The picture of autism most often depicted in the media paints children and their worried parents.
I have autism. My picture is different: 45-year-old suburban mom of four, autism advocate and small business owner. But, it wasn’t always that way, because my childhood was like the media depiction without therapies, special education classes, or even a diagnosis.
My mother worried about why I wasn’t talking and seemed to be in my own world, rarely interacting with others. Doctors had no answers for her. Back then, severe autism was diagnosed, but not usually the milder forms.
Now, it has taken the opposite turn. We hear so much about children with higher functioning levels. Some do have severe autism, and they go through their lives never speaking and not being able to care for themselves in the basic ways, such as going to the bathroom. For example, a family friend has a teenage son like that, but the world only knows him as a musical savant, a concert pianist.
Eventually, I began talking and went through usual activities such as school, piano lessons and sports. Yet, to this day, I have the classic autism symptoms such as:
- Seeming to not care about the feelings of others,
- Repetitive motions,
- Not understanding social cues or responding properly,
- Lack of eye contact,
- Blank facial expressions,
- Unusual degree of hyper-focus on an area of interest to the exclusion of other things,
- Upset if my rituals or routines are changed,
- Some difficulty in understanding verbal communication,
- Thinking in pictures,
- Having a high degree of ability in one area and disability in another,
- Prefer to be alone.
Most people with autism also have Sensory Processing Disorder (SPD), which causes an avoidance of sensory-full situations like working in an office cubicle where other sensory input can be heard, smelled and experienced. I avoid situations like the state fair where there are so many smells, movement, touch, heat and sounds. I can quickly become stressed and feel on the verge of crying, getting angry, and doing repetitive movements like hand-flapping and/or rocking.
With SPD, my brain doesn’t process sensory information properly. For an auditory example, when you are out on a summer day, you may hear birds, cars, freeway sound, a lawn mower, kids squealing, people talking, and the wind. Assuming you don’t have SPD, your brain is able to make sense of the sounds as they all come in, and your brain relegates many of these sounds to the background so you are able to focus, perhaps on your friend’s voice as she speaks with you.
To paraphrase Wikipedia, “For those with SPD, sensory information is registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as problems with doing the activities of everyday life (self-care, work and leisure activities), and for some with extreme sensitivity to sensory input, it may result in extreme avoidance of activities, agitation, distress, fear or confusion.”
Having said that I have difficulty in areas of my life, I am now a parent, my mother isn’t worried anymore, and I am close with my family. Like most parents, when my children were born, I wondered who they would be and what course they would take in their lives. We all learn that our children will never be who we imagined them to be, and it is the same with autistic children.
On my blog, “Inside the Autism Experience” at www.EileenParker.com, I wrote a post based on a TED talk by Caroline Casey. I wrote,
“If you have autism, watch and/or listen to this video. If you don’t have autism, regardless of functioning level, don’t hold your autistic child, spouse or family member back. They will metaphorically fall down and bruise their knees, but that is normal, quite normal. So, fall down and see how much higher you can go.
“I read a book a gazillion years ago about a person who became blind. At the blind school, the instructor said to the student that there was a sharp corner to watch out for in the main area. The student asked why they just didn’t pad it. The instructor replied that the world doesn’t cushion us from every possible hurt.”
Part 2 of this series concludes next month with more discussion of sensory experiences and the author’s decision to start a business to assist others with autism.