Self acceptance and Self Care

This is kind of related to an earlier blog post on being a perfectionism on the autism spectrum that I wrote last month.   It is about developing a sense of  self acceptance and care for individuals on the spectrum.  I consider this a goal and New Years resolution to develop more self acceptance because I feel that I will feel more happier and liberated.    Believe it or not, I am constantly criticizing myself  over my beliefs and choices even though I know what I want for myself.  This comes in the form of  constant questioning, doubting and cross examining my needs and wants.  Unfortunately this has the consequence of creating unnecessary anxiety and is a form of self-injury.  I feel that my brain is constantly attacking me and I am never satisfied of  myself and where I am now in my life.  For instance, I feel that I should be a more thoughtful person than I am now and call myself a "selfish" and self centered person because I have natural desires of wanting things for myself.    Another habit related to my inability to accept myself is my constant comparison to others and the use of "should" statements.  When I see friends or peers doing something I am not yet doing, I feel that I should be on the same track as they are if I am to be on track to a good life.  

How I developed these self destructive habits has to do with the external situation that I currently live in (being a autistic person living in a neurotypical world) and what I was subjected to  during my formative years.  As stated previously, I was placed in various therapies in which I was constantly compared to peers (both neurotypicals and others with disabilities).  When I was younger, my mother made these statements comparing me to my classmates as well as her friends' children who were a similar age. She would make these statements such as "someone so is doing this, how come you can't do this."  The people in my life made decisions for me that I necessary would not have made for myself if I was put into the driver's seat.   For instance, friends were chosen for me because my parents and therapists wanted me to be more social and to have the experience and more social opportunities available to me..    Although the intentions were good, it had the down side of creating a self destructive script that I do not make good choices in my life and my desire to be a "loner" (meaning I don't crave so many friends in order to be happy) was not socially acceptable.  It also didn't help that my behavioral therapist was the type of person who would sometimes cross examine me during our sessions and it would lead me to self doubt my decisions despite being confident about them internally.    It doesn't help that in the greater autism community, autistics are ranked against each other based on how they conform to neurotypical expectations.  All these factors that I was exposed to growing up has led me to internally believe that no matter the compliments people gave me or the accomplishments I have achieved so far, I still cannot internally accept myself or my core beliefs.

Luckily I am still young enough to combat these self destructive scripts and can lead a more happier life for myself.  My status as an adult allows me to make the choices in terms of how I want to live my life that I wasn't able to make when I was in high school.    How I am going to get pass the negative scripts that I acquired during my adolescence and early college years, is to focus on accepting myself the way I am.  This is accepting my strengths, accomplishments and also my limitations.  It is accepting the fact that there are going to be people in this world(both neurotypicals and other people with disabilities) who are going to be more accomplished  and more independent than I am but that doesn't mean that I am less deserving of the right to live a happy life compared to these people.  Another component of self acceptance is self care.  Autistics like myself were always taught to think more about other people and to put their desires first before their own.  However, as the saying goes is that you can't help others until you take care of your needs first.  Like neurotypical people, this rule applies to people with autism (perhaps more so, because we have a more  limited energy capacity compared to the average person).  The notion of self care can look different for each person since people have different needs and wants.  To look at my life as an example, part of self care for me involved hiring a part time support person  who can drive me around to various places in the community as well as providing companionship to me.   Although I can function without this person, hiring a community support  companion made my life easier since it frees myself from the drama and emotional baggage that a two way friendship often brings.  This is one way autistics can achieve self care.  However other forms of self care that worked for me as well as other adults with autism include finding other autistic people to connect with, finding a passion or special interest, watching cartoons or movies on the weekends  as well as many more activities that would be too long to list here.  Both self acceptance and self care remind all of us to embrace the journey and that there is on such thing as perfection.  Without self acceptance and self care, we wouldn't be able to function in our day to day lives.  I know for myself that it is going to take awhile to get over these self defeating scripts and to develop true self acceptance but I believe that one day I will get there.  Writing this blog post is one step towards my goal of self acceptance and self care.  If self acceptance and self care were more emphasized in autism interventions it would reduce some of the high rates of anxiety and depression that is so prevalent in this population.  I hope my post on self acceptance and self care would be helpful to those both on and off the spectrum who are struggling with this issue right now.    

