What Inside Out has Taught me about emotions and mixed feelings

I know this post is a year late as the hit Pixar film Inside Out was released last year.   Back then, my blog was not in existence and was not dedicated to writing at the time.  But recently this topic has been seeping through my head especially after seeing the newly released film Finding Dory and dealing with my own emotions that I decided I want to write about my insights from the film and how it relates to my life with autism (better late than never).

To give you a brief synopsis, the film centers on a girl named Riley and her emotions Joy, Sadness, Fear, Disgust and Anger.  Everything seems fine in Riley's life until she and her family move from Minnesota to San Francisco.  This is when everything in her world starts to turn upside down.  She has a hard time adjusting to her new life in San Francisco as she seems moody and depressed thanks to Sadness messing around with Riley's core memories. Sadness starts to feel bad for messing everything up but eventually she starts to realize that she plays a valuable role in Riley's life. What makes the movie relatable is the  central message of having mixed emotions and that it's okay to feel sad sometimes.  Oftentimes, society expects us to hold a positive attitude all the time even when we don't feel like smiling.   However, it is unrealistic to be happy and hold a positive attitude all the time.  Let's face it, life is not all good and can really suck at times ( hence the term "life is a bitch").  I would be so hard on myself for not feeling happy and positive all the time and felt there was something wrong with me anytime my head went into the negative.   However, I learned that both happiness and sadness are very important emotions.  In fact being overly happy is not good either. For instance, I personally found Joy being insensitive at times during the film especially in the scene in which Bing-Bong (Riley's imaginary friend) was distressed about Riley not remembering him in which she proceeds to tell both Sadness and him to put on a happy face.  Sadness, on the other hand  seems more in tune with Bing Bong's emotions and distress and tries to connect with him.  If we were constantly happy and peppy all the time, we would take things for granted.  Sadness and other negative emotions helps us appreciate the good times and treasure them.  It can also help us connect with others on a deeper level.  In Inside Out, it was Sadness that helped Riley appreciate and treasure her moments in Minnesota and helped her express her feelings to her parents. What Inside Out has taught me and society is that it is okay to feel vulnerable and to allow permission to feel sad.  Both sadness and happiness are both important feelings that make up the human experience.  

  

It takes a village to help individuals on the spectrum reach their potential

"It takes a village!" is a phrase I hear so much in the autism and special needs community.  I could not agree more with this phrase or African proverb since getting to this point in my life would not have been possible if it were not for the numerous people such as therapists, aides and family who helped me along the way.  No one can deal with a disability alone (especially autism) since you often face barriers, challenges and also feelings of isolation when living with special needs.  My support network has helped me develop the confidence and acceptance to become a self advocate.  The one person who was vital in helping me with my find my voice was my behavioral therapist who I have been seeing for 10 years.  Although at the beginning of our relationship, I was resistant to working with her  over time I realize that she helped me grow as a person and the coping strategies she has taught me such as journaling helped me develop an idea of wanting to write a book about my life.  Hence, "Working the Doubleshift: A Young Woman's Journey with Autism" was born.

Another group that is part of my "village" is the numerous aides and mentors who helped me throughout the years.  They spent a lot of time with me and helped me deal with my feelings of isolation especially during my middle and high school years.  I felt I could turn to them for advice and emotional support when my therapists were unavailable and I do not feel like turning to my parents for advice and support.

My village is constantly changing and expanding.  I will meet new people who I can add to my "support village."  Today I am happy with my current support network of family, support people and friends who will continue to support me on my journey as I continue to grow and explore what I want to do.

