This is long, serious, and personal. It has nothing to do with writing or books and everything to do with real life. I’ll understand if you choose not to read it, but I hope you will.
There are a lot of people out there who don’t understand the autism spectrum. That’s okay. There are a lot of us living with it who have a dodgy grasp on it, as well. That’s part of the problem – it’s such a wiggly, amorphous concept that trying to fully understand it is a lot like trying to nail Jell-O to a tree.
|"Have fun with that."|
Still, we need to talk about it, because 1 in 88 children today are diagnosed as being on the autism spectrum, so not having some awareness of what “autism” means is a lot like not being aware that some people are born with red hair.
|"It's so... not brown!!!"|
So first, what’s with the spectrum? How come autism gets a spectrum? Shouldn’t a person either be autistic or not autistic? How can people who manage to function in society, hold down jobs, and have families claim to be autistic? How can those people possibly be facing the same challenge as Grandma Ruthie’s hairdresser’s son, who hasn’t spoken a word in twenty years? Does the spectrum just exist to give lazy people an excuse for blowing off important things? Or is it just doctors’ way of making autism fancier than other disorders?
|"Care for some champagne with your diagnosis, sir?"|
When you meet a severely autistic person, there is no question that their disorder is real. Human beings are quite capable in believing in a condition when there are physical manifestations that prove its validity. However, what many people do not understand is that autism is not a physical issue. Autism sits in the brain. It lives in the mind.
Now, I am in no way qualified to talk about severe autism and what that experience is like for the parents of severely autistic children. What I know, without question, is that it has to be an intensely difficult, exhausting, often discouraging, but sometimes miraculous experience. Non-verbal autistic people are blowing away audiences with their unexpected vocal talents, and through the tireless intervention of families, teachers, doctors, and friends, these people who could so easily be discounted and marginalized are having a profound impact on the people around them. Each of them can touch a person’s heart, even if they cannot tolerate being physically touched themselves. Each one of them can contribute to the world in their own unique way, whether on a large scale or small. They are not defective. They are not less. In so many ways, they are beyond the normal, and the world seen through their eyes is an awe-inspiring place. This is why it is so important for us to continue to build bridges of communication. We do not need to bring these people into our world – we need them to bring us into theirs.
I want to tell you about my son. I will call him Steve, since that would make him laugh. In order to talk about him, though, I first need to tell you a bit about me.
Mental illness seems to run in my family. Nothing exotic that involves drinking Kool-Aid or eating one's neighbors or anything, but it’s there. Along with a HUGE boatload of denial. When I was in high school, I told my parents that something was very wrong with me. They insisted that I was just “being dramatic” as teen-aged girls are wont to be. They were wrong.
I wound up struggling on my own with near-crippling clinical depression through the rest of high school, the entirety of college, and into my adulthood. The longer I went without the proper professional help, the worse my symptoms became. In my final year of school, my boyfriend was tying my shoes for me and delivering chapters of my thesis to my advisor on my behalf. I couldn’t have done it if you’d put a gun to my head – not even tying my own shoes. That was the year I finally got the help I so desperately needed, but anti-depressant drugs are tricky things, and again my boyfriend was there, peeling me off the ceiling when the doctors guessed wrong and reassuring me when I thought I would lose this battle for sanity.
I married him two months shy of my twenty-fourth birthday. My new husband had graduated college a whopping five days earlier. It was the late 1990s, and as many of our generation were discovering, the plentiful jobs we’d been promised were simply not there. I was working as a temp, though I was in a long-term assignment that soon afterward became a full time position. Neither of us knew what we wanted to be when we grew up, so when I discovered I was pregnant a year later, we found ourselves scrambling to define who we were as productive members of society. A mere twenty months after our wedding, Steve was born.
We were both thrilled and terrified. My husband had buried his own father just the day before the birth, and the entire family was emotionally wasted. I was shocked when it came time to leave the hospital, and the nurses just handed me this tiny, fragile human being and let us drive off with him. It was tempting to demand that they wait until a responsible adult showed up. Twenty-five hadn’t felt unbearably young until that moment.
As new parents do, we adjusted, learned, and second-guessed ourselves silly, and the years began to pass. Steve was in a nice daycare, my husband and I both had stable jobs, and my depression had receded to a whisper that was easy to ignore. And then the letter came.
