A Divided Reality?: Parents & Self-Advocates

You may have already read two posts on yesterday's New York Times' Motherlode parenting blog, the first entitled The Unvarnished Reality of Autism by the unnamed mother of a 5-year-old boy with Asperger's Syndrome and the second entitled Autism from the Inside Looking Out by a self-advocate, Sarah. The effect of these two concurrent posts is to highlight the divisions between parents and adults on the spectrum, between parent advocates and self-advocates, without conveying any sense of how we might meet; of how some, though not all, of our concerns intersect.

The post by the mother begins with the phrase "it's time to stop mincing words" and refers to life raising a child on the autism spectrum as difficult beyond compare:

....don’t throw your euphemisms my way. Recognize that life with my son’s Asperger’s — life anywhere on the autism spectrum — can be at least a periodic nightmare, and respect my struggle enough to allow me to call it that. Know that not everything is bad — I am blessed with many moments of joy with our often adorable and cuddly boy. We share jokes and laugh together; we play and sing and dance; he holds my hand as I sing him to sleep each night, kisses me back and tells me, “I love you, Mommy.”

Those are the times that keep my going, but also break my heart — to see what he can be, and to think his volatile autism could hold him back, could ruin everything. Because to pretend otherwise, to sugarcoat with euphemism, does not make it go away. And it doesn’t help me to help him.

In a response, Sarah writes that she "wasn’t an easy child to raise, and that [her] parents did find some things to be rather difficult" and offers a sense of how it felt to be that child. And, as she notes in addressing the other blog post:

Your blog entry represented autistic people as monsters who cause life to be a “nightmare” for those around us. We are blamed for our parents’ depression, marriage problems, and feelings of humiliation and social isolation. Perhaps that is not the intent, but that is how I interpret this mother’s words. Were I to read a similar blog entry from my own mother, I would be extremely hurt. I only hope this young boy doesn’t realize that his mother blames him for all of these things.
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We might not be the child which you expected, but we ought not be represented as monsters, or physically and emotionally hurt by those who love us, or blamed for all of our parents’ woes. Being made to feel like a freak who couldn’t handle situations the “normal” way never helped me. It just made me feel worse about myself, and less able to cope with the rather overwhelming world around me.

Please, consider that autistic people read blogs and have feelings as well. Your blog entry claims to show “the unvarnished reality of autism,” but the feelings and perceptions of actual autistic people are sadly missing from your account. We need to stop casting blame and citing “autism” (autistic people) as the cause for parents’ nightmares, and start working on constructive ways in which autistic people can feel more comfortable in the world.

I left a short comment which I'll rephrase slightly here:

Please note that not all parents of autistic children share the same perspective about autism, and the impact of autism on their lives.

While things are not easy—and my twelve year old son, Charlie, is on the moderate to severe end of the autism spectrum—for my husband, Jim Fisher, and me, life raising our son has been a journey that we would not have wanted to have missed.

Not everyone will agree, but I do think it's possible to find some common ground as articulated in the call for an Autism Corps. My 12-year-old just keeps getting older and bigger and he'll be an adult on the autism spectrum before too long. There are many differences between the experience of my son and that of, for instance, an adult with Asperger's but there are many commonalities. There is a shared need for more understanding and compassion from society, that's for sure, and there is also a need for supports and options in, for instance, education, jobs, and housing.

So often, in the rush to explain "what it's really like"---our own private "unvarnished reality"---we accentuate the differences and the divisions. We forget how helpful it might be to imagine ourselves in each other's shoes.

I for one wish to give it a try.