I read an article this morning that kind of upset me. I will link to it, but I am not sure what to say. The author has valid points. Her history is hers and it shouldn’t have been this way for her. But, the generalization that all “Autism Moms” are the way her mother was, is pretty offensive.
First, I don’t like the phrase “Autism Mom”. I am just a mom and prior to reading this article, I don’t know that I had ever heard anyone use the term – though I have seen a meme or two. My son has a name and he is not Autism. He is Mickey and he is on the Autism spectrum. I don’t care so much about the phrasing “Autistic” or child with Autism, and Mickey uses them both interchangeably, as do I. I am not special nor is it about me. Mickey has to live with his Autism day in and day out. My only job (other than to love/feed/shelter/clothe him) is to try to help him obtain the skills he needs to do that. Am I doing everything right? Doubtful. Have I made mistakes? Absolutely. Am I doing anything right? I hope so. But, it isn’t about me. I am not special because my beautiful boy in on the spectrum.
Did I sacrifice my life for him? No. Would I? Yes and without complaint. My life is what it is because of my kids – both of them – one with Autism and one without. I haven’t sacrificed anything of any importance to me (other than maybe sleep) and that was the deal I made when I chose to become a parent. That would be true if Mickey was on the spectrum or not. Is it somewhat harder to parent Mickey than your typical child? Yes. But it is also more rewarding when he accomplishes something that he has struggled with. Does he have approximately 20 times more appointments (therapists/Doctors/specialists) than his sister? Yes. Does Mickey know that he is harder to teach or parent with than a typical child? Yes, he does. He is fully aware that he has some challenges and that makes things harder for him and sometimes the people around him.
I do not want to discount this woman’s past. Her mother obviously made her feel this way. The words “I sacrificed my life for you” should never have been uttered along with several of the others. They are painful and cruel and abusive. But, when I look at the picture with all of the phrases that hurt her, I stopped to think. Have I ever asked Mickey to look in my eyes? Yes (he doesn’t, he looks at my face though so that I know I have his attention and that is what we have taught him to do). Have I ever asked him to stop moving so he could focus on what I was saying? Yes. So, maybe someday he writes a similar article about me. I don’t consider those phrases alone to be abusive though.
I get frustrated and I vent to my mom, my best friend or my therapist. But my best friend also vents to me about her NT children. But, it is important to note that I don’t think it is about me at all. Sometimes I am venting about Minnie, some days it is Mickey and some days it is the two f them and their incessant arguing. Sometimes we are enjoying a particular quirk, sometimes it is brainstorming ideas on how to deal with a new concerning behavior. I am part of two support groups and I don’t ever see other parents taking this line either. I see parents who are frustrated or desperate to help their child. I see parents who are burned out from dealing with the frustrating aspects of Autism 24/7 – and deny it or not, there are frustrations for the caregivers. I also see parents celebrating when their child eats a food that they couldn’t before, or ties a shoe or has an excellent day at school. I don’t think any of us think it is about us. We are celebrating our child’s accomplishment or lamenting a struggle or trying to find ways to help our child through a situation. I think most of us are just doing the best we can to help our children.
My son is not broken and I do not want to fix him. He is not less than. I do not resent him in any way. I wake up every morning grateful that I have both of my children. Do I wish he didn’t have Autism? That is a tricky question, but my answer is no. What I wish is that things were a little easier for him. That every single task that most of take for granted didn’t have to be some damn complicated for him. I wish he could make friends easily, that his perseverations didn’t sometimes prevent him from sleeping and being able to do school work or enjoy anything else and that he could control his frustration so that he didn’t have full blow anxiety attacks. I don’t wish that he was like everyone else. I don’t wish away the quirks and thought processes that make him awesome. And he is awesome.
That felt like rambling, but when an article starts with “You may have noticed I have unofficially declared war on Autism Mom’s™”, I had to look further. Am I an “Autism Mom” that has been declared war on? Maybe, but I will not use that term to describe myself because I am just a mom – a mom who has a child with Autism. Because this woman’s mother is nothing like the mothers of children with Autism that I know. I think this has little to do with an Autism Mom and much more to do with an abusive narcissistic mother who made her daughter feel flawed and less than. Her mother used her daughter’s Autism to make it about her and to make her daughter feel like a burden. And that is heart breaking. But that is crappy abusive parenting. Period.