Sunday, February 21, 2016

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.

Monday, February 8, 2016

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.

Monday, February 1, 2016

The problem with the term "Age Appropriate" regarding autism

This is a topic that tends to be a soap box of mine meaning that this a topic  I am very passionate about.  In the past there has been concerns by parents and professionals of getting their students or child into developing more interests that are "age appropriate" in order for them to fit in with their peers.  This gets emphasized during adolescence as teens abandon interests from their childhood and develop more mature interests.  Parents tend to get concerned at this point because they see that their own son or daughter are still clinging onto interests from childhood and worry that they will miss important social opportunities because of their child's immature interests.   I've read numerous articles and books about this topic and how it is recommended on gradually "fading"  childhood interests and replacing it with more age appropriate activities.   Others recommend having a neurotypical "peer buddy"  mentor the autistic teen into developing more typical interests that are more appropriate for middle or high schoolers.   These tactics that are used to address the issue of age appropriate interest are part of a broader viewpoint that since people with autism struggle so much with social situations it is the reasons why their child cannot develop the same interests as their peers.  In other words, this viewpoint stresses that people with autism are incompetent and don't know any better and the "disability" is the reason why the teen or young adult still clings to childhood comforts like Hello Kitty or Sesame Street.

The problem with the term age appropriate is that it is an arbitrary term that is rigidly use in order to keep people in their place in society to support someone else's view of normality.  However the application of this term has the effect of oppressing other forms of individual expression and self identity.  This is exactly how I felt during my own adolescence.  When I was in middle school, I had a huge preoccupation with Hello Kitty, Disney Princesses and Barbie.  I  use to wear a Barbie hat to school and out in the community (the only time I would wear a hat) along with Disney Princess T-shirts.  I was happy with my interests and choices and didn't give a damn of what my people thought or what my peers were into.  I knew exactly what my peers were into (at my school they were into Abercrombie and Fitch and Juicy) but I just didn't care.  However my mother was one of those parents who became concern that I was still into wearing Princess shirts and my juvenile interests as I was going into high school while the other girls were moving on to more mature interests like fashion and makeup.  She was concerned that I didn't have a fashion sense and I would be limited socially because of it.  This was one of the reasons why my behaviorist (who is lovely by the way) was brought in to work with me.   I know my mom had good intentions since she wanted the best for me and wanted to make sure that I was able to be functional socially.  However, I did not perceive it that way and I felt that having "juvenile" interests like Hello Kitty and Disney was wrong.  Perhaps what really lowered my self esteem was when my mom and I were futured in an article on Newsweek  magazine in 2006 which was the fall of my freshman year of high school.  In that article,  my mom discussed how I was a high school student and how that developing more teen interests was a difficult task for me because of my autism.  That article also painted me in a light of "incompetence" and that autism was the cause for me of liking Disney Princess and Hello Kitty rather than considering it as a part of my individuality.   This article really affected my self esteem and being comfortable of my own identity.  As a result I developed a negative and self destructive script in my head that I still carry with me (that  I am slowly learning to let go) into my young adulthood that it is wrong to like cartoon characters or activities  designed for children because it is not considered "age appropriate" and that people will judge me for it.

The good news is that society is slowly changing.  Years later in college, I rediscovered my interests of Hello Kitty and Disney Princess which gave way into me liking My Little Pony, Frozen and Monster high.  The difference between today and back in my middle school days is that there are more adults and teens  both disabled and nondisabled alike who are open about liking Hello Kitty, Frozen etc.  This is evident in the pages I follow on instagram which is the beauty of social media.  I even get compliments when I carry my Hello Kitty purse instead of eyerolls and judgmental comments.    There is also evidence of this paradigm shift as I see more character shirts for adults in stores.  Occasionally the negative script I developed in my head criticizing my choices in liking cartoon characters resurfaces but I am learning to "let it go" thanks to coaching.   The take away from this personal story and this blog post is that when we focus so much on developing age appropriate we sometimes oppress the person's right to express their self identity and individuality and that we forget that there are adults and teens out there without autism who like cartoon characters which shows that childlike interests are not exclusive to autism.  A person's interests and hobbies does not determine their maturity level since there are a lot of successful and accomplished people (including your blogwriter who has a college degree in psychology) who are big kids of heart.  I think that it's time we move past the term "age appropriate" in the autism community and to embrace each person with autism and their interests and hobbies regardless if its developmentally on target or not.