"Oh, That's Just The Autism"

DS was a happy, gentle, high functioning Autistic toddler. Since there was no delay in when he began speaking, DS's needs were effectively communicated. As such, he was immersed, like any child, in the bliss of early childhood. At the time I worked in childcare. DS being my only child, I routinely spoke of how comparatively high maintenance were the regular kids I cared for at work. I often heard myself say things like, "I'll take my Autistic child any day" and that, "regular kids are over-rated", in a LOL, "isn't this ironic?" sort of way.

All this changed when DS turned four and the regressions started. Upon being delivered to me in carpool line one day the teacher said, "He was a little aggressive today" to which I replied, "that's strange, he's never, ever aggressive." And so began a deterioration of basic functioning skills that lasted three years.

It began with head-banging: into walls, floors, filing cabinets, or whatever hard surface was nearby. Although this eventually subsided, the memory of seeing my child bash his head until it bruised won't. We hadn't seen the last of self-injurious behavior though, as he began daily to bite himself up and down his arms and legs. Some days these had the appearance of one long, continuous bruise in the shape of teethmarks.

Others were often the target of DS's aggressive outbursts. His father routinely went to work with gauges and bite marks on his face. I was dragged by my hair and bitten on the head or arms dozens of times per day. A constant panic was upon me, because in those moments I didn't see a seven year old I could control, I saw DS 10 years older and 100 pounds heavier, at risk for institutionalization were he to outlive his father and me.

DS tried to give warnings, as he'd yell, "Humpty Dumpty!" before he'd harm himself or another. I puzzled over his meaning for months until it occurred to me that he was saying that his head felt split open, like Humpty Dumpty's.

At each visit for two years I mentioned DS's extreme behaviors to the pediatricians. Their replies were always the same:, "Oh, that's just the Autism. There's not much you can do about that." So, all this time my husband and I watched or son slip further and further into aggression and repetitive obsessions believing that this is just how it is with Autism. What happened to our healthy, happy boy, I asked myself in anguish every day? His development had completely flattened and he reverted back to needing diapers, this child who had been toilet trained since three years of age.

By the fall of 2008 DS's behavior therapist was convinced he had a seizure disorder. She'd seen such behaviors appear out of the blue in other Autistic clients only to have EEGs later reveal seizure activity. I immediately knew at the gut level, she was right. After all, this might explain why DS seemed to feel such remorse after harming another. I recalled how often he'd pull me by the hair, then look me in the eyes, startled. He'd then hug me only to snap into aggression seconds later. This cycle could go on for hours unless I physically removed myself from the room. Then I'd sit on the other side of a door listening to DS howling in pain, longing to go in and comfort him. When I could bear it no longer I did just that, which is why I was often missing clumps of hair or had bite marks on my arms.

Sure enough, DS had the Electrodes on his head for one hour and the neurologist knew that my son was seizing 24 hours a day, in one part of his brain or another, called Multi-Focal Seizures. Relief settled in as I realized there could finally be help for DS. And yet, I was plagued by nagging thoughts. Why was his pediatrician unable to recognize DS needed a neurology consult?
Why was it two years before DS had an EEG and why did this come only at my request? Knowing that untreated, long-term seizures can cause brain damage I am left to worry if this has happened to my child. Is this why his development stalled for three years, I wonder? All I can do is guess.

I couldn't seem to let this go, so I asked his doctor why he didn't know sooner that my child needed to see a neurologist? Rather than giving excuses or getting defensive he winced, as if pained. I genuinely felt bad for him. None of us is perfect and we all make mistakes at our jobs, but for doctors these can carry a particularly high burden.

People have asked me if we are going to sue the doctor. No, we aren't going to sue that doctor. He didn't miss DS's condition because he is a negligent doctor, far from it. Rather, it was missed because he, like many other pediatricians in this country, know little about the how Autism can uniquely manifest in individuals. They are hardly to blame for his, though, since in most states Autism is not covered by insurance. Since Autism isn't covered doctors do not treat this bio-medical condition. If doctors aren't treating Autism how are they going to know that 30% of all people with that condition develop seizures and that often a tell tale sign of this is aggression? Instead, every nuance, behavior, or co-morbid medical condition gets the standard, "Oh, that's just the Autism" treatment, as the children, many non-verbal, are left to suffer with treatable conditions. There is no doubt in my mind that were Autism covered by insurance my son's seizure disorder would have been diagnosed three years ago - and that's a damn shame.

I believe people can get through almost any circumstance, even the tremendously difficult, if we can find meaning therein. So, the way I see it I can sit around, stewing in anger at the system, and speculate whether my child is brain damaged, all the while doing nothing that ultimately helps the situation - or, I can use this experience to educate other parents of Autistic children and doctors on how multi-focal seizures can present in individuals with Autism so treatment can begin immediately. Please feel free to contact me for more information at: autismmomrising@yahoo.com

I am delighted to report that after being put on Depakote and Risperdal DS has done a 180. Within a matter of weeks of being on the Risperdal he has emerged a social, verbal, and gentle child. With his development no longer stalled, I feel like the mother of a newborn baby marveling everyday at the growth and changes I witness in my child.