Hopefully, this post can serve as an introduction to me and to my autism. This blog is intended mainly to revolve around topics relating to autism, autistic people and my experiences as an autistic person. However, my other identities might come up sometimes. They might be interrelated, or my autism might have an affect on another identity or issue in my life. For example, if I post about a college course and how aspects of my autism affect studying or the like, my identity as a college student will come into play. For that reason, I believe an introduction is necessary. And also because it’s great to see a whole person beneath words.
I’m Alaina. I am 21 years old and currently a senior at a state university in Massachusetts studying English and Communications. I’m an Honors student. I’m bisexual and in a committed relationship of over 5 years with my girlfriend, Macey, who may come up in personal anecdotes about my autism. I identify as female but my gender identity and expression are interesting to say the least. I grew up north of Boston and I live with my dad and my fat cat, Winston Michael Leary, lovingly known as Fat Winnie. I name everything I own, including giving my cats middle names and naming my electronic devices and such. I am a rape and domestic abuse survivor and I speak openly about rape culture. I have also been in recovery from self harm and an eating disorder – anorexia, purging subtype – for two years this September 1st. I am an ENFP and a Pisces, both of which I think describe me absolutely perfectly.
Now, for my “autism story.” For all its faults (haha, pun), one of my favorite parts of the novel The Fault in Our Stars by John Green is when Augustus asks Hazel what her story is and she launches into her cancer story. This is so common within subgroups of identities and shared experiences that sometimes, I feel as though I’m not a whole person known as Alaina. Sometimes, in my discussions with my therapist, I feel exclusively like a rape and abuse survivor. Sometimes, when I’m at the Queer Straight Alliance, I forget I’m anything but bisexual. When I’m reading my favorite autistic people’s blogs and reading the Autistic Self Advocacy Network’s website I feel like I’m solely an autistic person. It’s hard to cohesively see how all my identities, how all my life experiences, how all my connections to people and events come together into the person I am.
As a child, I was easily recognizable as “the weird kid.” A lot of autistic people can agree with me here – whether or not we knew we were autistic as kids, or knew what that meant, most of us knew we didn’t ‘just quite fit in.’ My special interests, rigid routines, limited speech, dyspraxia and almost constant stimming (self-stimulation for autism acceptance newbies) often set me apart from my peers. I was that kid who was always flapping her hands and feet in class, couldn’t sit still, had a hard time talking and making sense, couldn’t write in cursive, had to be put in special classes, had to take occupational and physical therapy from the time I was in elementary school. I remember feeling that way: that there was nothing normal about me, no way to ‘fix’ it, and that I was unlikely to ever succeed at the things ‘normal kids’ could do so easily–hold a pencil correctly, walk up the stairs one foot at a time, ride a bicycle, socialize, stay still in class.
Autism was talked about, and I vaguely remember diagnoses being thrown around, but unfortunately a majority of that is lost. Almost all of my childhood records from grades 5 and lower were lost when I transferred to a new middle school in a city far away and the place that held my records had some sort of bizarre flood. There’s no record of any of it, of my therapy, or of professionals that met with me. There’s barely a vaccination record. Most of what I have is a few school records that were given freely to me by my high school when I graduated: some progress reports, some assignments I turned in, some notes on my reading comprehension level.
I didn’t know what autism was even though I always knew–always remembered–that I had it. I didn’t think about it. In fact, much of my awareness of autism, despite being an actual autistic person, was the mainstream media perspective. I thought of kids who don’t speak much, who flap their hands and talk about one subject for hours if they do talk, and parents who cried because their child was ‘wrong.’ I thought that maybe my autism had been ‘fixed’ when my mom passed away and I moved to a new city. I had a chance to be a part of the Honors classes in middle school where before I was in a special education program with tutors and paraprofessionals. I remember thinking, in sixth grade, “Wow, I guess I was just dumb before because I wasn’t trying, and now I must be smart.”
There’s no blame on my parents here. Perhaps they should have been more aware of what being autistic means, but I think they were actually outside the norm when it comes to dealing with their autistic child. My parents didn’t subject me to ABA (Applied Behaviorial Analysis) or hope for a cure or try to fix me. They didn’t tell me to stop stimming or to sit on my hands. They didn’t stop me from telling stories that were hours, days, and even weeks long; they listened to me go on and on about a particular subject, with my eyes lost somewhere and stimming wildly the whole time. Other people tried to tell my parents that I needed fixing. Educators, teachers, counselors, other parents, and even my grandmother suggested that my parents make me sit on my hands when I talked to keep me from stimming. They said my parents should discourage me from ‘boring’ other people with my incessant talking about my special interests. They said my parents should force me to hold my pencils and utensils correctly; that I should be forced to ride a bike even though I fell off every time because of my dyspraxia and poor coordination/balance.
I wish I could say that this means I was free from ableism, free from abuse and free from feeling like I had to change and become ‘fixed.’ My parents and the vast majority of my family didn’t try to change me, but everyone else did. There were teachers who would punish me for stimming in class and for using the bathroom frequently (both because I actually had to and because I wanted to go somewhere safe to stim because I couldn’t in the classroom). I once peed my pants in class in front of everyone because my teacher limited me to one bathroom break a day–this was about an 8 hour class day in the same room. I was held back from attending a class field trip because I stimmed in class, seemed to be ‘not paying attention,’ and had a meltdown when I was kept from stimming and using the bathroom. I was made to sit on my hands by many teachers, and it got to the point where the other kids would demonize my behavior too. In gym class, during the days of dodgeball, I would hide in the corner and turn to face the wall, stimming by myself while other students pelted me with balls until they got bored of my non-reaction.
Those are the facets of my story I wish I didn’t have to share, because I wish they didn’t exist. They are vulnerabilities within myself, because I’m now 21 years old and I’m afraid to tell people I write stories because I was bullied mercilessly for it. I don’t even enjoy discussing it with other writer friends or in creative writing classes. I’m an adult who is afraid of authority figures sometimes, and wary that my teachers will hate me, because even though from sixth grade on I’ve been treated like a wonderful student, a part of me still remembers the abuse from my elementary years. I’m a senior in college and I won’t share my special interests with very many people freely and willingly unless I’ve had at least one alcoholic beverage, and if I do choose to share those interests even with those closest to me, a small part of me turns red, turns embarrassed, and looks at the ground because I remember people catcalling horrible things at me in the school hallways because of my expressed interests.
But I want to share them. I want to share my vulnerability in the hopes that it will help spread acceptance of autism. We don’t really need ‘awareness’ anymore. Most people are aware of autism. They think, “Autism Speaks. Little white boys who don’t talk, like trains, flap their hands and grow up to be savants.” They think, “Sheldon Cooper.” They think puzzle pieces. They don’t think about autistic adults or even autistic teenagers. They don’t think that maybe we don’t need a ‘cure’ for autism, but more understanding of autism. There are burdens to being autistic, yes, because it is a disability. But it’s also not cancer. It’s not a disease separate from us that has invaded us and needs removal to save us. Autism is what makes me who I am, in all the great and wonderful and cumbersome and annoying ways that it does. I wouldn’t be the person I am without it, and what I need is for ableist ideas to change, not a cure. I need people to listen to the stories of autistic people and hear our word for it: we can speak, whether with words, text, or in some other hybrid form, and we have voices that deserve attention.
These are our stories.