P.S. For those who don’t recognize it, the picture at the top is of the incomparable Madeline Kahn, as Lili von Shtupp, singing the song, “I’m Tired” in Mel Brooks’ Blazing Saddles. Here’s a link to the song. And if Mel Brooks isn’t your thing, well that’s a crying shame. Let me offer you a different visual.


“We Are Not Diseased”

Famous Autistics Word Cloud 5

I’ve been feeling pretty good lately, and I’ll tell you why. My oldest daughter (14) did something that impressed me no end. Her Health class has been studying mental illness for the past couple of weeks. You know, the usual teenage awareness stuff: depression, anxiety, anorexia, suicide. It was all going pretty well, too. No negative blowback from my girl, even though she’s keenly aware of her own diagnoses.

But then the class turned to ADHD, and this happened. Introducing the lesson, her teacher said something like, “Now let’s look at another disease, ADHD.” This prompted my daughter (who has ADHD along with autism) to raise her hand. “Excuse me,” she said, “but ADHD is not a disease. I have ADHD, and I’m just fine.” The teacher, caught off guard, apologized for having misspoken, and then moved on with the lesson. Pretty impressive, wouldn’t you say? She definitely deserved an attagirl for advocating like that.

However, when she told us the story that night, I could tell she was more upset than she let on at school. Because she tries hard to be good in class, she kept her response there short and polite. But she let it all out at dinner. “We’re not diseased,” she declared, pounding the table with her fist. “We’re different, not less. Why do people do this to us? I can’t believe he said this. And he’s a Health teacher. He should know better!”

I couldn’t agree with her more, and I told her so. I also told her how proud of her I was. It was wonderful to see that my daughter has her head screwed on straight and doesn’t tolerate nonsense. She gets that ADHD—and autism, for that matter—is nothing to be ashamed of. She gets that she’s not diseased or locked in to a life of limitations. She has hopes and dreams and ambitions, and she’s determined to accomplish them—no matter how much BS she has to deal with along the way.

A Quick Pivot.

All of this got me thinking about recent events, especially the mass shooting at Umpqua Community College in Oregon. News of that attack seemed to be a kind of tipping point in the gun control debate. With President Obama taking to the podium yet again, this time sounding exasperated and even disgusted, people are talking about gun violence more seriously. And that’s a good thing.

But all this attention has its down side. For every time another mass shooting occurs, talking heads on TV and the radio pivot almost instinctively to the topic of mental illness. They decry the sorry state of mental health care in the country, and suggest that if we only did better at this, massacres like these wouldn’t happen. And when I hear stuff like this, I cringe. 

Stigmatizing the “Other.”

Of course, I’m all for improved mental health care, but there is no real science linking mental illness to mass shootings—or to shootings in general. In fact, those with mental illness are far more likely to be the victims of such catastrophes than the perpetrators. As The New York Times recently reported, “Fewer than 5 percent of gun crimes are committed by people with mental illness; fewer than 5 percent of people with mental illnesses commit violent crimes.” And so I cringe every time mental illness enters the conversation. I can already feel the damage that it will do to people with mental illness.

  • I see the way it stigmatizes them.
  • I see how it turns them into a class of “others” who are alien to “normal” people and inferior to them.
  • I see how, intentionally or not, this kind of talk stirs up fear, which makes it harder for the people to find the acceptance and help they need.
  • I see how it presents them as weak and out of control, when quite often they’re stronger than their peers—with the strength that comes from adversity.

Something else troubles me about this conversation, though. Whenever mental illness is brought up in the context of a mass shooting, autism follows fast on its heels.

Mental What?

I commented on this back in 2012, when MSNBC host and former Florida congressman Joe Scarborough insinuated that James Holmes, the Aurora, Colorado, theater shooter, had autism, and that this was a major reason for his attack. Scarborough’s comments prompted a huge outcry, and he later issued a semi-apology. But it was too late; the damage had already been done.

But now it has happened again. Not long after the Oregon shooting, a Facebook page popped up called “Families against Autistic Shooters.” It was vicious and hateful—and more than a little ill-informed. Fortunately, the page didn’t last very long. But the fact that it showed up at all demonstrates that we still have a lot of work to do.

The speed with which people glide from mental illness to autism is as confusing as it is disheartening. ASD is not a mental illness. It just isn’t. It is a neurological difference (disorder if you must) in which the autistic person’s brain is wired differently from the typical person’s brain. But it’s not an illness. You can’t control it with medication, as you can control OCD or anxiety. You can’t shock it away with electrodes as you can do to severe depression. You can’t “overcome” it through talk therapy or yoga or meditation. You can’t even pray it away. It just is, and the best thing you can do is make room for it.

Words Matter.

