I have been head-down into the land of research for over two weeks. I don’t say this lightly. Every waking second of free time I’ve had has been spent learning the world of Autism, also known as ASD. (Autistic Spectrum Disorder) I’ve read every article I can get my hands on, I’ve listened to countless podcasts, watched/listened to YouTube videos of professors, parents, and even adults with ASD teaching/advocating/sharing their information and stories. I’ve listened to doctors give lectures. I’ve devoured everything I can find (including the wonderful HBO movie) on Temple Grandin - her Ted talks have been favorites of mine. I’ve joined groups on Facebook, messaged with prominent ASD advocates on Instagram, scoured message boards and Reddit for experiences/intel, reconnected with friends in the know ... It’s been a non stop stream of information. I even managed to read a (short) book about Aspergers and girls - which is really saying something when you consider the chaos around me. It’s been a non stop information highway, and I’ve been pedal to the metal.
My brain is booming with new knowledge. I was surprised to learn how (regularly) overlooked girls are in the world of ASD. I suspect (I mean, I’d rather say that I know) that Navy falls into the category of ASD-1 (formerly known as Aspergers). I don’t actually know this to be true, but there’s not been one thing I’ve learned that has lead me to believe otherwise. In fact the more I read, the more the dots connect. Problem is, most of the data (read: all) used in the diagnostic criteria is based on the behavior and study of ASD boys. For reasons that I don’t fully understand (Yet! Although how we socialize girls vs boys is a common theme I’ve read) the behaviors that girls with ASD manifest can vary greatly from those of boys. Stranger yet - they often contradict the known behaviors of boys. An example of this is eye contact. Boys with ASD commonly struggle with eye contact, whereas girls with ASD might not. Important note: Autism is a spectrum. There’s a quote I’ve heard a few times. “If you’ve met one person with autism ... then you’ve met one person with autism.” The behaviors and symptoms are different amongst each individual. Because the diagnostic criteria is based so heavily on the behavior of boys, many, many girls go undiagnosed. There are women in their 60s and beyond who are just now getting diagnosed. Can you imagine this? I am beside myself concerned that Navy will experience this kind of delayed diagnosis - her behaviors are nuanced and while I can predict them like clockwork, she is gifted at “masking” in front of others. I worry that because she doesn’t fit a stereotype, or because she’s Autism Lite (thanks, Burchette for that term) she won’t be Autistic “enough” to get the help she so desperately needs.
Navy struggles, and by proxy, so do we. (Our family on a whole.)
I often tiptoe around exposing our area of difficulty ... Mom guilt kicks in and I hate to write things that focus on the negative. After all, this is my child - my heart. And even with all the struggles, I am grateful beyond measure to be this gal’s Mom. But - we do struggle. Daily ... multiple times daily. It’s taxing. And her struggle is the driving force behind my pursuit of a diagnosis.
I’m not an arrogant person. I’m certainly not the kind of person who thinks I know more than other people, let alone doctors. But I am vigilant when I’m determined. And nothing cultivates determination in a mother more than seeing her child suffer. With this in mind I can say conclusively that I know my child BEST. With the Navy knowledge I have I can easily apply what I’ve learned and confidently say that my girl has Aspergers. What continues to unhinge me is the fact that the doctor, who does not know what I know, may not agree. This concern fuels me to dive deeper and deeper into my research, which only recirculates into what I already believe to be true: I have an autistic daughter, and we desperately need help.
I’ve had many people reach out to me and say kind things. I’ve been applauded for being an advocate. I’ve been told that Navy is so lucky that she has me as a Mom. Please know, I’m not these things. I am struggling right alongside of her. All the research in the world has not equipped me in the least in knowing how to handle outbursts, or meltdowns. Too many days have included me stomping or shouting or gasping or drowning or having a tantrum of my own. Even as I write this I am hiding away in the basement, doors locked - overstimulated from a terrible day of unruly behavior. I am not a champion mother. I am a fucking frazzled mess and I feel awful because I know that what I’m doing is simply not enough.
I describe the daily stress as feeling as though I’m jagged, or “covered in glass” - every incident is so sharp, and hits a nerve. I realize this is very likely Navy’s experience, too.
I spent much of today reading stories from adult women with Aspergers. They were very critical of mothers of children with ASD, and it struck a nerve. I do not want to be the kind of “Martyr Mommy” they spoke so poorly of. Navy is not broken, she is not bad or wrong or anything less than you or I. I don’t want to “problem solve” her behavior ... because she’s not a problem. I do seek solutions and ways to communicate expectations, boundaries, etc. Just yesterday she came inches from death - I’d like to be able to explain to her that you can’t run out into streets and in front of moving cars; that stop (especially when screeched from your horrified mother) means stop. I hope that when she grows up and (possibly) reads my writing she’ll know that all I ever was looking for was a better and easier way of life - for her. I know I’m not nailing it right now, glass shards and all, but I’d sure like to try.