By Alexandra H. Solomon, PhD
Carrying the Hope, Part 1
Autism Spectrum Disorders: A report from the trenches
“Mom, you have to come and look at my poop!” Brian yells, running back into the office where Fran, his therapist, and I are patiently awaiting his return. His blue eyes are shining, he grins from ear to ear. He gestures to me (“come here!”) and then runs and grabs my hand. When I arrive at the potty, I glance at the specimen and then at Brian. His eyes are glued to me, anticipating my reaction. I smile, he laughs and spreads his arms wide, “it’s the longest snake ever!”
Such a moment might not strike everyone as so wonderful, but to me it is utterly amazing—and on so many levels. When he was 26 months old, Brian—now six–was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), which is an Autism Spectrum Disorder (ASD) falling somewhere between Autism and Asperger’s Disorder. Although even then he was considered “high-functioning,” he was dealing with some pretty significant problems for such a little guy. He had painfully sensitive ears (auditory hypersensitivity), no interest in other kids, aggressive behavior toward himself and others, scripted language, limited play skills, minimal social referencing, chronic diaper rashes, and continual gastro-intestinal problems, vacillating between constipation and diarrhea.
Now, at six and a half, thanks to intensive early intervention that was truly biopsychosocial in nature, Brian is making great strides. His current diagnosis is Asperger’s Disorder, rather than a PDD-NOS diagnosis. Also, not only have his physical/medical problems improved dramatically, but he is now competent enough at relationship skills to want to show me something he made, to figure out how to get me to come see it, to wait for my reaction, to celebrate with me, and summarize the whole event with a declarative statement.
When Brian asked me to come and look at his poop, he was not trying to get me to do something for him or make something happen. He wanted me to share an experience with him purely to share it. He also used gesture, engaging in non-verbal communication both receptively and expressively, which even six months earlier he simply could not do. This level of social referencing (defined as the ability to read, recognize, interpret, and respond to others’ facial expressions and tones of voice), coordination, and experience-sharing is extraordinarily difficult for a child with an ASD. Odd as it may sound to those unfamiliar with Austism Spectrum Disorder kids, what Brian did is a very, very big deal.
Mommy instinct: Something is not right
Brian’s first year of life was unremarkable—marvelous to his mom and dad, of course, yet unremarkable. He met all of his early milestones on the late side of normal and was social and sweet. At his 15-month well-child visit to the pediatrician, he received a clean bill of health and (I now believe) a fateful combination of two vaccinations— the measles, mumps, and rubella (MMR) shot and a flu vaccine. After the vaccinations, he spent the next three months sick more often than he was well. He battled bout after bout of diarrhea and became extra-sensitive to sound. He seemed tense a lot of the time and preferred repetitive solo play—pulling the books off his shelf and “reading” through them over and over in the same way. He also started to pull hair—my hair as well as the hair of the moms and kids at music class. He didn’t seem angry when he did it, just tense.
However, by 18 months, he could count to 100, knew all of his letters, and was beginning to do phonics (“Brian, what letter does ‘lavender’ start with?”). Nonetheless, at his 18-month visit, I asked his doctor how I would know if he had Autism. She said, “Does he point?” I said, “Yes.” She said, “He doesn’t have Autism.” I was relieved.
As I look back on this interaction, I realize how much the doctor really missed the mark with her cursory screening attempt. Brian did point (“Where’s the cow?” I would ask, and he would obligingly point at the cow in the picture), but he was not demonstrating joint attention in an age-appropriate way. Joint attention, a readily mastered milestone for a neurotypical child, means that the child looks at something—a balloon that has captured his interest, for example—then at mom to make sure she sees it, then back at the balloon. This attempt to engage with his mother in joint attention¬—hers and his together–is lacking in a child with ASD, and it is an important diagnostic indicator.
At Brian’s two-year-old visit, I expressed clear concern. Brian hated being around other children, he was self-injurious when frustrated (biting himself and sticking his fingers down his throat), his hearing was painfully sensitive, and he was crazy-good at math (at that point he could identify any three digit number, and he was beginning to add). I didn’t consciously know what to call this, but the combination frightened me. The doctor simply told me that he was a math genius and that I needed to become a better disciplinarian. “Everyone has quirks,” she said breezily.
There’s a name for it
After another week of comparing my son to similarly situated children and feeling with every comparison that something just wasn’t right, I called my pediatrician again. She told me that she had actually been thinking about Brian too and that we ought to seek an occupational therapy evaluation in order to rule out a “Sensory Integration Disorder.” I had never heard of this, and it did not appear anywhere in my DSM, but we went ahead with the evaluation at a local clinic.
The occupational therapist decided that yes, in fact, Brian suffered from, “auditory hypersensitivity, low muscle tone, motor planning delays, and vestibular and proprioceptive hyposensitivity [low responsiveness] ” The vestibular system, located in the inner ear, controls head and body movement, balance, and posture and also influences other sensory systems. The proprioceptive system refers to information from the joints, muscles, tendons and ligaments telling you where your body is located in space. According to the occupational therapist, Brian attempted to make up for his under-responsive vestibular system by seeking out swinging, jumping, and sliding, but would become overwhelmed by the stimulation and then upset. He attempted to compensate for his under-responsive proprioceptive system by seeking intense experiences of physical contact, squeezing or being squeezed, jumping, crashing, and pushing (usually other kids!). In short, there were multiple ways in which his sensory system was skewed, resulting in anxiety and behavior problems. The recommendation was for two hours a week of occupational therapy at the clinic. We were sad and a bit confused, but we started the therapy as instructed.