Autism and anxiety

Studies have shown that a vast majority of individuals on the autism spectrum suffer from anxiety disorders.  This probably has to do with many different things like awareness of differences, increased sensory sensitivities etc.   Anxiety can manifest itself differently depending on the individual and can also vary in severity.  With this blog post, I am going to talk about my own experience with anxiety and how it manifests in my life.  My journey with anxiety started during my teenage years as I started to develop awareness about my autism and that I was different from my peers.  I would constantly worry how people would perceive me and if people would like me.    When I was younger I expressed my anxious feelings through meltdowns and had perseverative behaviors (I repeated myself a lot).  As a result of not having proper control over my anxious thoughts, I had to be on medication in order for me to cope with my anxiety a lot better.  However through behavioral therapy I was able to learn coping mechanisms and techniques such as journaling, deep breathing etc. to manage my anxiety so by junior year I was able to wean off my medication completely.  This might sound like a victory story that I was able to come off my medication completely since not everyone with anxiety and autism are not able to fade their medication.  However despite all the progress I have made over the years, I still struggle with anxiety. There are still days where I can't reign my spinning thoughts and the anxiety gets the best of me. While I am not the type to experience physical symptoms related to anxiety, there were times I experienced vomiting as a result of a nervous stomach.  My anxiety tends to heighten when I am faced with a lot on my plate or face with a challenge or transition (like finding a job) in which the outcome is unknown.

How my anxiety is related to autism is that I experience social anxiety.  Unlike most people with typical social anxiety, public speaking does not bother me as I have spoken in front of audiences before.    I struggle in group social situations, because the increased pressure and demands causes me to feel anxious.  I deal with this by withdrawing which is why I might seem antisocial or come off as "aloof" and "cold" to some people.  In my case, when I am feeling anxious my autistic self comes out more because I am so focused on taming my thoughts that sometimes I may not be aware of my surroundings and behavior.   This is why I prefer to hang out with my friends in a one-on-one situation because it is less complex and I get to know people better.
Another issue in which my anxiety and autism intersect is transitions or the notion of change.  While I got better at not having a meltdown when there is change happening in my life, I still get very anxious when I am in a transition period (e.g. from high school to college) because of the unknown.  For instance, I didn't feel like it was a good idea to go to a 4-year college and live in a dorm right out of high school since the combined demands of adjusting to college and independent living would be too much for me to deal with at 18 since I was emotionally immature for my age.  I went to a community college for a few years to mature and then transfer to a 4-year college.  This is the part I feel most experts neglect when talking about the transition from high school to college.  It seems that anxiety is brushed aside in favor of skill building.  To deal with anxiety, it is best to take "baby steps" in building skills because trying to cram everything all at once can overwhelm the individual to the point that they won't be opening to learning and can lessen the chance for a successful outcome after a new experience.  Having autism and anxiety is not easy, but I have learn to accept my anxious thoughts which makes living with the two conditions more manageble.  The more I try to fight my anxiety the harder life becomes harder to deal with.   I hope I have provided an accurate depiction of what autism and anxiety looks like for people on the spectrum.

The Problem with Functioning Labels

"I've never knew you were autistic if you haven't told me" or "you seem very high functioning" is a response I get all the time when I share that I have autism.  This is the effect of the functioning labels that are placed upon people with autism. Originally, functioning labels have been used in the medical  community to differentiate someone on the spectrum based on IQ, speech and level of independence,  The problem with functioning labels is that it paints a simplistic picture of someone's experience with autism and doesn't take into account of people on the spectrum who have "splintered skills" meaning depending on what areas or domains of a person's life you are looking at someone maybe considered "high functioning" but that same person will be considered "low functioning" in other domains in his/her life. To illustrate my previous point,  I am going to use a example that I have seen in other blogs such as Musing of an Aspie's post on functioning labels:  Sally is a articulate and accomplished young woman who graduated college with honors from a reputable private Christian college. She has self published a novel about her life with autism and has spoken in front of various audiences including parents at her old school district, college students as well as at conferences and senior centers.  Sally serves as a board member for a local autism organization as a self advocate.  She is also paid part time as a research assistant for a professor.   Jill is another young woman in her 20's.  She is very anxious, struggles with sensory and motor planning issues and self confidence.  Jill needs help with independent living skills, doesn't drive  and can't cook meals for herself.  To deal with her constant social anxiety and self confidence, Jill needs a one-to-one social mentor who takes her out on outings to practice social skills and get her out of the house to provide structure in her life.  Her hobbies and interests include Hello Kitty, Disney Princess and other cartoon characters that are equivalent to a little child.  When looking at these two young woman, one would consider Sally to be "high functioning" and Jill to be "low functioning."   What if I told you that Sally and Jill are the same person.  They are both depictions of my strengths and weaknesses.  This is why you can't judge and label someone as "high functioning" and "low functioning" based on what you see on the outside.  Depending on the day, context or situation or mood, sometimes you will see Sally but other times you will see Jill.

