I recently (March 2013) self-published a book I wrote relating my family’s experience with autism and how it affected every aspect of life. My youngest brother (number 4 of 6 children) is diagnosed with autistic disorder. The book is called Secondhand Autism, playing off the imagery of secondhand smoke as well as a secondhand store, capturing the feeling of living with autism in the home; sometimes it feels life threatening and sometimes it feels like it breathes new life, autism that is. The following is an excerpt from the book, which is available for the Amazon Kindle or in paperback.
Locking doors and rooms extended beyond Scott’s safety. Any possessions that the rest of us wanted to keep in working order had to be hidden or locked up. A bag of candy left where Scott could get it was as good as gone. Depending on what type of behavioral phases Scott was passing through, books and paper goods wouldn’t be safe if exposed. He would rip them up or write on them. Clothes were even a target for a while. Scott would collect all of the clothes he could, his own or anyone else’s, and put them all on. It wasn’t uncommon to find him with a dozen pairs of pants layered on. This, we assume, has to do with the sensation of pressure on his body, which is a common method of stimulation with autistic disorders. We had to keep everything locked up if we didn’t want Scott to get it. I’ve compared our home experience to that of a correctional officer with a ring of keys, locking and unlocking doors everywhere he goes. I still have a set of house keys though I no longer live there. On the ring are keys for the front door, back door, laundry/utility room, kitchen and two bedrooms. Without those keys I can watch TV in the living room or use the bathroom, everything else is locked up. (p. 16 in print copy)
I share this excerpt because I think it helps illustrate how much of a change in one’s paradigm that a diagnosis of autism can bring. This is something my wife and I have been discussing lately. She is a teacher by education and licensing. Formerly she worked as a para-educator with a second grader who has some autistic traits. We were talking about the interaction between the school and the parents of children with autism or other disorders and delays. It is difficult for someone to really understand the impact of a diagnosis like autistic disorder without experiencing it firsthand. Even then, the experience differs so greatly from one individual to the next that the best you can really hope for is a general understanding.
Autism changed everything for my parents. All that they had experienced with their first three children was going to be different with their fourth. School would be an area where this was dramatically noticed. My parents weren’t school administrators or educational faculty members. It is likely that the majority of the school personnel my parents interacted with were not parents of autistic children. Today the awareness of autism is increased, perhaps skewed, but certainly increased when compared to the 1990’s when my parents were entering my brother into public school.
I think about parents going to talk to school personnel, each having their own perspective on the situation, and not clearly understanding that of the other. The school personnel need to know that with the introduction of autism everything in the parents’ lives changed. The way they view their child, the way they view each other, the way they view themselves. How they interact with their community. The functionality of their home. How their child responds to clothes, food and personal hygiene. Every aspect of life has changed, and over time the normal perspective that is common among average people no longer exists in the mind of an autistic child’s parents.
This paradigm shift isn’t bad. It is simply the necessary adaptation to a new situation in the home and family. I bring it up here to point out that the shift is serious, and extensive. Anyone who does not live with autism, but works with it, really should be aware of how extensive the its reach is into the lives of those it affects. If you are a professional working with parents of autistic children and find you have a hard time communicating with them, remember that their perspective is likely as different from yours as yours is from that of the autistic child. If you are a parent of an autistic child and wondering why no one else can seem to see things the way you can, please be patient, the truth is that they don’t see things the same way. Although it is difficult, if you can remain patient, you can be the ambassador for positive communication that you are seeking.
The general message here is that perspectives vary from person to person. For the most part people from the same culture and society will share many similarities of perspective, and that’s how we get through the day with acquaintances and brief interactions with strangers in a supermarket. But when deeper communication is required, empathy goes a long way in improving communicative functionality. Whether the topic is autism, children with disorders, or anything else, trying to see things from the other person’s perspective will always be beneficial.