Still seeking more information, I reached out to a colleague of mine, a psychologist, who specializes in working with children, and she recommended that we seek a full neuropsychological evaluation in order to check “all of Brian’s lines of development.” OK. We headed to a neuropsychologist at a well-known clinic, specializing in neurobehavioral problems. On the way home from the first session, which included some assessment of Brian and some interviewing of me, I began to panic as I replayed her questions in my mind: Does Brian have language anomalies, like reversing his pronouns? Does Brian use gestures like nodding and shaking his head? Does Brian spontaneously direct your attention in order to show interest? I knew that I was answering nearly all of her questions “the wrong way,” indicating a less-on-track rather than more-on-track child. I got home and opened my DSM to the chapter I feared the most, the chapter on Pervasive Disorders of Childhood. I called my husband sobbing, “This neuropsychologist thinks it’s autism. Holy shit, she thinks it’s autism!”
Indeed, on November 9, six days after the birth of our second child, Courtney, we were told that Brian met the criteria for a “provisional diagnosis of PDD-NOS.” Reality sunk in only slowly over days and weeks. I hear this frequently from parents of children like Brian. The mind and the soul cannot take in all of the meanings, feelings, and unknowns at once–it is too disorienting.
Those early months post-diagnosis are an existential mess for all parents, and they tormented me. As we started to tell family and friends, no reaction was the right reaction. I remember my mom’s cheerful voice telling me, “He is FINE! He is more than fine. The only problem Brian has is that he’s too smart for his own good!” But, we had just been told that he was not fine, and her reaction hurt me–it felt like an invalidation of the struggles we were up against. On the other hand, I remember my step-mother’s heavy voice telling me, “My heart is breaking for you. I am just so sorry for you.” Her reaction hurt me too. Her heart should not be broken—this was not a death sentence. We’ll get him what he needs to catch up, I told myself stoutly, and he’ll be “indistinguishable from his peers” by kindergarten (the often repeated goal of early intervention).
True, Brian was still the same boy he had been before the diagnosis, and I resisted looking at him differently. Yet, he also was not the same boy. He was now a boy who could not and should not be expected to do what other children do. I could feel the ways in which the diagnosis, the label, was becoming a lens through which I experienced him. Autism was beginning to infiltrate everything.
*We had always laughed about how Brian’s transitional objects were never stuffed animals or blankies. Related to his deep and abiding love of numbers, his favorite form of comfort always came in the form of an “8”—an 8 of clubs from a deck of cards was the best, but sometimes a magnetic refrigerator 8 or even a hair elastic twisted in half could do the trick. Indulging the love of 8s was now tantamount to reinforcing the autism, but not allowing him to seek comfort with an 8 felt cruel. I was stuck. The 8 of clubs now seemed symptomatic of the autism because one of the DSM criteria is about “restricted interests” for example being “highly attached to some inanimate object.”*
I also had become my own worst fear– the mother of a child with special needs. I remember, long before I became a mother, seeing the mothers of disabled children and pitying them—how shameful for me to admit. And, it was autism I feared the most. The little that I did learn in graduate school about it terrified me. How could I survive having a child who was not responsive, who could not give love? Of course, my stereotype of autism was skewed. I have never met a mother who described her child with autism as unable to give love. But, long before I faced autism, I feared it deeply.
Thankfully, there is just too much to do post-diagnosis to wallow for long in grief and anxiety. The neuropsychologist told us that there is a limited window of opportunity for effective early intervention and that in order to minimize the impact of Brian’s disability (I could not believe that I was hearing that word!), we would need to start therapy right away. She also told us that his young age, his ability to use language, and his apparently normal intelligence all worked in his favor. In a few years, she suspected, he would meet the criteria for an Asperger’s Disorder diagnosis: he would be high functioning, whatever that meant.
We wanted a crystal ball. We still do. Would he need special education? Would he make friends? Would he go to college? Would he live independently? The last question is still the most terrifying. I still cannot hold in my mind for more than a moment the image of my son living in a group home. He simply must “get better.” The neuropsychologist, of course, could not answer any of these questions. She could only tell us the list of services that he would need ASAP. Her initial recommendation was for individual developmental play therapy, a play therapy group, speech therapy, and occupational therapy. She had some ideas about which local clinics we could contact.
The next month was a blur of phone calls, initial appointments, sleepless nights with a newborn, and hours upon hours spent on the computer trying to understand this world we had just entered. The neuropsychologist had suggested that we limit our internet research as there was a lot of misinformation out there. That was the only recommendation that I did not and could not follow. I was glued to the internet and on a steep learning curve. The quest for information functioned on multiple levels. Doing it contained my anxiety and also gave me enough confidence to trust my instincts about providers, navigate the tricky shoals between contending treatment philosophies, and decide upon a way to proceed that made sense for me.
To be continued………
Please look for our next installment when we learn about the therapies that the Solomons selected, how Brian responded and how the family has been doing.
About the author
Dr. Alexandra H. Solomon is a licensed clinical psychologist and a clinical lecturer in Northwestern University’s Masters of Science in Marital and Family Therapy program. She received her PhD in Counseling Psychology from Northwestern University, as well as a graduate certificate in Gender Studies. Dr. Solomon has developed expertise in the areas of couples, families with special needs children and group relations/ dynamics. She has published a number of articles, most recently about parenting children with Autism Spectrum Disorders (ASDs). She has presented nationally on this subject and consults to the media on topics related to marriage and family. Dr. Solomon is a member of the American Psychological Association (APA) and the American Family Therapy Academy (AFTA). In her free time, Ali can be found enjoying hip hop dance, running, biking, swimming and competing in the occasional triathalon. Contact her at firstname.lastname@example.org