A child diagnosed with Autism Spectrum Disorder/Asperger's craves rigidity and sameness in a world that is neither. To compound things even further, a child on the spectrum doesn't generally have the ability to socially engage in a way that would soften the impression of these less-than-winning characteristics. Often, he or she doesn't even have the language to explain the need for "sameness," which can add to the day-to-day stress you as a parent experience trying to protect your child, your family, and yourself from the misunderstandings that result.
For whatever reason, many folks have an immediate negative reaction to things they don't understand. And that negativity often leads to uncomfortable interactions, such as the one Max, Adam and Zeek experience while confronting a rude stranger in the grocery store in this week's episode. Sometimes these interactions come in the form of unwanted advice, whereas at other times they are in the form of frank rudeness and even name calling of your child or of you.
These interactions may tap into a strong undercurrent of anger that is often part of the emotional baggage that many of us living with children on the spectrum must learn to manage. I certainly have had to learn to manage mine. When my son Frankie was first diagnosed with Autism, I was very angry - inexplicably angry. I even remember having the urge to shout at the top of my lungs at the doctor who gave us the "official" diagnosis. Part of that was in reaction to her less-than-stellar bedside manner, but it was also utter rage against my own sense of helplessness at what seemed like a hopeless situation.
But I wasn't helpless, and the situation was not hopeless. Over time, I have learned to manage my feelings of rage by channeling them into positives that I can use to help Frankie, and by simply learning to appreciate his wonderfully quirky-yet-rigid outlook on the world.
The tangible things I have been able to do with my redirected energies include:
- • Participating as intensively as I can in Frankie's interventions and therapies.
- • Spending my time helping him to develop more skills.
- • Working to become a facilitator for his social interactions.
- • Becoming a fierce advocate for him personally and as the member of a growing group of identified children.
But the most important thing we've done was actually started by Frankie himself. As he grew and developed more facility with language, my son began to talk about his "troubles." Eventually he even began to talk about his "troubles" in relationship to other children's troubles or, alternately, their apparent lack of such difficulties. This has finally grown into his being aware of and accepting - but not embracing - his own diagnosis of Autism Spectrum Disorder. This has helped him in his social interactions and in his ability to "explain" himself to others - especially strangers.
By encouraging as much self-awareness and advocacy as possible for children in my clinical practice, I have seen positive effects for children in their peer relationships and their ability to navigate the world when they become at least nominally aware of their situation. Granted, the kids' explanations are perfunctory and even odd, but they do seem to help. And as I help the children diagnosed with Autism Spectrum Disorder/Asperger's learn about and accept the diagnosis and to advocate for themselves, I also work with their parents to become aware, accepting and advocating for all of our children on the spectrum.
Steps such as these don't keep hurtful interactions like the one in this week's episode from occurring, of course, but they can help the child diagnosed with Autism Spectrum Disorder/Asperger's handle some of the hurtful interactions more effectively. For example, when Frankie was asked by another boy at a church camp one summer if he was a "retard," he was able to say "I have autism and trouble with learning." This diffused the situation pretty effectively. I was furious when I heard about the taunt, of course, but I experienced an even greater sense of pride in Frankie and how he was competent enough to handle the insult so directly and intelligently. Even though he is living on the spectrum, he certainly proved to be the more mature party in that particular exchange!
In conclusion, we are never going to be able to completely change the small-mindedness and frank ignorance of many people, but we can certainly arm ourselves and our kids with tools to make those incidents of meanness less distressful and harmful. Ideally - as my son Frankie demonstrated - at times we can even make these into teachable moments.
Written by Roy Sanders, M.D.
http://www.youtube.com/watch?v=POIJG3qmV9Q - A video by Rory Hoy (a young man with Autism)
The following information provided by the CDC:
Take the R-word Pledge - The Special Olympics
Special Olympics Initiative to encourage people to take a pledge to stop using the word "retard" as an insult or a putdown: http://www.specialolympics.org/r-word.aspx
Communicating with and About People with Disabilities - CDC's National Center on Birth Defects and Developmental Disabilities Poster
This poster provides suggestions on how to communicate with and about people with disabilities using people-first language. People-first language is used to speak appropriately and respectfully about an individual with a disability. People-first language emphasizes the person first, not the disability. For example, when referring to a person with a disability, refer to the person first by using phrases such as: "a person who...", "a person with...", or "a person who has..." http://www.cdc.gov/ncbddd/disabilityandhealth/pdf/DisabilityPoster_Photos.pdf
Your Words/Our Image - KU Life Span Institute
This poster lists negative and positive terminology in reference to people with disabilities.
The name of the Committee was changed from the President's Committee on Mental Retardation to the President's Committee for People with Intellectual Disabilities by former President George W. Bush on July 25, 2003, during the celebration of the Americans with Disabilities Act. The name change sought to update and improve the image of people with disabilities who were formerly referred to as people with mental retardation and to help reduce discrimination against these citizens. Also, it sought to reduce the public's confusion between the terms "mental illness" and "mental retardation" and to remove the use of terms which resulted in faulty name-calling. Read more here: http://faq.acf.hhs.gov/cgi-bin/acfrightnow.cfg/php/enduser/std_adp.php?p_faqid=926&p_created=1068050311