Independence anxiety and the role of Interdependence

In this post,  I am going to talk about one topic that is very personal and brings me angst.  It is about being independent.  Now from reading this post, you might think what is wrong with being independent.  After all being independent brings a lot of freedoms and you don't have to worry about relying on others as much.  If you ask any of my friends, they enjoy the independent lifestyle and it is a goal that everyone in society strives for.  In fact, in a number of autism books, experts stress the importance in striving for self sufficiency.  But does anyone understand the amount of ambivalence and anxiety that some people on the spectrum  have about independence? For years, the thought of independence and having increased demands placed on me has caused me a lot of anxiety.  In middle school, no one could bring up the word "independence" to me.  Back then, it would cause me to get so anxious that I would throw a meltdown.  Yet, it was highly stressed by my support people and it was a goal engraved in all my school IEPs. For example, in order to be prepared for college, I had to fade my aide which brought a whole lot of "independence anxiety" (a separate blog post on this shortly).  Let me share why being independent causes my stomach to tighten up.  The world is so unpredictable to a person like me.  To ask me to navigate this world by myself  without the security and the comfort of others is very scary since the outside world is not familiar with autism and would less likely be sympathetic to my thought processes of how I see the world.   I know that it is important to go out of the comfort zone and if people want to take you seriously, having independence skills is important but understand that there is a lot of unpredictability that is associated with being self sufficient.
So what is the solution of how I resolved my angst of being independent: The concept of interdependence.  I first heard about this concept when I attended a conference by a therapist who specializes in RDI.  He stressed that too many experts stress the concept of "independence" but in reality we should stress the concept of interdependence.  If you don't know what interdependence is, it is based in the principle of helping each other and that all humans (both disabled and nondisabled alike) are reliant on others to help them.  Sometimes in the autism world, we forget this principle of interconnectedness of human beings when we try to push independence on children and adults on the spectrum.  The concept of interdependence helped resolved some of my anxiety about independence (although not all) since it makes me realize that I am not alone on my journey.  I know not everyone on the spectrum shares my angst of being independent but I want to share my perspective on the matter in case there are others on the spectrum who face the same issue.

Autism, neurodiversity and why we can't make blanket statements

There has been a lot of controversy regarding if we should embrace the concept of neurodiversity when it comes to autism.  On the one hand, neurodiversity is a great idea.  I believe people with autism have unique gifts and talents that  should be embraced and deserve to be treated with dignity and respect in human society.  Throughout my adolescence,  I always thought society viewed autism as a disease because of the false assumption that vaccines are the cause of autism.  It also didn't help that there were some pro-cure organizations that helped perpetrated the attitude that autism is something to fear. This is why there has been a lot of money that is being spent on research looking at the cause of autism with the possibility of finding a cure.  The problem of  looking at autism as a disease rather than a difference is that it perpetuates the view that ALL autistic individuals are" broken" and incapable which has resulted in negative stereotypes about the condition (e.g. "people with autism lack empathy).  Growing up, I became aware of these negative stereotypes about autism in the books I read that were written by parents and professionals and also on the media.  The way that these clients or children were depicted in these books was negative and the format was framed as a instruction manual in a way that can be applied to all people with autism.   Negative stereotypes about autism are perpetuated by the media by interviewing families who's children are more severely impacted by highlighting how autism"has taken their child" away from them".  All of these factors combined created a view in which autism is something that needs to be combated.  Unfortunately, this attitude angers a lot of autistic self advocates since they believe that autism is a part of who they are and not something that should be normalized or cured.   We want society  to see us as people with feelings with different strengths and weaknesses.  This is where neurodiversity comes in.  Self-advocates like myself like the term neurodiversity because it humanizes people on the autism spectrum and recognizes diversity and embracing different ways of thinking.  The embacing view of neurodiversity was not stressed enough when I was younger and I am glad that people are starting to embrace autism today.

