A Dispatch From The Autism Wars: You Don't Have To Be Wrong For Me To Be Right

Recently I read a blog post on Wellsphere entitled, "I am not an Autism Mom". Michelle, the article's author, takes issue with parents referring to themselves as Autism Moms. This, she says, takes the focus off the person with Autism and puts it on the mother. Unless the mother has Autism herself it becomes a title: " Autism Mom. Two words put together to create a phrase, a title – and that’s what it is - that I really don’t like." I can't help to feel the sting of judgement - I mean, have you seen the title of my blog? Even so, I am grateful to Michelle for her post because it prompted some soul searching on my part into the complexity that underlies the title, "Autism Mom".

It feels strange to hear someone say Autism has nothing to do with me. Raising a special needs child, I think, can be all-consuming. Maybe there are moms out there who can be routinely beat on by their Autistic child and think, "none of this is about me, only about the child", but not me.

We are caregivers to persons with significant developmental disabilities. And, there have been volumes written about the necessity for caregivers to take care of themselves, so that they don't get burned out. To imply focus should never be on the parent regarding Autism, I just don't see it. My life and Autism are enmeshed. Though I don't have Autism, I live and breath it nevertheless. I am an Autism Mom.

It is only a problem, then, if it becomes only or mostly about the mom. That does not happen with me, but I must be vigilant because emotions can be tricky. At times this job requires me to draw on tremendous reserves of strength. Those reserves must be in place when I need to call upon them. This is why I have a blog: it is about me here so it doesn't become so at home. Here I can dream, scheme, imagine, vent, plan and, at the end of the day my son is the better for it, because his mom is too. I am then able to put my stuff aside and be present for him, no matter what.

Helping my son live his highest potential requires that I be an emotionally healthy person. And, I think it is quite healthy to carve out little spaces where it is about me. Another of those spaces is my identity as an Autism Mom. With that said, I fully support anyone who eschews that moniker in favor of another, or none at all, for that matter. I think we should each choose whichever processes, interpretations, values, communities, and treatments help us be the best mothers to our children - and give each other room to do the same. Simply put, our needs are not necessarily the same, nor should they be.

The name Autism Mom reflects a culture and network of mutual support built by parents, across decades, to help their Autistic children thrive. Autism Mom does not always translate into unified beliefs about the origin of Autism and whether or not that condition should be cured, or even treated. In fact, disagreements between the two camps within Autism Moms can get downright ugly. For instance, Neurodiversity Moms believe Autism is a normal genetic variant, so the children should be respected as they are, without curing their condition. Biomedical Autism Moms, on the other hand, say their children have been injured and do everything possible to restore them to health, with curing Autism as a top priority. Each side feels judged by the other. For example, ND moms say the best way to love the children is to respect them for who they are, while Biomedical Moms question why anyone who loves their child wouldn't seek a cure, which they see as offering the best chance for an independent life. Can we quit this? We all love our children, already!

Though I identify mainly with the Biomedical Moms, I do appreciate some points ND Moms make. They remind us that our children are who they are and and that we must not send the message that they are broken people in need of fixing. Having grown up with two undiagnosed neuro-developmental conditions myself, ADHD and Sensory Processing Disorder, I appreciate the concerns about basic respect. Whether or not adults intended this, the message sent was clear: I should be some way other than how I was. Even when this is not explicitly stated, the children know. They just do. At the same time, I would have welcomed any intervention, biomedical or educational, that could have lifted me out of the most limiting aspects of those conditions - and I still do. Why should I want any less for my son?

I've often wondered on the dynamics that influence whether one ultimately becomes a Biomedical Mom or a Neurodiversity Mom. When you hear the two sides argue about what Autism is and is not you'd assume causation must be the same for every child, or why else would the charge "you just don't get it" be so often bandied between them. Yet, science finds there is no single cause , that there are likely many Autisms, and that only 15% of cases are attributable to straight genetic causes. Could what we are not getting, then, simply be each other's story?

Each family has its own unique story about how Autism found them. Some had children who seemed to be different from birth, while others had a period of normal development only to lose it all. While some children with Autism are high functioning and healthy, others suffer medical illnesses such as immune dysfunction, seizure disorders, and gastrointestinal abnormalities. Clearly each case is unique. Even among regressive cohorts the age of onset can vary.

Each of our impressions of what Autism is will be colored by our own experience of it. Generally speaking, Biomedical Autism Moms have the children who had periods of normal development and regressed, reportedly after a vaccine, and came to develop comorbid health problems. Of course these mothers would want to do whatever possible to heal the bodies of their formerly healthy children. I have noticed, at least in my interactions with ND's, that the majority, but not necessarily all, of their children are among those labeled high functioning and without the debilitating health issues. Could ND Moms come to their conclusions about Autism, in part, because their children, generally speaking, have different forms of that condition from the biomedical kids? Now, I'm not saying there are no Biomedical Moms with children who showed Autistic traits from birth, nor am I saying no ND Moms have severely Autistic children - I simply refer to patterns within the majority.

Why are we so unwilling to consider the stories of others when those opinions on Autism differ from our own? Have our own experiences and reading only information that backs up our pre-conceived ideas so convinced us that there is nothing new to learn? Instead, why don't we take a page from the scientists and humbly acknowledge that there are many Autisms. If we refuse to honor that another's perspective of Autism may be different from our own, we risk not having merely opinions, but a rigid ideology.

All parents of Autistic children, no matter on what side of this divide they may find themselves, want one thing in common: a world that accepts and appreciates the diversity our children add to it. Tolerance of diversity, though, not only refers to like things race, religion, ethnicity, ability or disability. There is also the tolerance of diversity in thought and opinions.

Should we expect a mother, whose child was talking and interacting only to slip into permanent isolation, to not believe something has gone horribly, horribly wrong? And, should we be all that surprised when another mother, whose child showed Autistic traits since birth, thinks her boy is perfect as is and does not want him cured? To borrow a saying much loved by many who hail from liberal religious traditions: "You don't have to be wrong for me to be right."