by Elizabeth Sparling, BCBA

Sparling is a Board Certified Behaviour Analyst, has more than 20 years’ experience working with children, youth and adults with developmental disabilities. Elizabeth has a long history supporting and educating persons with developmental disabilities which was honored with the presentation of a QEII Diamond Jubilee medal for outstanding service as a Canadian citizen. She is the founding president of BC-ABA (British Columbia Association for Behavior Analysis), a recognized chapter of ABAI (Association for Behavior Analysis International).

     As humans we seek belonging. Kinship with others is valued, that is the purpose of friendship – we seek others with shared interests, we congregate around a theme. Historically, our survival depended on the group and while we can live independent of one another for the most part, we are not wired for that lonely journey. Many individuals with developmental disabilities are excluded from their community; some are excluded from school, some are surrendered by their families; others are made unwelcome at local churches, community centers and social groups. My local news station has been running a story about a little boy with Down Syndrome, who was the only child in his class not invited to another child’s birthday party. His tribe of fellow classmates, with whom he’d spent the whole year, betrayed him at the end. This story is now making the rounds of social media… I don’t generally read the comment section of these stories, because its often heartbreaking and infuriating; and I figure I’ve had more than my share of these experiences as a parent of a son with Autism Spectrum Disorder and an intellectual disability.

     Fear and vulnerability…these are common feelings experienced by parents of kids with special needs. I wish I could say that these feelings are infrequent or that they resolve as our children grow up, no longer do we need to worry about the “dreaded lack of birthday invitation”… not so, in many ways, our children are exposed to greater risk. In my job as a Behavior Analyst, I work with families to teach their kids adaptive behaviours so that they can be more independent and head out into the world, but its not without danger, and I do the same for my own son. Teaching skills that build independence puts our children at risk…we (professionals) refer to this as the “dignity of risk”, its necessary, but its scary for parents. My son is a huge music fan. He has an extensive knowledge of music trivia and a passion for rock, heavy metal and death metal. We attend concerts regularly in Vancouver, British Columbia, given the extent of my son’s disability; he is unable to travel alone although he has now reached the age of majority.

     My son is not a child; he’s 20 years old. He’s also 6 foot 5″ tall and prefers to wear a black hoodie, a hat and sunglasses. At first appearances he looks “normal” (however you want to define that – that’s a whole other subject)… Last year, we attended the AC/DC concert and my first moment of pause (fear) occurred when we were going through security into the concert. My son was in his “attire”, I was stopped a bit further back (having my purse searched) and my son went ahead to go through the security. The gentleman at the door issued a command in a sharp voice to him, he did not respond, he just stood there. The security guard moved forward, my son stepped back, I then abandoned my purse to tell the security guard he had ASD, so if he could just ask him to do what he needed done in a calm, non-confrontational way, he’d comply. The guard said, “oh, you’re his mom, that’s fine” and didn’t proceed with a security check… I gathered my purse, we proceeded forward, and the door lady said: “your son looks intimidating”. My heart fell as he’s really this giant kid, well, he’s my kid, he’s an adult, but what if they knew we’d packed his stuffed animals for the trip…