Perfectionism and Living on the autism spectrum

I want to discuss a very personal topic as it relates to how I view myself and how living with an autism spectrum disorder manifests in my own life.  Although I appear to be self confident when talking in front of people and doing speeches, the truth is that I struggle with being a perfectionist and feel that I am not good enough. This gets manifested in low self confidence, being concerned of how others perceive me , asking for reassurance all the time from family and others who work with me, internally questioning my beliefs and anxiety.   Unfortunately, as I grew older and accomplish more milestones such as graduating high school,  graduating college, and getting a job my perfectionistic ego has only gotten bigger.  I constantly feel that I should be doing more  than I am now and should not make any mistakes or short comings.  This attitude crosses all domains including work, friendships, how I view my autism as well as school performance.  On the plus side, being a perfectionist has made me achieve a lot and has helped me survive through college and pulling mostly A's and B's in my classes as well as helping me developing a good work ethic as an employee.  However, it has the detrimental effect of creating unnecessary anxiety and lowering my self confidence and self esteem and also creating unrealistic expectations on myself.

You might be asking what being a perfectionist has to do with living on the autism spectrum since typical people also  struggle with holding perfectionistic attitudes.  How this ties with autism is that from an early age,  we are put into  behavioral therapies and social skills training classes which  strive to assimilate us into acting normal.  Traditional behavioral therapies such as Applied Behavioral Analysis reward children for displaying desirable behaviors and ignores them for displaying autistic behaviors such as hand flapping, scripting, jumping etc.  This gets reinforced in schools through special education programs and goals written in the Individualized Education Plan which have a strict baseline dates in which such goals should be met.  This is a true depiction of my life as I look back of  when I was going through school and the trajectory of how I developed a perfectionistic attitude.  I went to a lot of therapies as a child and went through various social skills classes as well as starting behavioral therapy when I was in eighth grade.   Sometimes, I felt I was always placed under a microscope in which I felt that all of my behaviors were constantly under surveillance by my parents, therapists and support staff.   My behavior was always measured with data sheets, emails, monthly team meetings, annual IEP meetings etc.  A specific moment in my life in which I really felt that I was under constant surveillance is when I was sent to a two week camp (that I did not want to go) at my behavior therapist's suggestion during the summer of my senior year in which all the activities were closely monitored and all centered on learning cognitive behavioral techniques and to see how well I could perform independent living skills like cooking and cleaning. Let's just say that I was happy to go home when those two weeks were up.  Although the people in my life had good intentions and I wouldn't be in the place where I am now without all the skills that I learned as a result of these intervention and experiences, it contributed to my need in pleasing people and anxiety in needing to be perfect and normal.  My experience and others on the spectrum that I talked to who have anxiety related to the desire to be perfect shows that behavioral interventions and school programs should be less focused on making autistic people act and look at the world in a neurotypical way and be more holistic, relational, and to take into account the needs, thoughts and feelings of the student and client. Another aspect I would like to see in the development of new treatments and interventions for those on the spectrum is the focus more on mental health and developing autism acceptance and positive self esteem for those on the spectrum.

Now as a young adult on the spectrum, I am slowly learning to not be so perfectionistic and to get anxious over the little stuff.  I am learning that I am good enough and that I should not be so focused on what others think of me and to feel more confident in the choices I make instead of doubting and questioning them.  It will be a slow journey since I have held these attitudes for years but I feel that the journey of letting go of my perfectionistic scripts would allow me to develop a greater self acceptance and to enjoy each step of my life journey.   After all, it is about the journey and not the destination that counts.

Ableism and why I named my blog "Redefining Normal"

This post has been on my mind for awhile but have been getting sidetracked with life and adjusting to my new job.  However, I feel this is a topic worth talking about especially in the 21st century in which there are numerous social justice movements that fight for the lives of oppressed and marginalized groups in the United States.  It is about ableism.  Unlike other movements such as racism, sexism,homophobia etc. this concept is less known and discussed when it comes to social justice within American society.  However, it is a concept that pervades all aspects of U.S. society and has either directly or indirectly oppress and marginalized people with disabilities.  Unfortunately, there is no way to talk about this concept in a way that does not sound angry. So try to bear with me if I sometimes sound angry when writing this post.  Since this blog is about autism and to avoid this post from getting too disorganized, I am going to focus solely as to how ableism affects the autistic community as a whole.