I’m not saying that everything is rainbows and unicorns for autistic people—especially those with more severe manifestations of the condition. But let’s not call it an illness or a disease. That’s where the word cloud at the top of this post comes in. It’s a list of famous, successful people, all of whom are autistic. Ask any one of them, and I doubt any one of them would call themselves mentally ill. And they shouldn’t.

Words matter. They tell you what something is—and what it isn’t. If you call a cat a fish, and try to put it in a tank full of water, you’ll be doing an injustice to the cat. (You’ll also end up a bloody, scratched-up mess.) If you call autism a disease and treat it like a disease, you are doing something very similar—an injustice to autistic people. For calling it a disease naturally opens the door to discussions about cures. And that can get pretty dangerous. Just ask the people who have been subjected to bleach enemas and chemical castration in the name of a “cure” for autism.

If you accept that autism is a difference and not a disease, you’ll treat it differently. Instead of spending your time and money looking for a cure, you’ll try to help autistic people navigate a neurotypical world. You’ll dedicate yourself to educating the public about the gifts and talents that autistic people have to offer, as well as the challenges they face. You’ll make it easier for others to accept autistic people for who they are, and you’ll work to eradicate stigmas and bogus information related to it. And that’s how you make autistic people’s lives better.

Lighten Up.

So lighten up on the autism stuff. People with autism already have enough to deal with. Don’t make them scapegoats as well—unless, of course, you want to deal with my daughter.

A Gracious Apology

Sorry in the Sand

A couple of days ago, I posted about an online article that appeared on a Catholic website, which I felt portrayed autism in a hurtful and inaccurate way. I mentioned that I had contacted the author and asked him to either reword his piece or remove it altogether. I also promised that I would keep you all informed.

Well, guess what? He got back to me, and in very good time. His first message was part self-defense and part apology for any way I felt hurt by his words. He was gracious in his words, but unwilling to make any concessions. His message came late in the evening, and I was too tired to formulate a response that would help him see the effect his words were having on the autism community. So I went to bed a little disappointed, but ready to continue the discussion the next day.

When I woke up, I was greeted by another e-mail in which he said that after sleeping on it, he had decided to take down his article after all. Sadly, he was hampered by the fact that another site had picked up his piece, and he no longer had control over where it was going. So he came up with another solution—one that really touched my heart. He attached the following note to the beginning of his article:

AUTHOR NOTE:  In an attempt to address a serious problem I feel impacts the Church, I attempted to use autism as a metaphor.  I made a sincere effort to do so sensitively, based upon my understanding of the disorder. Since then, it has come to my attention that many people have been offended by my characterization of autism and my use of it in this context.  It was never my intention to offend any parent of a child with autism or any person with autism.  I have nothing but the deepest respect for the many people I know personally who live tremendously admirable lives in the face of the challenges autism spectrum can present.  Unfortunately, circumstances prevent me from simply removing this post (which I would have preferred to do to avoid unintentionally spreading any ignorance about autism), but I would like anyone who reads this to know that I am sincerely sorry for any offense I have given and that no disrespect was intended by my original article.  For those who would like the best information on how people with special needs can be welcomed in the Church and supported in their faith development I encourage readers to visit and support the National Catholic Partnership on Disability.  I thank you for your understanding.

What a kind gesture! He could have let the whole thing go and just move on. But he chose to speak honestly and humbly, acknowledging the hurt he had caused. I was quick to reply and thank him for what he wrote—and for listening to my concerns in the first place.

See what happens when you advocate for your loved ones? It wasn’t easy for me to write to this fellow; I was putting myself out there in a way I don’t normally do. At least not to strangers. But I knew I had to do something. I’m just grateful that he was reasonable and open-hearted enough to listen. But even if he wasn’t, it still would have been worth it. Some things are too important to remain silent about.

The Unfortunate Theory of “Spiritual Autism”

Buzz & Woody Broad Brushstrokes

So this was fun—not. Last Thursday, a Catholic blogger named Gregory Popcak posted an article titled “Spiritual Autism and the Catholic-Evangelical Divide.” In his article, Popcak describes people on the autism spectrum in the following way:

Their brains tend to see people the same way they see objects. They aren’t good at picking up or even appreciating the need for emotions and emotional cues.  In fact, the emotional demands of relationships often feel intimidating. Because of this struggle with the relational dimension of their experience, they tend to become fixated on curious hobbies and obsess over minute details.

Needless to say, I was offended by this characterization, and I found it to be demeaning of people on the autism spectrum. My children definitely do not look at Katie and me as objects. They may struggle with relationships, but not for the reasons Popcak states. If anything, the “Intense World Theory“ explains their struggles much better than the “Robot” theory he is espousing. The same goes for the many other autistic people I have come to know. They know the difference between a person and a thing, and they know how to treat people like people. Again, they may have some struggles in knowing how to relate or in regulating their emotions—causing them to shut down or retreat into their shells—but it’s not for a lack of trying.

