"Good Days. Bad Days."
An autism diagnosis is never easy on the parents, but the author found it a starting point in the journey away from uncertainty
It starts with the staring. Eyes all around us, questioning, disapproving. Followed by whispering hisses of ignorance. We catch words like “brat” or “spoiled.” Occasionally worse. But most of our attention is focused on our 5-year-old son, Dean, who’s in the middle of a total meltdown.
Friday-night dinner and a movie ought to be so simple, a treat for my wife and our three children. I see families all around us eating, laughing and enjoying each other’s company. Normal families. But I remind myself—as we pack our food in to-go containers and make a hasty exit—our family is not normal. Dean has autism.
As the eyes follow us all the way out, we’re unable to stop his crying. If it continues in the car, he’ll become nauseous and vomit on the way home.
Was it the restaurant noise? The bright lights? The long wait? Perhaps all of those things, or even something that happened hours earlier. We don’t know, and he can’t tell us. Any event at any time could spark a meltdown.
Most autistic children have extreme difficulty interpreting or expressing their emotions. What might look like an old-fashioned temper tantrum is actually a child in crisis. The child’s thoughts are there, but the brain simply won’t cooperate. The words won’t come out. The result is the autistic equivalent of a panic attack.
The term “autism” actually refers to a family of developmental disorders called pervasive developmental disorders or autism-spectrum disorders. According to the American Medical Association and the Center for Disease Control, there’s no known cause—or cure—for autism.
San Diego social worker Raquel Zaragoza works with more than 80 families coping with developmental disorders. “Often, I see parents who are in denial of how severe their child’s diagnosis actually is,” says Zaragoza. “One parent is being very realistic [about the child’s limitations] while the other is clearly in denial.” When Dean first received a diagnosis of autism, I cried. I held him and cried. The unknown was just as overwhelming as what I thought I already knew. The easy thought that I could one day teach Dean how to throw a tight spiral was gone. Every single fantasy I’d dared to dream for my son was taken with one simple sentence: “Your son has autism.”
I felt cheated. I was infected with guilt. Silently I wondered: Is this my fault? Somewhere, swirling around in all that sorrow, was the belief that the doctors were wrong. The empty words “He’ll get better” played over and over in my mind. I was in denial, and it made me blind to just how badly my son was struggling.
After all, when your child is struggling, you’re struggling. Not only does the child have autism, the whole family has autism. Every family member must adapt to survive life with autism.
Parents living with autism will simply say, “Good days. Bad days,” allowing themselves permission to take a do-over. We’re fighting something so mysterious that, for the most part, we often know more than our doctors.
Generally, the symptoms of autism are a marked lack of eye contact, lack of verbal communication and a tendency to avoid socialization. Autism mysteriously affects boys at a rate of three to one over girls. Unlike most illnesses or diseases, spectrum disorders are uniquely fingerprinted to the individual. In other words, no two people with autism have the same symptoms to the same degree. The current birthrate of children diagnosed with a developmental spectrum disorder is one in 150. If you don’t already know someone living with autism, you soon will.
Every day you pray for any sign of improvement. You see the struggle in your child’s eyes. Frustration builds as he fights through a series of neurological tics and barks instead of the words he so desperately wants to use. Something as simple as “Good morning, Dad” is cause for celebration.
According to Zaragoza, autism’s pressures end many marriages. Constant meltdowns, outbursts and added medical costs are often too much for one or both parents to take. Throw denial on top of that, and you have an emotional time bomb. Domestic violence is a problem Zaragoza sees all too frequently.
Soon my marriage suffered. My wife and I couldn’t agree on the simplest things. Communication is impossible when what one needs to say is too painful to express.
The low point came when depression set deeply into my life. I was angry and resentful of the hand I’d been dealt. I yelled at those I loved for no good reason. I hated the autism that had taken the joy out of my life.
Fortunately for my family, while I wandered around in a fog, my wife, Wendie, took over. She knew in her bones there was more going on with Dean than some “late-bloomer” phase, as our HMO pediatrician had supposed. Wendie made it her mission to get answers. She challenged HMO workers who offered only insurance-provider doubletalk. She refused to take “no” for an answer. She requested a different doctor, one who’d actually listen. Eventually, we got one.
The word “autism” was first introduced into our lives when we met with the new doctor. She gave us referrals: the golden key that opened the door to neurologists, psychiatrists, psychologists and CAT scans. The works. All in a concerted effort to diagnose our son’s problem.
Not long after we received Dean’s diagnosis, we met Frank Dang, a health professional who helps families find support services. We learned that Dang’s son also lives with autism. We were told his son Urian was 21, going to college and working part-time. College? A job? These were hints of the so-called normal life we’d once anticipated for our son.
Dang reassured us that autism is not degenerative. As long as you continue to work and build your child’s strengths, they can only grow. That’s not to say things get easier. Ask him if it’s more difficult to raise a child with autism than to support a 25-year-old man with autism, and Dang will take a long pause before saying, “It’s the same.”
But in his usual positive manner, he quickly adds, “We still have to teach Urian every day. No matter how many services or teachers there are, no one can teach like a parent because of the time involved.” Dang goes on to say, “Parents don’t need a medical background to cope. They have the skills as parents. They need to find what external motivation helps their child.” After our initial visit with Dang, we felt our first sparks of hope. Dean’s diagnosis may have felt like a kick in the guts, but it was a place to start. Before the diagnosis, there was only uncertainty.
Soon we were able to get Dean into a preschool class at Whittier Educational Center in Clairemont. His first days away from home were pretty bad, though his teachers remained positive. They were so amazingly caring and patient, while my wife and I were wrecks.
On his first day, the afternoon school bus was very late. We panicked. When it finally pulled up, the driver explained there had been a traffic accident on the freeway. Dean was crying as I walked him off the bus.
The poor kid took one look at me and threw up. His educational journey had begun.
Like most autistics, Dean is a visual learner. He relates through pictures. With the help of some fine therapists and educators, we experienced the magic of something called the Picture Exchange Communication System, or P.E.C.S.
P.E.C.S. allowed Dean to assemble a series of pictures in a sort of sentence that finally opened up ways for him to express his needs. Bits of relevant speech soon followed. My 5-year-old son was finally starting to speak and relate to people around him. At last, we could reach him. More importantly, he could reach back.
Dean learned new words daily. A personality that had been waiting to blossom grew by the minute. The more Dean learned, the more we learned from him. I got to know my son. It took five years, but I finally bonded with my son. The hatred that I’d harbored for his autism broke away. I began to accept my son for who he is and not what he has. The love I’d always had for him led to admiration for my brave little boy.
Dean recently turned 10. I’m lucky to have such a wonderful boy. He’s a pretty talented little artist. He has a great sense of humor and laughs without reservation. In short, Dean is a joy.
As a father living with autism, I often feel powerless. The fact that there is no cure for my son’s disorder weighs heavily on our future. There are financial worries and concerns for long-term care. There is the sad fact that, one day, my wife and I will be gone, and our autistic son might be alone.
With all of that in mind, the one thing we can do for him now is protect his happiness. We know there are going to be good days and bad days. But isn’t everything like that? You do the best you can with what you’ve got. Aren’t hard work and diligence the keys to almost everything?
So my son can’t throw a tight spiral yet. He’s a great boy. He makes me laugh.
I love him, autism and all. And if the day takes a turn, we take a step back and recite the autistic parents’ mantra, “Good days. Bad days.”
Maybe we’re normal after all . . .