I am not the only autistic self advocate that writes about ableism.  Autistic advocates such as Lydia Brown and nonverbal autistic, Amy Sequenzia talks about how ableism affects the autism community and  their experiences of being autistic.  Ableism is a powerful concept because it has the consequence of some autistics not having access to education and employment, having access to supports and accommodations as well as being a barrier of living a happy life.  Growing up, I have been exposed to ableist concepts that in turn negatively affected my self esteem.  This was either overtly or subtly and sometimes within the autism community.  Ableist concepts that I was subject to was the notion of age appropriate interests, pushing for complete independence/ self sufficiency and the notion that there is only one way of social connections with people and friendships which is the notion of peer groups.    I have internalized these messages by reading so many autism books written by neurotypical parents and professionals as well as observing the direct and indirect messages from family, some friends and support people.  For instance, I was encouraged to join clubs which included a lot of group interaction, to dress like the other girls in school and to socialize with more same age peers than adults. Although the people in my life at the time had good intentions,  it had the unfortunate consequence of creating and sustaining an ableist script in my head which in turn lead to my low self confidence in young adulthood in which I am learning to let go.
 Ableism also leads to false assumptions about the intentions and desires of people with disabilities.   For instance, in this media story a football player sits with a boy with autism who often wants to sit alone.  While on the surface it comes across as a heartwarming story to viewers it comes across as ableist by making the assumption that all autistics or people with disabilities should and want to sit with people and socialize during lunch.  Some people prefer to sit alone at lunch since it is their only time they can relax and take a break from being around other people.  I, myself am a  introverted person.  During breaks such as lunch, I prefer to have alone time since it  allows me to decompress especially if I am around people for most of the day.  Media stories such as the football player sitting with the autistic boy at lunch is an example of  "feel good" stories in which a neurotypical person is portrayed as "helping" a disabled person achieve "normal" or typical experiences is known as inspiration porn.    Inspiration porn-like stories have no direct benefit for people who have autism or other disabilities but instead portrays us as needy and that we should be treated with pity.

Challenging ableist views of society and that there is only "one" correct way to live and experience life is the reason why I named my blog "Redefining Normal."  I wanted to use this blog as an opportunity to educate others on how I see the world and to educate others that there is more than one way to live a successful and happy life.  .  However, the writings of self advocates like myself are under utilized as the works of well-known neurotypical experts and parent's accounts of autism are more valued by the greater society which promotes more ableist views on autism.  The good news is that we are at a time in which more autistics are speaking out and sharing their stories and that more people are willing to listen.  I think it is time that we have a dialogue about how ableism is pervasive in our society and how it is a social justice issue just like race, gender and sexual orientation.  If people are more aware and mindful of ableist attitudes, we have the opportunity to combat it and make society a more accepting and loving place for those who live with disabilities.

 

My embarkation into the employment world

 I recently been offered a job as a 1:1 aide for a special autism school.  I've never thought it would happen so soon as I just began actively looking for a job.    To assist me in the daunting process of finding a job, I utilized a supported employment agency that has an employment specialist actively search for jobs on my behalf as well as providing me with a job coach once I get hired.  To began the story, the school asked me to come in for a interview.  Originally the job advertised on the job search engine Indeed was for a special education teacher, but since I don't have a teaching credential, the employment specialist sent an email asking if there were any other job openings that fit my qualifications.  It turned out that there was an opening for a 1:1 aide position in a autism classroom.    I interviewed for the job and they basically asked questions about my volunteer experience as advertised on my resume as well as giving me scenarios of how I would resolve situations since the job entails thinking on your feet which involves problem solving, emotional regulation and having good judgment.  When the guy interviewing me asked these questions, I began to feel nervous since I felt I was totally unprepared for this part.  However, I guess I managed to do very well because an hour after the interview was over, the director of the school called me and offered me a job and asked me to get my fingerprints and a TB test so they can hire me.  When I received the phone call, I felt incredibly overwhelmed with excitement and nervousness.  I was excited because I was thrilled that someone wanted to hire me despite having a disability.  Until then, I was starting to feel down about my employability because of my disability especially in this competitive job market.

