Since my son was a "late diagnosis" (he was diagnosed with Asperger's Syndrome/Disorder just after his 7th birthday a year ago today) sometimes I am asked if I was blindsided by the diagnosis.
My answer--not really. Though there is still a stigma attached at times to an autism spectrum disorder diagnosis, it's not the end of the world. I suspected my son was on the diagnosis since toddlerhood. There were clues all along. I had odd insurance coverage and certain specialists and diagnoses were not covered (including almost anything in the DSM). Since my son had signs of sensory disregulation and Asperger's that can often mimic ADHD, his pediatrician asked if I'd be willing to try a stimulant medication to see if it would help. He wasn't officially diagnosed with ADHD (I don't remember what the pediatrician coded him with) but we tried the medication. It didn't do much other than make him more likely to cry and totally killed my kid's appetite. He was tall & slender, on the medication he became skinny and often would burst into tears for no obvious reason. I later found out that it was because he didn't need this type of medication, in fact he didn't really need medication, he needed accommodations & interventions such as occupational therapy. I don't fault his old pediatrician, he did what he could within the constraints of my insurance coverage and tried medical therapy that happened to not work....
When we switched pediatricians she said she didn't think he needed stimulant medication. He acted "typical' as far as 'hyper' activity--he was just an active boy. But she knew something wasn't exactly right but it was beyond her scope of practice so she referred us to a local developmental pediatrician. Unfortunately the developmental pediatrician said "known to have ADHD" though he shows no signs of ADHD and his Connors scale ratings were firmly within the average spectrum of a typical child.
At this point I was doing my own research and found the "Out of Sync Child" book by Carol Kranowitz. It was like a light bulb went on in my head. THIS made sense. His pediatrician agreed, but she didn't feel comfortable making the diagnosis so she referred us to a specialty children's hospital and a neurologist who was an expert in sensory processing disorder (SPD). Half way through first grade my son finally had a quality occupational therapy evaluation and he scored off the charts in all the sensory testing performed...looks like mom was right. The school therapist was great, she gave me lots of resources and tasks to work on at home. She started a brushing protocol (which I had unknowingly been doing with a washcloth for months prior), introduced us to heavy work and therapeutic listening.
A bit of historical background on my son..
When he was a toddler & started walking there were signs of SPD and an ASD (autism spectrum disorder). He'd randomly lick the walls or start banging his head (it would freak out my dad, he commented once that he was showing autistic behaviors--this from a man who refers to diabetes as "sugar"). He had poor eye contact which drove me nuts because I was never sure he was listening to me. The day care said it was "normal" at 2-3 years old to not have good eye contact. I knew better but I regret that I didn't do anything about it. He wanted friends but would not always know what to do socially. He'd often play with the girls not only because they were less rough than the 'turn-everything-into-killer-dinosaur-or-tackle-sport' boys but they were more likely to tell him what he was expected to do. My son had problems following multiple step directions, fine motor skills, on-task behavior, was touch, light and very sound sensitive. I begged for help to refer him for evaluations, but the school pooh-poohed my concerns. I knew something wasn't right but I did not know where to turn. I did not know how to advocate for my son. My mother put blinders on (to this day she thinks I 'talk too much' and that I am 'ruining' my son by getting him an IEP. She doesn't understand that I am advocating for & protecting my son.) When I had his first round of IEP evaluations, the school psychologist decided that he must be ADHD (even though she cannot legally make a diagnosis as she is not a legal psychologist nor a licensed professional counselor) and not surprisingly when she asked her consultants to evaluate him for ADHD they all came back with that diagnosis. One psychiatrist did not even have any rating scales completed and couldn't even get how my son was born correctly. His evaluation consisted of asking my son to spell DOG which he spelled "G-O-D" and whether or not he was sad that my father (his grandfather) passed away--which of course was yes. So the 'doctor' diagnosed my son with ADHD (though he again showed no signs of ADHD during the evaluation and no Connors scale was completed) and probably depression (secondary to the death of my father). I went with it, not knowing any better, since at least it qualified him for an individualized education plan.
As his education continued, his writing was poor & his expressive language skills did not improve. He struggled in school when there was not a set routine but random activities. He became more anxious, to the point that they labeled him as a "behavior" problem and an "emotional problem" because when he was frustrated or anxious he would escape unto himself and ignore the classroom aide who would badger him. When he would shut down, no work would get done. He was labeled as willfully disobediant, defiant, and oppositional. (Even in second grade with the Asperger's diagnosis)
Then I found Wrightslaw and SPAN and a whole host of other resources.
Now last summer after a long 7 month wait, we finally had our appointment with the pediatric neurologist at the regional children's hospital. (An affiliate of CHoP) . I brought a list of questions, discussed my observations of sensory issues (as well as those of the occupational therapist and his pediatrician). My son's insistence on routine was obvious when I accidentally shuffled the songs on my iPod and he flipped out because the songs "were not in the right order". We discussed what I had seen in my son over the years (his his obsessions with time and science and sports and rocks), his social awkwardness, his fine motor difficulties, his impaired social interaction & difficulty with eye contact. The doctor could assess his pragmatic language and expressive language difficulties on a small scale. The doctor even asked to look at my set of questions to make sure he answered them all. At first I didn't want to bring copies of all the assessments from the school (I was afraid of biasing the doctor's opinion), but I gave them to the doctor after he evaluated my son and discussed my concerns. He then said to me, "Your son has Asperger's Disorder but I think you already knew that." He was right, I did. He went on to explain why Asperger's was more appropriate than ADHD, Childhood Disintigrative Disorder, PDD-NOS (Pervasive Developmental Disorder--Not otherwise specified), childhood anxiety, or High Functioning Autism.
In the end I think his reference to the school reports and his explanation how Asperger's may often look like ADHD in certain circumstances
When the report came back to his then primary care pediatrician, we had an office visit. She too was not surprised that my son was diagnosed with Asperger's Syndrom with sensory dysfunction. She suspected the diagnosis but felt that it was out of her scope of practice and expertise to diagnose.
Sometimes I wonder if I could have had my son diagnosed earlier and perhaps got him into the "system" earlier such as early intervention or the preschool disabled program. But I cannot keep worrying about the past, I can only go forward and work on today and tomorrow. Sure I saw signs of autism, social difficulties, and linguistic deficits for a long time, but I was not confident in my own parenting assessment and advocacy skills. I cannot change the past. I can use my past experiences to help others. In fact I am thankful for my past experiences as it has made me stronger and a much better advocate for my son and others like him.
Its funny now because when I meet certain people and professionals they are often in awe of my knowledge base and the vigor I fight for my child's needs. I have had other parents call me for advice and tips to advocate for their child. If they only knew what I went through, how many tears of frustration were shed.
I was inspired to write this narrative by a post I found on the Thinking Person's Guide to Autism blog called The Keeper: A Tale of Late-Childhood Asperger's Diagnosis. I realized that I was not alone.