Perhaps the perfect place to start explaining my interest in becoming active in the autism community is my own experience living with the disorder. I was diagnosed in preschool but it was six years later when I was in fifth grade when I finally learned about what autism was. I began to notice that my peers were changing in terms of developing more mature interests whilst I stayed the same. As I entered middle school, the feeling of knowing I was different was excacerbated. The teenage years can be very complicated for anyone, but it was a magnified experience for me. I noticed that my peers in middle school were so interested in fitting in and being part of a large social group. I found that to be very perplexing and did not understand why middle schoolers became so interested on the approval of others and the "coolness" factor. My autism made me oblivious to the shallowness of middle school culture.
Like so many other people who first learn about autism, I decided to research what it was. Unfortunately, in the early to mid 2000's there was a lot of negative information about autism as a set of deficits. There were no active autistic-runned or neurodiverse organizations that were in existence back then. A lot of information about the condition was written by neurotypical parents and professionals. As a consequence of these deficit based narratives about autism, my self esteem and self confidence took a steep dive. I felt that everything about me (my habits, behaviors and interests) was flawed and needed to be fixed. Although the people around me had the best of intentions of trying to help me, they sometimes did things that I perceived as "harmful." A few examples of this was the ABA agency that tried to extinguish my jumping in middle school, to this article on Newsweek magazine in which my mom and I were featured that discusses intimate details of how I struggled to develop teen interests as well as being sent away to a summer a life skills bootcamp at my therapist's suggestion during the summer of my senior year of high school that felt like being placed under a microscope in terms of my abilities. These experiences in my life as well as the medical model of autism that I grew up with made me felt marginalized growing up. I felt that I did not fit in anywhere nor fit in the tight categories or boxes" that society has made for the various labels that inhabit our identities.
When I entered adulthood, the stigmatization of autism and my strong urge to become an advocate for autism was more evident due to the relative absence of autistic voices in this age group. Again, this is tied to the fact that up until recently, the discussion on autism was dominated by people who have second hand accounts on the disorder. As a result of a lack of adequate resources for autistic adults, I had to navigate the first few years out of high school on my own. That was perhaps the hardest time of my life to navigate. To this day, I still find it hard to live in a society built for neurotypicals . To make matters worse, there continues to be an erasure of adult autistics by others who continue to infantilize the disorder by referring to children when writing about the disorder. My experience as a teenager as well as my current experience of being a young adult with autism has lit the flame of being interested in social justice for people with autism.
I became an autism advocate because I don't want any young person with autism to grow up with society telling them they are broken and to enter adulthood feeling insecure about their identity. I suffered from low self confidence as a result of being aware of the destructive messages about my disability that I was exposed to growing up and to this day I am still working to overcome. I am also sick and tired of the autism conversation to be dominated by people who actually don't live with the condition. I am tired of all the negative stereotypes that plagues autistic people (we lack empathy/considerate of other people's feelings). I wanted to add my voice to the growing number of autistic voices, because I feel there are a lot of topics about autism that are ignored or not given much attention in the wider community. I want the world to know that adults with autism do exist and that we deserve to have supports and accommodations too. It is not only autistic adults that are virtually ignored, but also autistics who live with another marginalized identity( a person of color, female, and LGBT) who are pushed to the sidelines on the autism conversation. I wanted to give voice to the voiceless or the underdogs in the autism community
This is why I wrote a autobiography about my experience, started a blog and present to groups about living with autism. I wanted to give others (especially neurotypicals) a perspective of what it's like waking up everyday and having to face a world that was not built for you and that refuses to accommodate people with disabilities. I want to challenge existing paradigms about autism such as age appropriate interests and functioning labels. Me and other autistic self advocates are showing the world that normal is "just a setting on a washing machine."
|Image: Me with Agnes, Margo and Edith from Despicable Me taken on a trip to Universal Studios for my 25th Birthday.|