Inclusion in the community and by the community is such a rollercoaster. As a society and community we judge whether we do it on purpose or subconsciously and it’s translated by a disapproval glance and a shrug. We all navigate and see life through a frame lead by our perspective. In my autism life, I feel that I am being scrutinized all the time, I have always been noticed, then observed, then judged through a frown, a baffled eyebrow and sometimes a bold comment is uttered. But that’s not all when it comes to autism; there are a few comments that trigger a perplexed question in my head.

 

“He doesn’t look autistic” “ He doesn’t look like he has a condition.” Does this label feature: “autism?”  Or is it simply that the world isn’t ready to see the invisible differences among the different? Anyway, is this what makes the inclusion endorsement challenging? In my experience, I thought that was the most challenging part of the journey; equipping a community that welcomes learning differences. The community often labels your child as; low and high functioning. Would “Higher functioning” make the inclusion easier? A parent wrote once “the label of low functioning can become a self-fulfilling prophecy whereby a person is seen as low functioning and thereby treated as such.” But for us all, it informs the expectation of our community towards the autism population: low expectation means low support and intervention and low acceptance yields to rejection or indifference.

 

Anecdote

Hailing differences is one of my objectives to educate others about autism and its ramifications. There’s always room to make a difference in one’s life. The learning experience of an individual with autism depends as well on a community that is tolerant and open to inclusion. My son and I started attending our neighborhood church St Mary when he was 4 years old and at that time he was very sensitive to sounds as well as becoming less and less verbal and heading into rapid regression. When my son reached 4.5 he started experiencing discomfort in many different ways and his coping skills had not developed and become strong yet. He attended Sunday school class at church like other kids.  Absorbed into an un-stimulated classroom and a teacher that conducted endless lectures with a high pitch voice became overwhelming and he coped by singing loudly so as to conceal all those unsettling noises around him in the classroom. I was called most of the time to remove him and I was blamed for his singing that disrupted the teacher’s lecture (so I was told). I wanted to give the benefit of doubt to that Sunday servant and didn’t want to slide into thinking that ignorance was a barrier to an appropriate inclusive venture. I decided instead to enroll myself to become a Sunday Servant and my training was armed with two goals: My first goal was that teaching as a Sunday servant would help him and other kids with learning differences so that they could be included within the church community and be able to attend holy events and make their social experiences positive at this young age. While I was in a training session – my son wasn’t with me, he was with the other kids in Sunday classes, thus without any one on one support.

 

I always had more trust and confidence in my son than the adult that led the classroom. His imitation skills are intact and he would follow his peers rather than listen to the teacher’s directives, as there would be too many unnecessary words that would confuse him. Sunday servants come from all backgrounds but they have limited or zero experience in dealing with kids with autism. My second goal, when taking the training, was to create peer-meditated intervention through verses, songs and chanting and to create an inclusive-driven community in a holy place. The classes run from preschool through high school. I was confident that this experience would yield a positive and successful result with real understanding about learning differences. My anticipation was that my kid with autism would catch up and grow in social experiences within a community that could embrace his learning differences, and by extension many other kids on the spectrum would also benefit….. We kept going two more years – following a church rhythm as part of our life’s routine. Despite being ousted from class to class, we still continued to attend church mass until it just became unbearable. My son was 7 years old when he last attended church and a church event. I remember thinking that was a failure on my end, but upon reflection it was the community that wasn’t mature enough to embrace inclusion.

 

Today, I have bittersweet memories about that portion of my journey because I know that through the experience, at least I was able to grasp an opportunity to enlighten others about inclusion.