What’s worse, Popcak uses the term “spiritual autism” to describe a certain deficiency in some Catholics’ spiritual lives—that they favor ritual and routine over relationship and interaction. That may well be the case for some, but it’s unfortunate that Popcak links this spiritual “deficit” to autism. It gives the impression that autistics aren’t capable of religious sentiment or spiritual experience. Again, it may be challenging, but it’s not impossible. (As an aside, I’m not a fan of his theological premise either. It sounds as if he is setting ritual in opposition to relationship, which isn’t wholly the case. But that’s for another time and another place.)

Yesterday, I wrote Popcak an e-mail stating my objections and asking him to either reword or remove his piece. I also posted a brief comment objecting to the article on his Facebook page. We’ll see if and how he responds. I’ll keep you posted. In the mean time, feel free to post your own comments on his page if you want. Just be sure to keep it civil and short. I don’t want to start a hate campaign against the fellow. He’s just misinformed, and a sloppy writer. He should know better than to paint with such broad—and harsh—brushstrokes.

“I’ll Miss the Kick-Ass Bitch”


The following depiction of a homeless woman with mental illness was posted by my brother on Facebook a couple of days ago. It was so moving that I thought I’d share it with all of you.

A bit of background: My brother is an attorney in the public defender’s office in the suburbs of Baltimore. He acts as legal counsel for those who cannot afford their own lawyer. A good portion of his clientele are drug offenders. Many of them are homeless. Many also suffer from mental illness. And he’s there to make sure they get the legal counsel that is their constitutional right. It’s a job he has had for decades, and he relishes it. Anyway, here’s his story. I dare you to read it and not be moved.

“I Need Help!”

A long-time client of mine who became a dear friend was killed in a hit and run homicide. She was chronically mentally ill. Her illness eventually forced her mother to put her out. She kept coming back to see mom. After a few days, things would get out of hand. Her mother, understandably, had to get a protective order to keep my friend away.

She was on disability, but that paid only enough for her to rent a room in someone’s house. That always ended badly. The police were called. She went from one shelter to another. Again, it would work out for a while, then she would run out of her meds or lose them or have them stolen. She’d be asked to leave. They would eventually ban her because of her behavior. No medication always led to bad things. So my friend would eventually end up homeless. Alone. It was hard for her to be around people. But when everything was under control, strangers liked her. She had a genuine and open smile.

Not too long ago, I was visiting a client who was housed in the same unit as my friend was. She had to be locked in her cell because she had acted up. I heard her screaming louder than anyone could bear to hear, “I need help.” It went on for so long that I had to cut my visit short.

The last time I saw her, in a holding cell just before she was released, she told me that all she wanted to do was hug her mother. Just once. Now, my mother isn’t here to hug. I can’t imagine knowing that mom is not far, but she genuinely needs the law to keep her daughter away. Only one hug.

She died alone. The coward who hit her just kept on going. She was homeless. She was disposable. She was invisible. She was so funny that tears would literally stream down my cheeks when she got on a roll. She told me that when I needed help, the kick-ass bitch (her) would straighten things out. She was a human being. She was my friend. She was a human being.

She died alone on the street.

She was killed early last Monday morning. I found out about it Tuesday afternoon. Wednesday morning, it hit me like a cyclone. Spun me around. I remembered that a friend always says Mass on Wednesdays near my office. I met him in the parking lot, sobbing. He asked the people there to pray for her. They are a small group of retired nuns. Some in their eighties, a few over ninety. They will pray for her. I will pray for her. I’ll miss the kick-ass bitch.

Homeless, Hopeless, Helpless.

It is a sad fact that many people with mental illness end up like this woman—homeless, hopeless, and helpless. Disposable, as my brother said. So many end up in prison because they have nowhere else to go. In fact, there are those who purposely commit crimes so that they will at least have a shot at food and shelter. That’s how low they have fallen. That’s how much society has failed them.

I have written before about my children having comorbid conditions along with their autism: OCD, anxiety, and the like. These are mental illnesses, plain and simple. The only difference between them and this woman is demographics. I make a decent living. Katie and I are able to provide a stable, loving home environment where they can grow and thrive. We make sure that they receive the medical and psychological care they need so that they have a good chance of living independent, self-sufficient lives. Of course, none of this is a sure-fire guarantee, but the odds are significantly better.

Many, many people are not so lucky. They are the forgotten, the ignored, the abused, the ragged people living on the margins. Thank God for people like my brother—true advocates and servants who are committing themselves to helping these people as much as possible!

