I was first introduced to the concept of one person having multiple diagnoses during my early years in training to become a special education teacher. As part of my early training I volunteered at a psychiatric hospital on a floor where they treated children with multiple disabilities. Some of the children’s charts were so huge and heavy that they were nearly impossible to carry. The diagnoses were long and varied and included psychiatric and developmental disorders, medical conditions, as well as physical disabilities. I was amazed that children as young as five or six could have more labels than the number of years they were alive.
My exposure to children having multiple diagnoses continued with my classroom internships where one child could have cerebral palsy, mental retardation, and be vision impaired and another could have autism, intermittent explosive disorder and albinism. And it was very possible that these children with vastly different diagnoses be in the same classroom.
In my experience, it seemed more the norm than not for a child to have multiple diagnoses rather than a single one. Take the diagnosis of ADHD for example. A child having ADHD may have one or more co-morbid conditions or disorders including depression, anxiety disorder, conduct disorder, learning disabilities, bipolar disorder, oppositional defiant disorder,and sleep disorders to name a few.
It was often a challenge for me as a budding teacher to know which diagnosis was the most important one to pay attention to as far as individualizing therapy or lessons to meet that child’s needs. It was common practice to read the child’s chart prior to meeting them. But over time, I felt that the child I read about with the alphabet soup of labels and diagnoses was not the same child I would meet and get to know in person. A diagnosis could never tell me about the child’s personality, his likes and dislikes, or what would motivate him to learn. Bucking protocol, I insisted upon meeting each child first in person before reviewing their chart or records.
My special education textbooks would provide a quick synopsis of most of the different diagnoses which would enable a child to receive special education services. But what most textbooks failed to do was to discuss how to teach and treat children having multiple diagnoses. Yet these are the very children who are usually in the special education system. During those years of learning how to teach, I marveled at the parents who seemed to have such a daunting task of parenting a child with multiple diagnoses and challenges.
I would never have guessed back then, that I would someday become such a parent.
Through my own experience in raising a child having more than one diagnosis, I have a special empathy for any parent going through the whole diagnostic journey. It is not for the faint hearted. In my son’s toddler years, we knew something was up with him but we didn’t know what. During our search for a diagnosis we heard many things from doctors, therapists, teachers and assorted experts including things like:
"This looks like ADHD to me."
"Could be just a developmental delay."
"He is so into numbers and letters"could be hyperlexia."
"Have you heard of PDD or pervasive developmental disorder?"
"He presents as a child with apraxia of speech."
"Your son exhibits autistic behavior."
"I am going to recommend he see an Occupational Therapist for his Sensory Integration Disorder."
Does any of this sound familiar to any of you parents? It was absolutely maddening. There was nothing simple about the process and quite often the experts would disagree with one another. There were some professionals who outright refused to give any definitive diagnosis because my son was deemed as too young. For school purposes my son had "developmental delay" in his records. His speech therapist labeled him with apraxia of speech. His occupational therapist said he had sensory integration disorder. His early intervention team and the psychologist we hired told us he had symptoms of ADHD but also exhibited behaviors characteristic of an autism spectrum disorder.
It wasn’t until my son was nearly four, and after seeing many professionals, and having a battery of tests and assessments, that he was officially given a primary diagnosis of autism. Yet depending upon the specialized service of any individual therapist or doctor, my son has a bunch of additional labels and diagnoses.
As difficult as this time was of being in such limbo as far as any definitive diagnosis for our son, some parents go through this struggle for years upon years. In some cases the child may have a list of diagnoses a mile long and some of diagnoses may even change over the years. I have known plenty of parents whose child starts off with ADHD only to have it change to Asperger’s Syndrome or an autism spectrum disorder in later years. Speaking of Asperger’s Syndrome, there is some speculation that Aspergers may cease to be an official diagnosis in the upcoming revision to the Diagnostic and Statistical Manual of Mental Disorders.
Labels and diagnoses may change. Your child may have a long list of acronyms attached to his or her name or have a chart as big as an old fashioned telephone book. But one thing is not going to change. This is still the child you love and who loves you. No diagnosis can take that away.
We would like to hear about your experience with diagnostic labels. How many of you are still in limbo as far as getting a definitive diagnosis for your child? How many of you have a child who has multiple diagnoses? What advice would you give to other parents who are facing the challenge of raising a child who has multiple challenges or special needs? Your advice and experience can help someone else who is going through this process. We want to hear your story.
I am a mother, a writer, and now an MS patient