However, then there are those on the autism spectrum who are severely impacted who are self injurous, engage in fecal smearing , have seizures and other activities that makes life more difficult for themselves and their families.   In this case, one is in a difficult position of embracing autism since it causes so much pain for the individual and their family members who have to take care of them.  This is why parents in this situation are resentful of self advocates since they can't understand where they are coming from when they want to" cure autism."  This is why there is such a divide in the autism community because there are those who don't want to cure autism and who believe it should be embraced and then there are those who want to cure autism because it is the reason why their child/ren are suffering. The problem is that advocates on both sides make blanket statements thnking that their opinion is reflective to the lives of all people with autism.  They miss the fact that people with autism are all different.  There is the saying in the autism community "if you meet one person with autism you've met one person with autism."  We all need to be sympathetic to other people's situation or viewpoints.  This means parents of more severely impacted children on the spectrum need to be mindful that when they say "autism should be cured"can hurt the feelings of competent self advocates who can speak out for themselves and self-advocates need to understand the challenges and hardships families face when dealing with a relative that is self-injurous and is aggressive towards others.   This is my take on this issue and like I said earlier on this post I embrace neurodiversity but am sympathetic to parents who have hard lives because of the challenges associated with their child's autism.  This is why we can't make blanket statements regarding autism since it is a spectrum after all.

Being an Asian American and a female with autism

I never written about my experiences about what's it like being both a woman and a person of color on the autism spectrum.  But I think it's a topic that's important as both females and ethnic minorities are vastly underrepresented in the autism community.  There is also less talk of how these identities intersect and how the experiences and perceptions of autism are different due to intersectionality.  Let me start by saying that I am one of the few Asian American women (or part of an ethnic minority groups for that matter) who is very active in the autism community.  Most of the self-advocates I know are white.  While I am happy that there are autism self advocates who can tell their story, I feel sad at the same time that there aren't so many others with intersecting identites (e.g. being part of an ethnic minority group and a woman) out there telling there stories.  In addition to my personal experiences with being autistic,  I had to deal with marginalization both as being part of an Asian American but also being a female and the negative stereotypes associated with it.  I never really thought that hard about these identities until I started taking college classes that dicuss marginalization due to both gender and race.  This is when I began thinking deeply about how these statuses began affecting my life.   The vast majority of people on the autism spectrum that I personally know are mostly male.  I can honestly say that the boys with autism are different from me in terms of interests and the way autism is express.   I sometimes wished I knew more girls on the autism spectrum and that interventions for people on the autism spectrum had a component of emotional support instead of being ( there will be a future blog post of what I mean by this in the future) based on just learning skills.    I also have to deal with stereotypes associated with traditional gender roles that  conflicts with my autism like being into fashion and trends and the expectation that I have to be social.  Having autism, social interactions are hard because of my social anxiety and I am also an introvert (another post on this will be discussed later).  Since girls and women are expected to be social, it is hard to conform to this stereotype and the negative perceptions that I would viewed as cold and uncaring for not conforming.  

Now I will discuss my view of autism in terms of my race.  I cannot speak about the African American or Latino perspectives since I don't have much knowledge  about those two ethnic minority groups but I will talk about the Asian American perspective on autism spectrum disorder.  What I am aware is that the Asian American community tends to be silent when it comes to special needs which include autism.  They tend to not want to get involved in the autism community because it's a sign of personal shame and all about the honor system.    The reason why I am so open about my diagnosis is because my parents were not the typical Asian family.  My mother was involved in numerous autism groups and was dedicated to making sure I got the best interventions and services that will help me thrive.   However where my Asian American identity intersects with my identity of having autism is that I want to be very open about my condition but at the same time the Asian American community (especially the Japanese American community) is not very open and accommodating about my disability.  This is why I maintain sort of distance from the Asian American community.  These stories of double marginalization in addition to the autism diagnosis are seldomly shared and how the expectations due to one's race and gender can conflict with autism and how it is hard to identify with people of either groups because they don't share the same experiences.  I am happy that I can share both my experiences of being a woman and a person of color on the autism spectrum.