On the other hand, I  feel nervous because like any other transition, I am venturing into unknown territory in being a 1:1 aide especially since there is a huge emotional investment in this line of work.  I have been trying to process my own emotions in taking on a caregiving role as an aide.  I have been on the other side as I had aide help throughout school as well as currently employing a support person for social recreational purposes.   However, the thing that has been eating me is that since I am capable of supporting another student, I feel that people would put me on a pedestal and feel that I can't have support in my own life.   I know this is my perfectionistic self speaking, but since I am already an exemplary in the autism community for all I have accomplished, I am holding myself up to high expectations.  There is a lot of emotions surrounding me taking on this position as I have to process taking on such a huge role and the duality in simultaneously being a support person as well as being the receiver of support.

It is going to be an adjustment period as I embark on this journey and there will be days that will be tough on me emotionally.  Overall, I look at this job as a stepping stone in what I ultimately want to do in life.  This is a way of cessing if this is the right field for me.  I am glad that someone is willing to give me a chance at employment especially since the hiring rate for people with disabilities is so low in this job climate.

My review of the movie Life Animated

Last week, I finally got to see the film Life Animated  which is about a young man with autism who found a way to connect with the world through Disney movies.  I've always wanted to see this film after hearing from a friend who told me how good the movie was.    To give you a brief synopsis the film centers around Owen Suskind who was diagnosed with autism at age three.  His parents noticed that around age three he started to lose speech and was withdrawing in his own world.  Once his parents received Owen's diagnosis, they tried all they can to connect with him and to get him  to speak.  Unfortunately progress was slow at first until they realized one day when they were watching a Disney movie with him that he was using these films to connect with the world.  They realized this gradually through scripts and insights he provides such as explaining that his brother doesn't want to grow up like Mowgli and Peter Pan.  The film chronicles Owens life as he comes of age and transitions out of school age services into adulthood and independent living as well as how he utilizes the power of Disney to navigate and deal with this transition.  The  film interweaves animation into the film that chronicles pivotal moments of the film.

I personally loved Life Animated and found it relatable as someone on the autism spectrum.  I loved how the synopsis of the film mainly centers around Owen and how he views the world. Too often most movies and television shows are filmed from the perspective of parents and professionals giving an "outside looking in" perspective on autism.  Often these type of third person films portray autism in a negative light and how often the child is a burden on the family.  Although Owen's parents and brother were interviewed and talked about how they "lost Owen" in the beginning, the film mainly puts Owen's perspective and insights in how he sees the world over those of his parents and brother as well as others who work with him.   

The second thing I liked about the film is the positive message of embracing Owen's interest in Disney and how he uses it in a empowering way instead of  faulting him for not having interests that are  considered age appropriate according to the norms of typical society.  For Owen,  his interest in Disney allowed him to not only connect with his parents but allowed him to start a Disney club at school in which he has the opportunity to demonstrate leadership skills and ultimately leads him to have a girlfriend.   As someone who is a big fan of Disney and other animated cartoon characters,  I can relate to Owen in some degree even though his interest in Disney films is more all- encompassing and intense.     An example in which the film resonates with my experience is when Owen was getting ready to move into his own place. He was  starting to feel anxious and asked his dad if he can watch scenes from Dumbo to help calm himself  down.  Like Owen, I have  utilize my love of childlike cartoon characters like Hello Kitty and Frozen  to help me deal with my transition to a four year college as well as my current transition into the world of employment and the demands of the adult world.   This is the part I wish more autism experts understood in how unusual and childlike interests like Disney serve a purpose of comfort and predictability in people like me and Owen.  Too often, most autism interventions aim at eliminating these interests rather than embracing them.  Life Animated  does a good job showing how the power of special interests can be channeled in a way that allows individuals with autism to connect to the world and how it can be utilized in therapeutic interventions.  

Another way I can relate to Owen in Life Animated is his anxiety about  growing up.   I liked how the film portrays Owen when he comes of age and demonstrates from a first person perspective of what it's like to transition to adulthood.   My transitions from high school to community college, from community college to a four year University and now onto employment brings a lot of  fear and uncertainty about the future.  To see Owen going through a similar thing makes me feel like I am not the only one in my feelings.  There are not a lot of realistic first person portrayals about transitioning from the comfort and structured nature of school services to the unstructured nature of adulthood.   As someone living with autism,  I felt that Life Animated  accurately portrayed this rite of passage and gave me the validation that I longed for.  

