Tag Archives: ASD

No Family Is An Island

Photo: Gabor Gasztonyi

UPDATE:

Today is World Autism Awareness Day. I’m re-posting this post from Oct 24, 2011 wherein I documented our autism journey, its heart wrenching challenges. Since then our son has attended Capilano University to earn a certificate in documentary filmmaking, worked a stint at Electronic Arts and attained huge success with his RAYCEVICK YouTube channel. With half a million subscribers, he’s blowing me out of the water! More importantly, Lucas has become a fine young man and an even stronger individual.

My baby turned 17 yesterday. My baby is autistic. ASD. Aspergers. On the spectrum. Autism Spectrum Disorder, largely characterized by a withdrawn personality to varying degrees, a condition I’ve become all too familiar with, a very nuanced condition. I don’t like the term disorder. I believe there have always been autistic people, people whose neurology is wired differently, both the highly functioning and severely affected. These days it’s called “neurodiversity.”

A colicky infant, I noticed my son’s language delay around age two. I took him for a physical examination and a hearing test, both of which provided relief and positive outcomes. The next step was a visit to Sunnyhill Health Center for Children in Vancouver where he was subjected to a series of tests and evaluations by a team of pediatricians, psychiatrists, occupational therapists and social workers. Junior was diagnosed with a “moderate to severe language disorder,” which to this day bemuses me. Though late, Junior was talking, albeit not as well as his peers. Being my first and only child, I had nothing to gauge his behavior and development against. Being my son’s matrix, I didn’t detect inconsistent eye contact or social awkwardness. We were bonded, Junior affectionate.

Speech therapy was recommended and for the following seven or so years, we worked with a series of speech and language pathologists, one so horrid we turfed her after one visit. Yes, he needed to learn self-regulation but my son is a Continue reading

LIFE AND DEATH ON THE SPECTRUM

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This is a difficult subject, raising a child on the autism spectrum, especially painful in the wake of Newtown. I was heartbroken by news of the tragedy and dismayed to learn the shooter had Aspergers.

I felt both great empathy and unease watching the PBS Frontline documentary, Raising Adam Lanza, about the relationship between Adam and his mother Nancy. Though experts agree individuals with Aspergers are no more prone to violence than people without the developmental disability, I worry the public will characterize kids on the spectrum as aggressive, a huge setback in hard won autism awareness.

My son is two years younger than Adam Lanza and finding a proper diagnosis was a long, arduous struggle, finally achieved at age 10, about the same age Adam was when he was diagnosed. Initially Junior was erroneously perceived as having a “moderate to severe language disorder.” I still don’t know what the heck that means but he received years of speech therapy, which as it turns out was the last thing he needed, being highly functioning and beyond verbal to the point of verbose. It’s body language he doesn’t get. More details on this and our desperate search for information are at this previous blog post and the only other time I’ve publicly addressed my son’s ASD.

Adam Lanza had initially been diagnosed with SID, Sensory Integration Dysfunction, also known as SPD, Sensory Processing Disorder. It’s not a recognized diagnosis nor included in the DSM-IV-TR Diagnostic and Statistical Manual of Mental Disorders. As reported by Susan Donaldson James, “Whether SPD is a distinct disorder or a collection of symptoms pointing to other neurological deficits, most often anxiety or attention-deficit hyperactivity disorder (ADHD), has been debated by the medical community for more than two decades.” Adam Lanza’s lifetime.

My son’s sensory issues were well documented, considered part of his ASD and certainly challenging. He abhorred particular fabrics, ripping out tags and discarding the socks with “stupid seams.” Refusing to wet his head, hygiene was a serious concern. It took years to overcome his anxiety and get in the shower on a daily basis but he still doesn’t know how to swim and refuses to take lessons.

Unlike a lot of kids on the spectrum, our son’s motor skills were fine. He began walking at 10 months, was a prodigious golfer with a beautiful swing everyone envied. Though shy with strangers, he had no problems with physical contact and was always affectionate with family. He’s less demonstrative as a teenager but if I ask for a hug, he delivers a hug with no qualms.

I may seem anxious to point out how my child with Aspergers is different from Adam Lanza, but because it manifests in a seemingly random but singular fashion, every child on the spectrum is different. Unique. Our choices, options have been dictated by how ASD has affected our child.

I got the impression mother and son were becoming Continue reading

The fun never stops! Poetry, his and mine.

Listening to Miguel Migs playing Bump Selectra, a dub selectra mix on the Beat Blender play list on Soma FM, recalling the meeting Josef and I had with the RDI consultant this morning. It was a fairly productive meeting though I suffered a headache the entire time. We need to work on Junior’s non-verbal communication skills. Less talking on our part as well, so that he is forced to reference, check in with us. An over-reliance upon words keeps him in his own head in a sense. It’s so frustrating that he was misdiagnosed and not identified as ASD until age 10! He was prescribed years of speech therapy which turns out to be the last thing he needed. Vocabulary does not equal communication. We want him to look at us before talking, before launching into a topic. It is imperative for him to shift his attention to the person he is interacting with. Get in his face, literally, is what we need to do. There are techniques like pausing until he references us, feigning incompetence and doing something unexpected. All these things force him out of his static thinking mode. Our objective is to help him develop flexible thinking and dynamic communication.

The fun never stops! As we all recover from our fabulous AURAL Heather performance enthusiastically recieved at the Violet Femmes 2 compilation showcase, I now must focus as well on a grant application for the next week, for the Canada Council Spoken Word and Storytelling program. I want to write up a proposal for a Continue reading