My oldest child, Cameron, who is now 21 years old, was diagnosed with Asperger’s Syndrome (AS) when he was in 5th grade. He is graduating next semester with a four-year college degree and an intention to proceed to graduate school. Any parent with a child on the “Autistic Spectrum” will recognize the journey that we took to get to that diagnosis and to this place. I am writing this blog to help others out there who are teachers, caregivers, family members, friends, and/or healthcare providers of these very special kids. I say special not in a sense of somehow handicapped, but special as in unique and with something to offer the world that comes through a lens of rigorous authenticity. People with AS are known for their unrelenting honesty and inability to tell even the whitest of lies to please another. What a wonderful gift for society to receive; members who have integrity that is so deeply ingrained that it is actually almost impossible to lie.
The reason I had my child evaluated was because of a parent teacher conference gone bad. Cameron’s 5th grade teacher felt I was too “enmeshed” with him and was milking the system for the individualized educational plan (IEP) he had in place. She felt that he would function just fine without my “interference”. His IEP stipulated he was to have someone sit next to him at the front of the room that didn’t fidget or interrupt in class. That particular 5th grade class was full of boys who had been diagnosed with Attention Deficit with Hyperactivity Disorder (ADHD) and Cameron was falling through the cracks. There had never been such a distorted ratio of boys with ADHD and so few girls in this elementary school before and the teachers were at their wits’ end trying to teach them and maintain order. Kids with AS frequently sit in class and daydream of their latest passionate interest and can get lost in the river of education as a result. I had asked for one of the quiet, steady girls to sit next to him so he wouldn’t get distracted and come home not knowing what was discussed in class.
When the teacher told me I was the problem, I thought to myself, “maybe she’s right, maybe Cameron and I should both be tested and see what is going on. Let’s face it, I AM stressed that my son doesn’t pay attention in class, is distracted on the soccer field by an ant hill, hums quietly to himself at the dinner table, and doesn’t get invited to birthday parties. Maybe reading about birds of prey, building mobiles of birds of prey, going to the Museum of Natural History in Salt Lake City for the birds of prey exhibit EVERY WEEK, making masks that represent birds of prey, doing a hawk on his birthday cake, and generally immersing myself into the world of birds of prey with Cameron is a big mistake. (Birds of prey were his current passion and he could tell you EVERYTHING about the subtlest feature of each of the birds of prey in the wild you could possibly want…and much, much, more).
Our first visit to the psychologist was educational. Cameron had a high IQ, yet his grades didn’t reflect it. I noted that he only had limited eye contact with the psychologist as he answered his questions. His voice became a little flat in the clinical environment, which I thought was a reflection of his obvious anxiety. The loud noise of a jackhammer outside the psychologist’s window was distracting and quite noticeably jarring to his nervous system. “Yes”, I answered to the question I was asked by the clinical psychologist, “I have noticed this tendency to be rattled in response to loud noises from infancy…but I don’t like jackhammers either”. My child did not like the sound of a balloon popping, a teacher yelling (he had a yeller in kindergarten), and could certainly not follow instructions or concentrate if the television was on in the same room. We had learned to keep the TV off, keep the noise level down at home, and I knew how to soothe him out of what I called his “turtle shell” when he came home from school each day after being with screaming kids and frustrated, angry teachers. I didn’t realize I had learned to pitch my voice low and rarely raise it with Cameron. He only needed a tonal change to know I was disappointed and he immediately sought to change whatever behavior he thought was bothering me.
Developmentally, his speech had been right on track as a toddler, he was a little late walking, but nothing triggered any alarms during his early childhood development. “He hasn’t been invited to a birthday party since he was 6 years old” I said, eyes welling up with tears. He was so sweet natured and his best friend was his brother, 22 months his junior. “However”, I said, choking up again, “his brother has started wanting his own friends and is getting resentful of having Cameron around all of the time”. As almost an afterthought, I added, “I see him wandering around alone at recess and eating by himself in the lunchroom when I volunteer at the school and it makes my heart hurt; I don’t know how to help him”.
The psychologist called me back in a week later to go through the results of Cameron’s tests. “First of all, I just want to tell you that this child is the luckiest kid alive to have a mother who is so attentive to his needs. You are NOT the problem”. After a huge sigh of relief, I then asked what the problem was. He told me then about Asperger’s Syndrome. The University of Utah had a researcher who was focusing on AS and he wanted us to make an appointment for Cameron to be evaluated. After the consultation at the U of U, it was confirmed that Cameron was “high functioning AS”. I was told what this meant and that there were no resources in the area at that time because AS was a fairly new diagnosis. It turns out that Viennese pediatrician, Hans Asperger, had actually begun putting the pieces of what would later be called Asperger’s Syndrome together in 1944, after noticing the behaviors of a small group of similar and unusual children he found intriguing. “However”, the researcher told me, “there is an expert from Australia who has been studying AS for several years who will be in Salt Lake City next week speaking to healthcare providers and educators. You might want to look into it”.
