My birthday trip to The Happiest Place on Earth

In celebration of my 24th birthday,  I wanted to go to Disneyland since one of my special interests is Disney characters ( in particular Frozen and Disney Princesses). I felt it was time to pay  the happiest place on earth a visit since it has been nearly a year and a half since I last went plus I wanted to take home some Frozen and Disney Princess themed souvenirs home that are made by Disney and not licensed :-).   I decided to plan on going to Disneyland last Friday because going on the weekends would result in super long lines since everyone would be out of school or work.   Since my best friend was in Korea, I asked my mentor if she would accompany me on my early birthday trip.  Luckily she agreed to come with me.  As always, I felt very anxious in anticipation of going to Disneyland, since the theme park is notorious for its crowds and that since we were limited on time, I was worried that I wouldn't be able to do everything on my list that I wanted to do.  In particular, I wanted to take my pictures with the Disney Princesses and also Elsa and Anna which is something different than what I usually do when I go to the happiest place on earth.  On past trips, I would usually go only on the rides.

Luckily, we decided to go when the park first opened at my mentor's suggestion in order to maximize our time.  It turns out that this was good planning because the lines weren't too long since the maximum amount of wait time was about 30 minutes.  We were able to hit all the rides that were on our list plus have some time to attend some meet and greets with the Disney Princesses and Star wars characters.   Not only was I am able to take pictures with some of the princesses (Cinderella and Snow White) but I was able to go to California Adventure and take a picture with Elsa and Anna which made the highlight of my day.  

Even though I don't go to Disneyland a lot, it is always a pleasure to go and am amazed at the amount of adults who express their Disney fandom outwardly.  I suddenly feel like that I am in a safe space to outwardly display my love of Frozen and Disney Princesses (by carrying and wearing merchandise) without having to worry about people judging me or looking at me funny like how I feel when I go out to other places.  Seeing the vast majority of people both young and old wearing Disney ears, carrying backpacks engrave with Disney characters on it truly shows how powerful the influence of Walt Disney's vision is across age groups. All of the sudden having autism or being an adult and all its norms, roles and responsibilities is not a relevant factor when I go to Disneyland.  That is the true meaning of the happiest place on earth is that no matter your age or circumstance, Walt Disney has a place for you in his magical kingdom.

Balance: When to comform or go out of your comfort zone versus embracing your unique autistic self

I wanted to write a post about this for awhile but I was thinking about it the last couple of days.  It is the notion of trying to find a healthy balance of going out of your autistic comfort zone and stretching yourself and also embracing your own unique quirks as an autistic person.  I am sure everyone both neurotypicals and people with autism and other disabilities faces this same dilemma of trying to balance one's life.  I am constantly looking for that "balance" between learning new skills and expanding my horizons and embracing my own unique autistic identity.  This has been very challenging.  On the one hand, it is good to go out of your comfort zone and learn new skills because it makes your life a lot richer.  If I wasn't encouraged to go out of my comfort zone, I wouldn't have achieved what I had so far such as going to college, living in a dorm, making a new friend etc.  Left to my own devices, I would have isolated myself and would have stayed home all day.  Let's face it, in order to grow as human beings we need to work on skills to develop our full potential or else we wouldn't get stuff done.  Unfortunately, this involves  having to do things we don't necessarily want to do or is out of our comfort zone. As it pertains to autism, sometimes we need to encourage our spectrum population to get out of their shells and experience the world and make them socialize with others.  At the same time,  it is overwhelming to go out our comfort zones and learn new skills all the time.  If my time was spent on activities that involve skill building and going out of my comfort zone 24/7, life would be pretty miserable for me.  There were times in my life where I felt the majority of  my time was spent out of my comfort zone to the point it became a miserable thing for me.  This was the case when I lived in a dorm in college. While living in a dorm, I felt I had to work and go out of my comfort zone for everything from social activities to making sure my room was clean and making sure my homework is done.  This issue is a separate blog post in of itself, but the point is because I had a lot of added responsibilities that demanded me to go out of my comfort zone became overwhelming for me.  Now, people would compliment me and say I was brave for doing this and it made me grow as a person.  But at the same time, they didn't know all the uncomfortable feelings of anxiety and depression that I had to endure.  Too often, a lot of time is spent packing as many activities that demands going out of the comfort zone and work on our spectrum population to the point that it overwhelms them.  Parents and professionals gets so worried of missed opportunities or that their child is going to be a hermit all day that they want to occupy their day as much as possible.  It is important for individuals on the spectrum to be given down time or activities that don't demand much from them.  For instance, if an individual needs time to stim or flap his hands, he should be given that opportunity because those behaviors are important part of maintaining regulation.     Just like typical people, people on the spectrum need time during the week that is not spent on going out of the comfort zone or doing undesirable activities.  

Going back to the main topic of this post, how do you find that healthy balance.  My advice is that only go out of your comfort zone if it's going to get you one step toward the goals you set for yourself.  Don't do activities that are out of your comfort zone if it's not related to what you ultimately want to do in life.  For instance,  I am not a particularly fond of group outings as a person who is introverted. However, if there is a group event that is related to my goal of ultimately becoming a self advocate, I would go out of my comfort zone and attend that event because I know that I would meet people that would ultimately help me further my goals as a self advocate.  I know it can be challenging to find that healthy balance between going out of your comfort zone and embracing your current self, but once you do find that balance your life would become a whole lot richer.

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.

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.
       
 

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.

A very interesting article

I was looking through facebook today and found that one of my friends shared an article.  Link attached here:
http://www.dailybreeze.com/general-news/20160121/el-camino-college-professor-fears-for-life-after-students-threat-to-kill-her?source=most_viewed.

When reading this article, I had a lot of mixed feelings about it.  On one hand, I sympathize with   this individual and his frustrations of being stuck at El Camino College (a community college).  Going through college, I too have been frustrated with the lack of services and supports and the demands of college academic work.  On the other hand, I don't want people to come to the conclusion that autism is linked to violent behavior.  What was particularly disturbing about this piece was that he attributed his autism to him making violent statements. I am concerned  that when people read this article, they might think just that.  In the past, people have made faulty conclusions when reading articles involving a shooter that the autism caused these guys to shoot.    I just want to let people know that most people on the autism spectrum are not violent.  This guy clearly has some other mental illness along with autism.  For me, I am afraid of guns, violence, shooting and blood etc.  I am afraid of weapons especially knives and don't have the coordination to use a gun or knife.  Most of the people on the autism spectrum I personally know are not violent individuals.  Thus, it is important to look at each individual on the autism spectrum as a unique individual and that this is an isolated incident.  Another thing that needs to be taken away from this article is that there needs to be more support services for adults on the autism spectrum especially for those who are in college or on the milder end of the spectrum.  I cannot tell you enough how many times I have felt frustrated, depressed, lonely and anxious throughout my five and a half years in adulthood because of lack of support services that meet my needs.  How I got through is that I got creative (will talk more about these methods in future posts).   If this guy got the help he needed that would help him realize his potential, this incident might not have happened in the first place.