It was from the director of Steve’s daycare. She advised us that Steve was no longer welcome to attend because his behavior made him “a danger to himself and others.” He was three years old.
Steve had had a meltdown, they told us. The children had been fighting over a popular toy, so the staff had removed it to a high shelf to resolve the matter. This had upset Steve more than anyone would have predicted, and he had lashed out, throwing his shoes and flailing around so much that he had knocked over a wooden bookcase. It had almost fallen on a child napping nearby.
We didn’t understand. Steve was sweet, kind, generous, articulate, and perceptive. The child they described was a monster. Our child – my baby – was a monster to them.
We found another daycare center. This one had more highly trained staff, and we kept them apprised while we began talking to child psychologists to try to understand Steve’s behavior. We thought it was our fault as parents, and that if a professional could just tell us how to fix it, Steve would be fine. But he wasn’t fine. He loved that daycare, but they weren’t equipped to handle him. One day, I was called to pick him up, and the director lowered the boom. Another rejection, except this time he was aware of it, and it hurt.
When I arrived at the center, I found him in the director’s office. He was in hysterics, crying over and over, “Help me, help me, Mommy. I can’t stop. I can’t stop.” My heart broke. It has been twelve years since that day, and I still cry when I think about it. My little boy was suffering, and I was failing him. I didn’t know what to do.
Neither did the specialists we consulted. We talked to everyone. We took him to the Cleveland Clinic for a battery of tests, including allergies, vision, hearing, and anything else they could think of. I paid his now full-time babysitter to drive with us to the All Kinds of Minds (now, Success in Mind) center in North Carolina to have him assessed by their team of specialists. We filled out more forms than I could have imagined, until my entire world was reduced to “strongly agree” and “somewhat disagree.” This went on for YEARS. It was not until he was in 3rd grade that he was diagnosed by a neurologist with ADHD, and the medications began.
The medicine helped, but not enough. Every year, the neurologist increased the dosage, looking to mask the symptoms and assuring me that I was being paranoid when I wondered if there wasn’t some other issue contributing to Steve’s abnormal behavior. When he was in 6th grade, the neurologist increased the dose again, and when I saw the pill, I wasn’t sure Steve was physically capable of swallowing something that size. I followed my instincts and didn't administer it.
We fired the neurologist. Steve’s new psychiatrist finally – after EIGHT YEARS of consultations and treatments – diagnosed him with high-functioning autism, which at the time was labeled Asperger’s. By continually increasing the dosage of his medication, the neurologist had actually put Steve at risk for heart disease. The psychiatrist also confirmed the ADHD diagnosis, and she added one more to the mix. Steve showed undeniable signs of anxiety disorder, and it was quite clear where that had come from.
6th grade was a nightmare. The public middle school assured us that they were equipped to work with Steve, but it soon became clear that this was a lie. His teachers continued to insist that he be responsible for tasks that he was not able to manage on his own. Rather than accommodating him or helping him, they began emailing me at work on an almost daily basis. They wouldn’t even speak to him directly to correct the behavior, instead choosing to report the infraction in real time to me at work. I just kept getting emails and phone calls and being summoned for meetings, in which they made it clear that these problems were a result of my failings as a parent. I should be making sure he did these things. Not them. Obviously, they could not be held accountable in the face of my flagrant inability to parent my child.
We now had a younger son – let’s call him Fred – who had started kindergarten that year. Because the Universe has a weird sense of humor, little Fred had also been kicked out of his daycare at age three and was diagnosed with ADHD. He would get over-stimulated and lash out, in one instance forcing the teachers to evacuate the classroom and restrain him to prevent any injuries to himself or his classmates. So I was now receiving emails and phone calls nearly every day from TWO schools. To say I was overwhelmed and desperate doesn’t even begin to cover it.
I worked in a law firm as a paralegal, and there was no way for me to continue working and parenting my boys. The longer I attempted to find a balance, the worse both areas of my life became. One day, I had a moment of real clarity, and I quit. I have been home for almost four years now. We eat a lot of ramen noodles.
One of the things we have always been aware of is Steve’s staggering intellect. This kid is flat-out brilliant. Any adult who sits down and speaks with him is completely blown away. There was no way I was going to let him fall through the cracks and waste all that beautiful potential and unique genius. I’ve kept talking to specialists, talking to him, and just being present. We found him a wonderful private school that boasted a one-of-a-kind integrated autism program, and he blossomed. After two years there, he was accepted to one of the most challenging private high schools in the area.
