Sometimes, it seems that one of the biggest challenges that we face is that we spend so much time and energy educating everyone about what autism spectrum disorders are and are not.
Whether it's the teachers, caregivers, well-meaning family members and friends, or society as a whole, we each have our own private mission, our own private battle, to educate and to explain. We do this so that our children and their peers can live in a better, more informed, more understanding world that supports each member in a positive, nurturing manner.
Dealing with the misinformation and negative stereotypes surrounding ASD is very frustrating, time consuming and draining, but it is a battle that we each must fight so that our children can receive the support that they need.
As a result, many groups have sprung up to help parents and others who have children and loved ones with a diagnosis of ASD. As expected, most of these groups have been very helpful and supportive to those of us who have loved ones with ASD. Most ASD groups are usually founded and composed of people just like us. It's comforting to have someone to listen to our frustrations, hopes, fears and dreams when that person knows how we feel because they've "been there."
So, one would naturally expect and assume that having "been" there themselves, all of these ASD support groups would automatically portray and represent children and grown-ups with ASD in a fair, balanced and positive light. After all, while having ASD has its unique challenges, it's not like having a terminal illness or a contagious, deadly disease. Children and adults with ASD are like others in the fact that they each have individual talents, individual strengths, individual gifts - they just need some specialised attention and assistance to make full use of them.
So, when those who are ignorant go out of their way to portray those with ASD in a highly negative light, as though having ASD is some great curse akin to having the bubonic plague or leprosy in the Dark Ages, it is very hurtful. What's even worse is when these hurtful remarks come from individuals or groups that should know better. It's akin to rubbing salt in a wound when those words come from "one of our own."
Recently, in an open letter written by Susanne Wright of Autism Speaks, Wright referred to the "grave illness" of autism, and blamed a host of ills on ASD, saying it causes families to "split up," "go broke," and that families with those "afflicted" aren't really "living." Since this group claims to support ASD individuals and families, wouldn't you expect that she should know?
Of course, other ASD groups have come forward to condemn Wright's words. Some, even go so far as to suggest that those of us who have a moral compass should call for a boycott of the supporters of Autism Speaks. I am not going to tell others how to spend their money, but at the very least, as someone who has "been there," I will add my voice to others who are speaking out for our children and other loved ones with ASD. I encourage you to do the same. Living with someone with ASD has its challenges, certainly, but it also has its blessings. Blessings that are so perfect and pure that I would not trade my children, or my journey.