Happy March Dear Readers,
If anyone is paying close attention they may have noticed that there was no blog for January, and also none for February. I was going to apologize for this lack of dedication to my own advocacy and education efforts. I was going to promise to do better and perhaps explain the reasons why I was not able to meet the goals I have set for myself, and the expectations that I believe others may have for me.
But then I had a bit of an epiphany. I am always advocating for others to be unapologetically themselves, to do what they can when they can. For people to sit down if they can during a burnout, after a meltdown and recuperate; but, I seem to have left myself out of that picture.
Like many newly diagnosed people in the neurodiverse community when I finally accepted mine I felt relief in understanding what my differences sensory perception and other areas mean to me. The relief that I am not lazy, that I just need to adjust my environments to my needs. Much like a child with significant eye sight differences feels when a teacher notices that they are squinting at the board and suggests that they have their vision checked resulting in getting a proper prescription for glasses. Many people feel relief when they learn what their differences are, and how to work to over come them. The great feeling of relief with the knowledge that “I’m not lazy, I just couldn’t see the board to take notes”
I was diagnosed in Jr. High school; however, familial fear and attitudes about disabilities at that time lead me to hide my diagnosis and mask my differences to be indistinguishable from my normal developing peers in order to be a productive member of society. This lead to me not admitting to anyone that I was and still am firmly on the autism spectrum. But in becoming a professional that works with autistic children and who wants the best for them and their families I found the actually autistic movement and the neurodiversity family of advocates that have become my tribe. For several years I felt a sort of jubilant, “Now that I can see I will always get straight A’s” sort of feeling. I feel that way in my advocacy and education. I feel that way in my full time job as an early intervention speech-language pathologist. I feel that way in my personal life, with my friends, with those who are my family by blood or by choice. I feel that way in my artistic expression. That sort of “I have glasses now, I can see now, I will succeed in all areas now” feeling.
My mother used to tell me about the day she learned she could not see. She told me about the day she finally got her glasses and could see distinct leaves on trees; about how it was so indescribably cool to see the fur on her favorite cat. She told me about how she had a sudden leap in her grades in school, because she could see the board while the teacher was talking. She told me about how that difference meant that she understood and could focus on things that she never could before. She told me that she decided then and there that she would be brilliant.
But another thing my mother told me about was that after a period of elation, she also experienced a period of disappointment. Because you see even with glasses, and the ability to focus and see and pay attention, she still sometimes had a cold, or was hungry, or just found that she was better at literature than maths. She told me that she was disappointed that she was unable to always get an A. She made sure I learned that sometimes you can’t get an A even though you have remediated all of your shortcomings, even if you have focused; but, that as long as you do your best that it’s ok to get a lower grade.
I must admit here readers that I have been disappointed in myself for a bit now. Even though I work hard to bring educators, special educators, medical professionals, mental health professionals, parents, autistic adults, and others together to discuss how we can all work together and be on the same page; I still fail in that. I have lost parents that I work with to the Autism Speaks ‘martyr parent’ path. I have been introduced to ‘autism experts’ advocating for dangerous therapies and so called cures and sat through trainings and had my voice silenced by “people with degrees” who are “Autism Experts” even though I also have degrees, work experience, parental experience, and am in fact autistic myself. I have been vexed and doxed by anti-vaxers who (sometimes with threats of harm) vehemently tell me that autism is a scourge of evil caused by vaccine injury inflicted upon their poor lost children by capitalist doctors. I have been condescended to by professionals in my field. I have even been yelled at by fellow autistic adults who’s experience is different than what I have spoken about thus far, and by parents who tell me I am not as low functioning as their poor child and would not understand “real autism”. I have been told that I do not and should not speak for everyone. All of this while working a full time job, doing community outreach, working within my organization to move towards a more neurodiverse friendly approach, taking the time to research, consult, and write a blog; and, pay for web hosting, tech support, editing, translating, and any art work I need out of my own less than significant funds. This dear readers has been discouraging in the extreme.
There have been positives to my work thus far too. Parents on my caseload are exposed to choices they would not otherwise have known about. More have chosen a neurodiverse acceptance route than martyr route. I have been able to encourage professionals and colleagues to distrust dangerous therapies and cures, and that advocacy is beginning to expand beyond my direct influence. I have helped children get vaccinated by sharing significant resources with parents leaning the other way. I have also been able to reach out to other autistic adults and reach new understandings with a wider group. I have had the support of many people in my work , encouraging me to help change the narrative. This dear readers has been life changing. But even joy is an energy that is expended.
So here I am: A woman who is finally coming to terms with her neurological differences. A woman who is old enough to have people she loves and looks up to and loves start to struggle with mortality. A woman who is trying to survive in America financially in this current climate that favors the wealthy and shrinks the middle class. A woman that wants to stand up for the rights of the diverse, be that religious, gender, sexual orientation, color, economics, or ability who is lost in the swirling chaos of it all. A woman who struggles with sensory integration issues in a loud, rough, smelly world. A woman who struggles with executive disfunction.
But you know what? I am not going to be sorry that I sometimes get a C-. That happens. That is life. It’s ok for you to need to rest and get back up on your feet, and it’s ok for me to do the same.
There will be times where my war to create things are at odds to my ability to create them. In January I made 2 hats, and worked on a bag made of yarn recycled from plastic grocery bags in order to illustrate my concept for a multi-military base in conjunction with Japanese nationals coordinated effort to create an earth day event. In February, I created a presentation to share with a multidisciplinary team regarding neurodiversity, all in an effort to avoid working on a blog post that means the world to me while at the same time terrifies me.
I am working on a few things now Dear Readers, I hope to come back strong soon.