Puberty and Other Autism Suspicions Confirmed

It turns out that my autistic twelve-year-old son is in fact in puberty. This obvious fact was confirmed today by a specialist at the Adolescent Medicine Clinic of Children’s Hospital of Pittsburgh. The doctor held his testicles in her gloved hand and proudly announced, “Stage three.” A google search would have told me the same thing, or the dark nest of hair in the region she was examining hesitantly while he tried to shove her away. I still bathe him every day and wipe his ass after he goes to the bathroom. I am well aware of what’s going on down there. But if I somehow managed to miss those clues, maybe his seemingly constant erection at every inopportune moment for the last year might have indicated his maturation. I might have also guessed when he removed the mounted head of the trophy buck from our living room wall, straddled it and began moving back and forth surprisingly rhythmically. It was the furthest thing from funny at the time, but by that evening I admit to sending my sister a text message with only the deer and one of the choices of crying emoji’s, two pictures I never could have  imagined I would have cause to juxtapose.

            It also turns out that “puberty is difficult for these kiddos.” Kiddos is a default noun always spoken proudly and generally and only by professionals in the psychology or medical fields. Kiddos. It has become a way of speaking of a disability without naming it. You know which kind of kiddo you have, whether autistic or otherwise, when it is preceded by the word these. Regardless, puberty was among the facts I may have gathered from my own forensic evidence. The rage. The new OCD behaviors. The sudden and spontaneous weeping that sometimes goes on for over thirty minutes, during which he is completely inconsolable. These such episodes are precisely what led me to resume the painstaking search for a medication that might help him.

So when this doctor removes her thick, blue gloves, sanitizes her hands for the third time in seven minutes, and turns to ask me if I have ever heard of a group of medications called antipsychotics, which she pronounces like a foreign word, not proudly and confidently like she said kiddos, I nearly laugh out loud. She is not defeated by my undoubtedly frustrated expression. She suggests the Autism Center at Children’s Hospital. I tell her I have been there. Maybe a support group? Been there too. Perhaps a counselor for me? I stand and gather our things to leave as she hands me the printed Summary of Today’s Visit and says she does not need to see us back. Had it not been two hours after our scheduled appointment, negative thirty minutes from rush-hour traffic downtown, two weeks after I had desperately called to schedule the appointment on the advice of our psychiatrist, six hours after I had a lifelong mole removed from the top of my lip, which was now swollen and throbbing  from Thomas’s attempts to grab me by the face in the waiting room because his patience had expired, and three hundred eighty two days after the hell of this now-confirmed puberty had started, I might have been ever so slightly more tolerant of her dismissive nature, her sidelong glance at my incision, her question, should I ask about that? and her condescending nature, complete with the I-just-want-to-go-home implication, that I’ve-seen-it-all-before smile. None of this stopped her from giving me the final piece of parting advice I had already received at the Infectious Disease Clinic, the Ear Nose and Throat Office, the Departments of Neurology, Endocrinology, and Gastroenterology, the psychiatrist, the psychologist and the dermatologist, and most recently, the psychotherapist who performed a gene swab test to help determine what medications might be best suited for this poor kiddo, who had already spent five years titrating on then off every antidepressant that ended up in the Red/No category once the swab results finally came back, a full five years after I crawled down the rabbit hole of psychotropic medications that are rumored to help some of these kiddos.

            And so today for the nine hundred and fifty first time in the ten years that I have been an unwilling participant in this mind-fucking, soul-bearing, futile game of trying to help my son and to figure out what is wrong with him beyond simply Autism Spectrum Disorder, a wastebasket category for every behavior problem known to man, I declare that I am over it. I am over Autism.  

No, I do not give up on my kiddo. And I have not given in, but I think it is time to search elsewhere for an answer. Admittedly, I do not know where that somewhere is, but I will gladly explore the slightest possibility of help just as rigorously as I have explored every option that has been thrown my way as I was passed hand to hand like a Thanksgiving platter around the bureaucratic table of those deemed specialists and professionals. Granted, some of them are well-meaning and well-intentioned and just as concerned as I am about this mystery, but that stands as little comfort when I look at my empty hands. When I stand in the middle of the tornado that is my living room as Thomas continues to throw anything he can get his hands on and think, This is my life.

            Something happened to my son. Something long after his diagnosis at age 2, somewhere around what I cannot believe is now three years ago, something that caused enough aggression to have him “alternatively placed” at a school an hour away from our home with other kiddos who, during our initial visit to the school, seemed so much more severe than Thomas. Something that has changed his entire personality. This goes beyond autism. This is something that if it happened to a neuro-typical child, would have been examined extensively and resolved by now. Someone would have brought in someone like Dr. House to solve the mystery.

            My heavy grief springs up like an unwelcomed erection just as the resident touches my shoulder as if in apology for the doctor’s arrogance. I am again consumed by sorrow and so much emotion I cannot contain it. This poor, pregnant resident who had the misfortune of seeing the crazy-haired woman with the disfigured face and her autistic son as the penultimate case of the day. My meltdown will remain unparalleled. I say that both literally and relatively speaking, giving this exam room breakdown its rightful place among those that have occurred between the walls of the many doctors’ offices, or in my car once I manage to escape.

Epic.

That’s what it shall be called from this point forward in my personal narrative of autism experiences.  There have been enough times I have successfully constructed a timeline of symptoms to whatever pair of eyes happened to be in front of us, darting back and forth between me and a computer, where notes are typed and stored for God only knows what reason because nothing ever comes of these visits. This is not one of them. This one will go down as a complete waste of time.

            I always end up back at home, alone with my insurmountable grief, licking my autism-inflicted wounds, my poor kiddo and I left to wait for the next appointment with a hope that is quickly going limp.