Survey Opportunity

So a few days ago, I received a note on this blog alerting me to a study being done at Fordham University concerning the effects of spirituality on autism parents. It looks like a really good opportunity parents to help researchers understand one of the most  underreported aspect of many their lives. So I’m posting the note here, and encouraging everyone to participate. Note that it is concerned with how “spiritual variables may contribute to or detract from growth.” So this is meant to look at the topic objectively, and not ideologically.

So take a look at the note, and follow the link for the study. Let’s try to help the researchers get as full a picture as possible. Thanks!

Hello. My name is Elizabeth Tobin. I am a graduate assistant for Dr. Mary Beth Werdel, Ph.D., an assistant professor of Pastoral Care and Counseling at Fordham University in New York. We are conducting an anonymous study to explore spirituality as a coping resource for parents raising a child with an autism spectrum disorder.

The goal of the study is to increase our understanding of the ways spiritual variables may contribute to or detract from growth following the potentially stressful life experiences of raising a child with an autism spectrum disorder. It will take approximately 20 minutes to complete the survey.

I wonder if you could help us find parents by posting a link to the research study on your blog? We would be very grateful for any help you could provide.
If you have any questions about the project you may contact Mary Beth Werdel at

Survey link:

Words from the Unwise


So this bit of news has been making the rounds the past couple of days among autism and other special-needs parents. It seems that in two unrelated incidents, a police resource officer in a Kentucky grade school put an eight-year-old boy and a nine-year-old girl in handcuffs in order to restrain them—cuffing them around their biceps because their small hands would slip through the cuffs. Both students have ADHD, and the girl also had a history of some kind of trauma.

The school was aware of the children’s diagnoses, as was the police officer who cuffed them. Both students had been removed from their classrooms because of disruptive behavior, and when the principal was unable to contain the situations, the officer took over, employing the handcuffs. (Note: watch the video at the top of the article at your own risk. It’s very disturbing.)

According to the report, the girl was especially upset by the situation, to the point of needing psychiatric treatment in a hospital. Understandably, both sets of parents are suing the officer involved.

This is a very sad story, especially in a time when attention has already been focused on police officers abusing their power and mistreating people who live on the margins. These incidents may not rise to the level of Freddie Gray or Michael Brown, but they come pretty darned close.

I don’t want to say much about the incidents—I don’t like stating the obvious or dwelling on people’s stupidity. But I do want to look at the article that described the situation. Actually, not the article (although it does have a couple of really embarrassing typos), but the utterly irresponsible headline that was assigned to it:

Lawsuit: Officer handcuffed mentally disabled kids as punishment.

Disabled? Mentally? What does that even mean? The report only talks about ADHD and some unspecified trauma. It’s not as if the kids had been lobotomized or anything. There’s nothing in the report that indicated the students were “disabled” in the sense that most people understand that term.

It doesn’t take a genius to see how this terminology places a kind of perception filter over the whole story.

“Oh, the kids must have been truly and deeply disturbed.”

“I can understand why the principal let the officer shackle the children.”

“These are mentally disabled kids—it’s not as if they were ‘normal’ kids. I guess it’s okay.”

It may not seem like a huge deal—just a matter of poor wording. But in this time when the Americans with Disabilities Act is celebrating its twenty-fifth anniversary, we don’t need to be going backwards. Remember, it was the ADA that ushered in the era of person-centered language. So we talk about a man with schizophrenia rather than calling him a schizophrenic. We talk about a woman who can’t walk instead of calling her a cripple. And we talk about a child with ADHD rather than calling him mentally disabled. Or at the very worst, we call him a child with a disability.

It shouldn’t be rocket science at this point in our history, and yet here we are. We’re still using hurtful, discriminatory words. Words that justify abuse, fear, and marginalization.

ADHD Hall of Fame.

But that’s not all. Terms like “mentally disabled” give the impression that the kids are slow learners or are academic underachievers. It puts them in a category of “less than,” when there is absolutely no evidence in the article that this is the case. For all we know, these kids could be total freaking geniuses who happen to have ADHD. It’s not uncommon, after all for this combination to occur.

Here, for instance, is a list of some well-known, very successful people who also have ADHD:

  • Virgin Airlines CEO Richard Branson
  • Quarterback Terry Bradshaw
  • Musician Justin Timberlake
  • Pulitzer Prize Winning Journalist Katherine Ellison
  • Comedian Whoopi Goldberg
  • Actress Michelle Rodriguez

Would you call any of them “mentally disabled”?

Words from the Unwise.

It’s possible that the editor who created this headline thought the article would get more views if he or she used a provocative title. Or maybe the editor was trying to allude to the recent police brutality stories. But it was a very poor choice of words. It’s deeply offensive, and it did a huge disservice, both to the story and more important, to the kids.

But hey, I guess we’re making some progress. At least the headline didn’t call the kids retarded.