Today, Steve is a sophomore at that school. He is both thriving and struggling. We are beyond fortunate that this school understands that high-functioning autism isn’t just an excuse. The teachers and staff recognize the potential in him, and they bend and adjust to allow him to achieve. He is happy there.
Steve began having crippling anxiety attacks that made doing his homework impossible, and occasionally interfered with his performance in the classroom. At first, we attempted to help him with a mild anti-anxiety medication, but when he began to exhibit signs of clinical depression, I was on the phone looking for a therapist without hesitation. I knew what this meant. I knew the cliff’s edge he was peering over, and I would not let him fall.
We have learned a lot from his therapy sessions. In order to make it a safe place for him to speak freely, I am not in the session with him, and his therapist does not share anything Steve tells him without Steve’s permission. One revelation was that Steve’s mind works entirely by association. This explains his flair for maths and languages. It was the source of his academic strength.
It was also his weakness. Steve’s memory associated homework with the trauma he experienced during that nightmare 6th grade year, and the only way to correct that would be to slowly replace the association with more positive memories. We’re still working on that.
I am attempting to ignore the boiling rage at what that school did to my son. They took a child who already faced too many obstacles, and they broke him. Yep. Pure rage.
The psychologist spoke in awed terms about Steve’s intelligence and inventiveness. I suppose to the parent of a neuro-typical child it would be a source of pride. The level of brilliance the psychologist described to me would grind every PTA parent’s honor student bumper sticker to dust. And of course I am proud of everything that Steve has accomplished and the man he is becoming, but one fact remains. He is still dangerously depressed.
So this is my life. I work from home as an editor and author, and I advocate for my children. Fred needs speech therapy and is refusing to complete assigned class work. I’m emailing teachers and consulting with intervention specialists and trying to get him an orthodontist. Steve has to take anti-anxiety medication to even face making a list of his nightly homework, and I help keep the tasks small and manageable by parceling it out to him in tiny pieces, concealing the overwhelming whole. He was sent home yesterday at first period because his teacher saw he was too depressed to face the day. Other parents get calls from the school nurse. I get calls from the school counselor. I take a deep breath and call the psychologist and ask for an extra session. I call the psychiatrist to discuss adjusting his medication. I email the school to let them know how Steve’s treatment is changing and what new techniques we are trying.
This is the reality of autism. My son is on the high-functioning end of the spectrum. Unless you’re looking for it, it’s hard to notice the signs in his appearance or behavior. Like the depression that I know will never completely leave me, my child has an invisible burden, but he carries it with assurance and patience. He knows I understand, and he knows I’ve got his back. He also knows that not everyone will believe that his autism is real. He knows that some people will tell him to “just cheer up” and “stop freaking out.”
All I can do is keep the lines of communication open. I listen, support, and encourage. I am honest with him. Watching me accept and take pride in the weird, quirky person I am has taught him to do the same. He told me one day that he felt sorry for normal people who didn’t have a cool family like ours. I told him to be patient with them, because they didn’t see all the amazing things we could, and that made it hard for them to understand our world. I taught him that no one is better than anyone else, and that we’re all on a journey to find the best in ourselves. And then he told me the most terrifying thing of all:
The day I quit my job to stay home and help him and his brother was the day he stopped contemplating suicide as a solution to his problems, because now Mom was on his side.
I never knew, and that makes my heart go cold. My number one fear – the thing that can tear me apart with just a thought – is losing my children. To lose him to other people’s ignorance, vanity, and misplaced sense of discipline would kill the person I am and shatter the person I strive to be.
So that’s why I am writing all of this out and posting it for the world to see (or at least the ten people who read my blog). This is why autism awareness is critical. No one is asking you to understand it. No one is asking you to understand diabetes, depression, bipolar disorder, or any other of the scores of invisible hurdles that so many children and adults must overcome.
Just be aware that the reality of living with these challenges is more than you can imagine. Be aware that telling a parent who has struggled for years to keep their child whole that they’re doing it wrong is an insult and cruel. Be aware that, even though you can’t see physical symptoms, the pain is still very real, and the risk of fatality is realer still.
That’s all you need to do. If you can’t understand, at least be aware.
Thank you for reading.