'Good days. Bad days.'

A father’s journey with Autism

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It starts with the staring. The eyes all around us. Questioning. Disapproving. Then the whispering. Buzzing hisses of ignorance. We catch a few words cutting through the din. Words like “spoiled” or “brat” and occasionally worse. But most of our attention is focused on our 5-year-old son, Dean, who is in the middle of a total meltdown.

Dinner and a movie. That should be so simple. And above all, it should be a relaxing, enjoyable treat for my wife and our three children at the end of a long week. I see families all around us who are eating and laughing as they enjoy each other’s company. A normal family Friday night. But I have to remind myself, as the five of us pack our food in to-go containers, pay the bill, gather our belongings and make a hasty exit, that our family is not normal. Our son Dean has autism.

Dean is red-eyed and whining. As we lead him out of the restaurant, the eyes follow us. Once in the car, if we’re unable to stop his crying, it will lead to a coughing fit, followed by an intense bout of nausea. If the meltdown continues further, he will vomit in the car on the way home. So much for our family night out.

Anything could’ve set off this one. That’s a big part of the problem. He can't tell us and we don’t know. Was it the restaurant noise? The bright lights? The long wait? It could’ve been any of those things or even something that happened hours earlier. Any deviation from the norm at any given time could be the spark for a meltdown.

Even Disneyland proved to be too much for our Mickey-loving son. I felt pretty bad for the poor kid earning minimum wage who had to clean up vomit in Mickey Mouse’s Toontown residence. I felt bad for my wife and I, who promised our kids a great day. But I felt worse for my son, who just wanted to meet his idol and couldn’t keep it together.

Most children with autism have extreme difficulty interpreting or expressing their emotions. So what might look like a good, old-fashioned temper tantrum is actually a child in crisis. The words are there, the thoughts are there, but the brain simply will not cooperate. Take a moment to imagine how horrifying that must be. Often, the result is the autistic equivalent of a panic attack, commonly known among parents as a meltdown.

The term “autism” actually refers to a large family of developmental disorders called pervasive developmental disorders or autism-spectrum disorders. While the disorders have little to do with intelligence, the common stereotype is that people with autism are stupid or even retarded. Like most stereotypes, this is less than accurate.

Generally the symptoms of autism are a marked lack of eye contact, lack of verbal communication and a tendency to avoid any socialization. It mysteriously affects boys at a rate of three to one over girls. Unlike most illnesses or diseases, autistic symptoms are uniquely fingerprinted to the individual. In other words, no two people with autism have the same symptoms to the same degree.

While there are many theories about what causes autism, to examine any of them here would not change the fact that no one — from the American Medical Association to the Center for Disease Control — has scientifically validated any of those theories.

What they do agree on is the current birthrate of children being diagnosed with a developmental spectrum disorder is one in 150. With numbers like that, the definition of “normal family” is now being challenged. Chances are, if you don’t already know someone living with autism, you soon will.

At this time there is no known cause or cure for autism. A few celebrity book hawkers claim they’ve found a “cure” through careful dietary restrictions, internal “cleansing” and even homeopathic remedies. But again, the medical and scientific community cannot agree with those claims. And regardless of anyone touting a cure, the truth is that this is a “fingerprint” disorder. What works for one or some may not work for others, an unfortunate fact that’s often conveniently overlooked by anyone trying to sell a miracle cure.

What everyone seems to agree on is that the only thing that consistently works is regimented therapy at a young age. The earlier the diagnosis, the better, in order to start the various therapies: speech therapy, occupational therapy, physical therapy, socialization training, self-help skills, life skills and on and on.

San Diego Social worker Raquel Zaragoza works with about 80 local families coping with some form of developmental disorder. She sees firsthand the struggles of families living with autism. Parental denial is something she commonly deals with.

“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 while the other is clearly in denial.”

When I first heard that Dean had been given a diagnosis of autism, I cried. I held him and just cried. The absolute unknown was just as overwhelming as what I thought I already knew. The easy thought of one day playing catch with my young son and teaching him how to throw a tight spiral was gone. Every single fantasy that I’d dared to dream for my son was taken with one simple sentence: “Your son has autism.”

I felt cheated and angry. I was confused and infected with guilt. What had I done, taken, used, abused or forsaken that had affected my son? Is this my fault? It was maddening.

And somewhere, swirling around in all that confusion and pain, was the faintest thought that the doctors, the specialists, the neurologists and the psychologists were wrong. They all had to be wrong. The empty words, “He’ll get better” played on an endless loop in my mind. I was in denial. Eventually that denial came crashing in on me. It made me blind to just how badly my son was struggling even with the simplest tasks.

After all, who wants to see their child struggle? Who doesn’t want to see their child grow into a normal, confident, strong person? And to be even more direct, selfish even: When your child is struggling, you are struggling. Shadowing every misstep. Sharing every bad day. Every tribulation. It’s not just our son who has autism. We all have autism. My wife, my two daughters and I. All of us are trying to adapt and survive as a family living with autism.

When a meltdown or a setback occurs, most parents living with Autism simply say, “Good days. Bad Days.” It’s just a way to cope with the mystery of autism.

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