Saturday, September 9, 2017

Why I became a Self Advocate for Autism

If you have been reading and following my blog posts, you might wonder what made me want to become active in the autism community.    The answer is that there are multiple reasons instead of one specific moment in my life.  I know there are many self advocates out there that are already doing a great job speaking out on behalf of those who haven't yet found  their voice and continue to expand our knowledge base on this complex condition.  I wanted to add my insights, experiences and thoughts to the autism community.  Autism is a very misunderstood condition and also heavily stigmatized in our society.  I feel that the more autistic voices that are out there speaking, the less likely we are pushed aside in the autism debate and that we are treated respectfully in society.

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.
 


1 comment:

  1. Beautifully written Christine. You should be proud of who you grow up to be as a young woman now. You're a great advocate for all the kids and adult with a different ability. For me it was never a disability. I see my son who is 10 now and see him as perfectly complete and he completes me. I learned more from him than from anybody else who entered my life. And I still learn and grow with him. I try to give him a voice wherever he goes and I will never give up. The first thing I urge to be changed is that there should be a seat next to all typical peers at schools for each kid with a different ability.
    There should be accommodations for each one of them. And even the core curriculum should be modified in a way that accommodates the learning style of each one of them. I think the alternate curriculum is a disgrace and it is degrading. The alternate should be tossed away for good.
    When I see the kids it makes my heart ache.
    I see them and I know how much they understand and how much they know, but they can't tell anyone.
    We have to change the mentality of Special Education and know that the children will be side by side in the classroom, there would be less angst and time wasted in finding the golden ticket. The conversation should be they are going to be in that class, in that seat, because there's no other class, what are we going to do to make it work.
    Not segregate them and put them in Special Education classes. For these kids segregation and discrimination starts in elementary schools, and whoever wants to make a change should start at the roots where everything starts and everything is build upon. A tree will grow strong only if the root is strong.
    I'm with you in this fight and I pray that one day all non- verbal autistic people will have the opportunity to learn communication and show the world, that lack of speech, is not the same as lack of understanding.

    Just be
    Bita

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