I just read a blog post by another mother raising a child with autism who confessed to regretting trying to "cure" her child's autism. While she certainly is entitled to her own feelings, I just don't share them. My husband and I haven't spent the last almost 12 years trying to "cure" our son's autism. We've spent that time trying to find needed medical care, therapies, educational supports and services for our son and will continue to do so until he is a self sufficient, self supporting adult who no longer needs our support and guidance. We don't like the way having autism leaves our son in pain and limits our son's ability to interact with the world and therefore limits his opportunities. We don't like the way it has affected and limited our lives either and if we had a choice it certainly wouldn't be for our son to be chronically in pain, unpredictably defensive toward others (especially us), unable to effectively communicate his needs let alone complex thoughts and with no way yet in sight for much needed relief. When my husband said last night that he "hates autism," he spoke for both of us. If our son had cancer, diabetes, epilepsy (as of a few weeks ago he now has an official diagnosis), HIV, polio, cerebral palsy, was deaf, blind or had any other condition that severely limited his life, we'd hate that too. We understand that our son's autism is unique to him and that Autistics (as they prefer to be addressed) who can effectively communicate their thoughts to the rest of us celebrate their biodiversity and embrace their differences. To them we say "that is your right" just as it is our right to hate our son's manifestation of autism for what it does to our wonderful, amazing child.
So, while we recognize Autistics' right to their opinions and their right to speak for themselves and we even agree that some national and local autism organizations patronize Autistics rather than empowering them to be self advocates who are in charge of their own lives as much as they are able, my husband and I will continue hating the autism in our house. We will continue finding needed medical care, therapies, educational supports and services for our son while empowering him to advocate for himself as much as he is able until he is a self sufficient, self supporting adult who no longer needs our support and guidance. We readily admit that we may never strike that perfect balance between being supportive and being protective (we're parents), but it won't be for lack of love, good intentions (yes, I know all about the road to hell) and trying. We'll also continue supporting those patronizing autism organizations that support autism research because our son desperately needs relief from pain and from the limitations his manifestation of autism places on his life. Those organizations certainly are not perfect, but like us, they are trying to help our son with their research and right now they are all we've got to help find our son much needed relief.
On Sunday, as we enjoy our time at Wendy's, my husband and I will continue doing our best to be the parents our son needs us to be just as we've done since the day we discovered I was pregnant with him. This is the life that chose us and each and every day we are grateful for the privilege of being our son's parents. It remains a wonderful world especially in all its challenge, complexity, confusion and messiness.