Another issue that I have with functioning labels is that those who are considered "high functioning" or less impacted with autism are considered "too capable for supports and accommodations." An example of this mindset is when people who are diagnosed with Aspergers get rejected from regional center services or the school district refuses to give a 1:1 aide to a student because she is too "high functioning" and is taking regular education classes.  This is why it is harder to find supports for those on the milder end of the spectrum especially when one ages out of the school system and into adulthood.  This is the issue that I currently face as an adult especially when it comes to employment.  There seems to be more supports and resources allocated to those who are considered more impacted because of the low functioning/high functioning dichotomy.  This is the unfair distribution of resources and supports that is rarely ever talked about publicly within autism conferences or the media yet many self advocates write about it.  I think it is time to move pass the medical classification of functioning labels and to look at people with autism as individuals and to allocate supports based on their wants and needs.

The arduous transition to adulthood

This post has been on my mind for awhile, but other topics seem to take the lead when blogging.  I want to share my experience of transitioning from high school to adulthood/college.  As we all know, services for adults are very slim compared to the amount of services and supports available to children as well as adolescents still in the school system.   In the K-12 system, numerous services and accommodations such as one-to-one aides as well as having behavioral therapies are provided through the use of a IEP (individualized Education Plan).  As a result of these services, children with autism have a huge support network dedicated to their success not only academically but socially and emotionally as well.  I was very fortunate that I had a support network of school psychologists, aides as well as a in-house autism behaviorist for high school.  Having a team of people who cared about my well-being helped me to persevere through all of the issues and anxieties that plagued me through middle and high school.  However, this all changed once I got my high school diploma six years ago.  Overnight, I went from having a lot of support to no or very little support.  The only people who were still on my support team was my privately paid behavioral therapist and my parents.  While they provided help, it was not enough to address the large amount of transition anxiety that I was facing.  As a result, I had to navigate my transition to community college on my own with very little help.  Of course there is the disability center at college but they only provided academic accommodations that was geared toward those with learning disabilities as well as physical disabilities.   During my first year in college, my mom and I checked out various day programs recommended by the regional center but most catered to those who have intellectual disabilities and were low in quality.  As a result of losing my high school support networks and the limited number of  available supports that appropriately address my needs as a college student, I went through phases of anxiety, frustration as well as depression.  The periodic depression that I went through was characteristic of most of  my college years. These phases would happen when I felt there was a lot of expectations placed upon me, when I transferrred to a four year university and lived away from home for the first time, when my aide/social mentor left last year and my therapist was not as available to see me during a hard and challenging spring semester.  Despite these obstacles I faced I was able to graduate with a college degree this past December.

My story and experience shows that transitioning to adulthood whether if you got your high school diploma and college bound or someone who aged out of the school system (you can stay in the school system until age 22) is no easy journey.  It is also important to remember that just because you had preparation in high school to deal with this transition, does not alleviate the anxiety and does not mean that you will need less support than you received in high school.  I had a lot of preparation and skills training such as fading my aide by the end of my sophomore year, having a transition IEP, learning problem solving, self advocacy skills and emotional regulation as well as having a part time job internship at a department store my senior year.   Regardless, I still needed support and if anything I needed more support once I transitioned to college.  It makes me frustrated that  experts stress that if intervention happens in childhood and adolescence that supports normalization, they will easily navigate the transition to adulthood  but neglect to mention the anxiety that comes along with life transition for those on the spectrum.  This is why it is important for more autistic adults to share their experiences and challenges of transition to college, adulthood or work and employment.  It is also important that there needs to be a wide range of supports (in terms of employment, social and recreational and housing) that meet the individual needs and wants of autistic adults.  It is also important that future interventions for adults with autism should focus on making their lives easier instead of normalizing them or dehumanize them.

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.