Resisting That “We” Versus “Them” Mentality
I’ve thought long and hard about New Year’s resolutions for families with autism. I’ve finally come to my resolution, which is a reaffirmation of all the previous years’ pledges. I pledge, again, to lead and encourage families of persons with autism to become a unified force for change.
I’ve been living over here in the alternate universe of Asperger Syndrome before Asperger Syndrome was a listed disability. So I’m no new kid to the universe. Here are some very disturbing attitudes I see of loved ones with autism:
1. Autistic Disorder versus Asperger Syndrome: The most disturbing trend I see recently is whether Asperger Syndrome is even a “real” disability and if so, how it’s so much better to have a loved one with Asperger Syndrome than a loved one with autism.
Wow! People! Get a grip! All disability is undesirable, and, all disability comes with inherent strengths, not just Asperger Syndrome. Why on earth would we spend any time fighting about which one is worse? Talk about a poor usage of time and limited resources!
2. My intervention versus your intervention: This one drives me crazy. People are individuals and individuals must decide what intervention they feel will work for their loved one. Yes, it’s true that parents should have all the information about peer-reviewed, research-based interventions in order to make an informed decision. I will always see that the families with which I work have access to this type of information, but there are a whole lot of families out there who distrust peer-reviewed, research-based interventions.
Families need to understand that fear is the basis for this type of attacking other families because they didn’t choose the same intervention method. Every parent desperately wants to do the “right” thing that will make the most difference for their child and family and when another family chooses another method, it strikes at the heart of that fear, “Did I make the right choice?”
3. Recovery versus lifelong condition: There are clearly two separate camps with thousands of parents everywhere in-between. The recovery camp focuses on totally separate issues from the lifelong condition camp and each side believes the other side is crazy, if not neglectful.
Families need to understand that there as many reactions to autism as there are people. There is no “right” reaction. Families also need to understand that reactions (feelings) change over time, and just because a family is taking a certain approach now does not mean they will be taking that same approach ten years from now.
4. Disability versus gift (fix versus celebrate): Parents of children with complicated, multifaceted disabilities are going to have a totally different perspective from families who have kids with disabilities who also have obvious traits of giftedness along with disability. You bet the parents of kids who are non-verbal, have negative behaviors and overpowering sensory disabilities want to FIX their loved one. You would too, if you were in their shoes. Parents as blessed as myself feel, the importance of celebrating the gifts that Asperger Syndrome brings.
We need to realize that one perspective does not negate another perspective.
5. Inclusion versus specialized services: People who have family members living in state supported living centers (institutional settings) will fight to the death for their loved one’s right to stay living in a familiar environment. Parents fight over whether inclusion or specialized classrooms are appropriate for their loved one. When will we ever realize there is no one “right” or “wrong” approach to educating someone with a disability?
A basic lack of available resources is at the root of much of this division and fighting. There is something sinister that happens when people are given limited resources. Think of people stranded on an island where there isn’t enough food and water for all persons to survive. There is a survival instinct that kicks in and makes us fight to live; to fight over the limited resources because we want to survive. People in these types of situations are released from social norms because survival is at stake.
Unfortunately, there are very limited resources for all persons with disabilities in this country. This lack of available resources tends to lead parents into “camps” or survival groups–willing to fight to get what they feel is necessary for their child and family to survive at the expense of another child or family.
I talked about fear above. Fear is a powerful motivator to fight wars. Look at the history of our country. How many wars have been fought because we “feared” as a nation what would happen if we didn’t go to war. Autism is no different. Fear is all too often the primary motivator in fighting autism and drives too many of our decisions about education and treatment. Hope is a much more stable emotion to access when we are fighting autism’s effects on our lives. When we hope for improvement and change rather than fear what will happen if we don’t do particular thing, the decision is usually a more rationally thought out decision.
If we as parents want our children to be accepted, loved and included as society members, we as adults MUST set an example by being inclusive of others who do not share our particular perspectives.
So, this year I pledge once again to fight fear and division in the autism community and in the disability community in general. Will you join me by focusing on the things we have in common?
1. None of us want to be the parent or a loved one of someone with a disability. Yet, here we are. We all have that in common. No one I know said, “Gee, I hope my child is born disabled.”
2. We are all being discriminated against in various ways. It takes a united front to fight discrimination. Groups experiencing discrimination cannot overcome that discrimination by breaking into factions and fighting among themselves.
3. We all want the best of everything for our children and families. We just have differing ways of achieving this and differing abilities and resources available to accomplish this outcome. Tearing each other down rather than building each other up will NOT result in the best outcomes for our children and families.
Let this be the year that more and more of us come to our senses and learn to respect each other’s perspectives, stop fighting over limited resources and accusing and blaming others for their decisions. Let this be the year we come together as a community to increase resources and seek inclusive, non-discriminatory practices for our children and for ourselves.
Resisting That “We” Versus “Them” Mentality