The Australian expert who was lecturing in Salt Lake City, which at that time was the late 1990s, was named Tony Attwood. Dr. Attwood brought me to tears within 15 minutes of his talk as he described a child with AS trying to “play with” another child without AS. I was laughing so hard I was crying at the perfect description of my son. He then went on to explain the unique characteristics I had taken for granted as part of my son’s personality, explaining they were all part and parcel of this syndrome that had been put on the autistic spectrum for the ease of diagnostic categorization. He talked about the reasons Cameron could not understand sarcasm, why he took anything that was said so literally, why he didn’t show as much empathy as I might have wanted, and why he was so challenged with his fine motor coordination and didn’t want to play sports, play the piano, learn to dive, or ride a bike as a result. In short, Dr. Attwood saved my child’s self-esteem by letting me know that I needed to change my expectations of what he was capable of. In that moment, I understood why Cameron got so anxious with change, why he was so completely and utterly disorganized, and why he couldn’t remember what I asked him to do if I gave more than one instruction at a time.
Dr. Attwood was an angel cleverly disguised as a doctor at a time when I desperately needed information. That same lecture helped me understand why Cameron and I were both experts on trains (pre-school fascination), amateur paleontologists (kindergarten through 2nd grade), zoologists (many species of the animal kingdom became very interesting until 6th grade), and then we parted ways when he began to get into basketball (I couldn’t get passionate about that one), and came back together when he was in high school as we both explored the spiritual traditions of the world together in response to his ever deepening questions about why people acted the way they did. I even started a youth group, Youth Exploring Spirituality (YES-U), to feed this passion. Interestingly enough this youth group attracted a few other kids with AS, forming a community of united passionate young people who were beautiful to be with. I honestly believe that YES-U saved Cameron from what looked like a life of misery in the public school system.
What is his current passion? Like many young people with AS, he has grown into an adult with many passions. There is a definite AS feel to his relationship with his girlfriend of four years…he is able to hyper-focus on her in a way that most women yearn for in relationship. He continues to write and is graduating with a major in Asian history and a minor in comparative religions this year. He excels in finding the patterns of mankind throughout history and applying them to current events…something I believe we could use more of. Someday we will see bestsellers on the shelves in bookstores as he combines his passions for science fiction and fantasy together with philosophy, spirituality, and history and puts it all down on paper.
Like many kids with AS, Cameron learned how to emote and read emotion through acting. I put him in acting after reading the “Social Story Books” by Carol Gray. When he was in 5th grade, he began crafting his facial expressions according to the needs of a director. His artistic expression was redirected to writing when he was 14 years old and struggling with the new hormones of puberty and the emotions that go with them. He is a deep thinker and philosopher and a prolific creative writer with an imagination that won’t stop. He takes the darkness, the existential angst, the deep questions, and the vivid imagery he experiences and creates worlds that have characters that sometimes have slightly stilted dialogue; art imitating life. I used to be worried about some of the darkness that came out in his poetry, songs, and stories. Now I rejoice that he has an outlet and think him fortunate for the gift of words and fantastic imagination. So many “normal” people could use an outlet for their stress that is so healthy. And so many “normal” people could really use a large dose of Aspergerian integrity. I think the world lucky to have people who can receive information through such different filters…we could use some new ideas and different solutions for the problems that ail us.
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If you know someone who struggles with making friends, can’t seem to function socially, has an interesting speech pattern, has unique food likes and dislikes, and fits some of the picture painted above, here are a few resources for further information:
The Complete Guide to Asperger’s Syndrome by Tony Attwood
The New Social Story Book, Revised and Expanded 10th Anniversary Edition: Over 150 Social Stories that Teach Everyday Social Skills to Children with Autism or Asperger's Syndrome, and their Peers by Carol Gray
Look Me in the Eye: My Life with Asperger's by John Elder Robison
Pretending to Be Normal: Living With Asperger's Syndrome by Liane Holliday Willey and Tony Attwood
http://aspergersnw.org/links.htm
In addition, people on the autistic spectrum frequently have food allergies and gut issues. Keesha Ewers, ARNP has spent years using nutrition as an intervention to heal the gut. Please make an appointment if you would like to have a noninvasive “gut test” that can be diagnostic of issues that are easy to treat and can change quality of life. Keesha lectures on this subject and freely shares information with autism support groups. In addition, her master’s thesis was entitled, “Managing the Anxiety of Children with Asperger’s Syndrome Entering Middle School”. This was a study done because her own son was struggling with the transition from elementary school to middle school. She successfully used biofeedback to teach kids how to calm themselves through the transition from one classroom to many classrooms, teachers, and combination locks. She has also studied NAET, an allergy elimination technique that has been shown to reverse many of the symptoms of AS that can be caused by allergies. She has studied the GAPS (Gut and Psychology Syndrome) Diet and the Specific Carbohydrate Diet and uses them as nutritional interventions for AS. Please see her archived interview with Dr. Natasha Campbell-McBride, MD at www.healthyyouradio.com which aired on 12/29/10.
