I’m traveling and haven’t had time to blog. But a couple of comments came in on the last post about How We Discuss Our Children that made me think a bit more about all of this.
When my daughter was first diagnosed we were told a great many things that frightened us as well as some things that were very encouraging, but when those, seemingly “good” things did not come to pass, we became even more frightened. In part because it became clear no one actually knew what they were talking about and coupled with that realization was the idea that if they didn’t know what they were talking about, how were we going to help our child? Add to that our expectations, no one talked with us about any “positive” aspects of the diagnosis, nor did anyone suggest anything that sounded remotely “good”. All of this was done with good intentions, lots of well-meaning advice, but all of it came from non autistic people who were operating under the assumption that our neurology was the gold standard and one that everyone should aspire to, as if that were possible.
Autism was framed in the “disease” model with people alluding to cancer as an appropriate analogy. As I have family who have both died and survived cancer, and have witnessed what chemotherapy does to a person, both when it works and does not, this was particularly awful as I took it literally and began to see any and all “treatments” as a kind of “chemotherapy”. I even consoled myself with the idea that this “risky” treatment would all be worth it, if it “saved my child’s life”. I spoke of it in this way and thought of autism as “life threatening” because I could not imagine a life without language, friendships, empathy, etc and this was what we were being told autism was. This is an incredibly dangerous idea for any of us to engage in and is why I find it incredibly unethical for organizations and public figures to talk about autism and Autistic people in this way.
Now add to this the financial toll of all those unverified “treatments”, the appointments, dealing with schools and the general anxieties that come with parenting on too little sleep and too much caffeine, along with a parent who has expectations that something she does will “save her child’s life”, and that’s a pretty great recipe for discontent, depression, anxiety and upset. Particularly when it becomes increasingly clear that there is little available that will actually prove helpful to our kids.
Think of how different it would be if our pediatrician was a non-speaking Autistic person and our non autistic older child had a couple of Autistic teachers and another kid’s parent was Autistic and one of our closest friends happened to be Autistic and Autistic kids were not segregated out of schools and work places accommodated their neurology and made it easier for Autistic people to be among us. Part of that initial fear we parents often have is because we have never met anyone who is Autistic. All the information we then receive is taken as fact and not questioned immediately.
So yeah, there are things that really do need to be addressed and changed because the stress of parenting is massively exacerbated by society’s use of the medical model and because of the way we have segregated those who are Autistic. It isn’t that a child who has all kinds of medical issues and co-occurring diagnoses will not be cause for concern, it is that to add to these concerns the – oh-and-by-the-way, autism-is-an-epidemic-that-is-analogous-to-cancer-try-anything-and-everything-to-erradicate-it, is increasing everyone’s pain and suffering, including our children’s.
Emma's Hope Book 