Overall on a scale on 1 to 10, I would rate this documentary a high 10.  It is a neurodiverse friendly film which has the rare occurence of telling a story utilizing an "inside looking out" perspective that embraces the autistic way of thinking.  Whether if you have experience dealing with autism or not,  I would recommend everyone to see this film as some of the film's central message would resonate with everyone about growing up.

Here is the link to the trailer of Life Animated

https://www.youtube.com/watch?v=4n7fosK9UyY

     

Why making friends is hard when you have autism

For most neurotypical people, the nature of friendships is a rewarding experience.  Friends are usually the main people that fulfill the social need of humans.  Most people take the skill of making and keeping friends for granted.  However, imagine living a life in which making and keeping friends doesn’t come easy.  This is what my life is like every day. Since I was really little I always had a hard time making and keeping friends.  Although I went to various social skills groups and classes as well as being taught social skills in behavioral therapy to address these concerns, this will be a continuous challenge for me.    The social complexities and cues of friendship are hard to decode.  For example,  I sometimes don’t know if someone genuinely wants to hang with me or not is the hardest part of meeting new people and establishing potential friendships.  Another hurdle of why establishing friendships are hard is the fact that I have no control over the behaviors of other people.  I can only control my behaviors and what I put into the friendship, but I have no control over the actions and thoughts of others.    In the past, friends would flake out on me or change plans at the last minute which would cause me stress.   As an autistic person, any sudden changes puts me on edge and when my friends cancel out on me it throws me off.  A third challenge that making and keeping friends has for me is the concept of group outings or get-togethers.  Most young adults in their 20’s enjoy group outings such as parties and going to the bar etc.  For me, I don’t enjoy such things because of the sensory overload that accompanies me whenever I am in a room full of people.    The last challenge of making friends when you are on the spectrum is difficulty finding quality friends that meet my emotional and companionate needs as well as being sensitive to my needs as an autistic person.   I am not looking for a play companion who only does fun stuff and sticks by me for only the good times, but want friends who I can talk about my problems and challenges and is also reliable and sympathetic to my challenges.  For this reason I prefer to hang out with older and more mature people since they are more likely to meet the above criteria.   Unfortunately more often than not, it is very hard to find my ideal friend especially when living in a big and spread out metropolis like Los Angeles.   All these factors combined and the amount of effort it takes for me to maintain friendships makes this fundamental social interaction increasingly tough for me.  This is why I don’t have too many friends in my life because of the amount of maintenance and energy it takes out of me.

It can be a frustrating thing for both the autistic person and their parents and other support people for the lack of friends because of missed social opportunities.   Over the years I have developed two beliefs that have helped me feel better about my difficulties.  I will now give you these two pieces of advice.  The first piece of advice I would offer is to not stress so much about not having a lot of friends.  Instead, you should focus on having quality friends who will meet your needs and respect you for who you are.  I am grateful to find at least two good friends who accept me for who I am and are okay with my autism and its unique characteristics and limitations.  One of them is also on the spectrum herself and shares the same desire to spread autism acceptance as well as advocate for better services and accommodations for people on the spectrum in the greater society.  It is long term friendships in which one can share vulnerabilities and intimate thoughts that will matter in the long run .  Another piece of advice that I learned to adopt is focusing on having a support network or finding other people in your life besides your friends to provide emotional support if you are having trouble finding the right type of friends or your friends are not emotionally available.  For instance, I am very fortunate to have a loving family, a behavior therapist and a mentor to provide emotional support when I am going through a hard time.   The point of this blog post is to share my experience of making friendships as someone living on the spectrum and hopefully this might help others on the spectrum that are in the same boat.

Addressing the employment problem with autism

According to a U.S. News article, many young adults with autism are more likely to be unemployed compared to adults with other disabilities.  This is a very glooming statistic considering that many young adults on the spectrum are considered to be very good workers and have a lot to offer as employees.  The unemployment issue with adults with autism is compounded by the lack of adequate job supports (e.g. a job coach) that can help individuals with autism spectrum disorders navigate the world of employment and the interpersonal interactions that are often required of most occupations.  This issue hits home for me as I am a newly college graduate who is embarking on the world of employment.  To make things more complicated is that most supported employment or vocational training programs are only equipped to dealing with those individuals who are more impacted by their disabilities and are only capable of securing menial jobs (e.g. working at Target or Ralphs as a box boy) .  For me,  finding a meaningful job which has a supportive and nurturing work environment is my top priority.  With that said, I will now offer some tips and solutions of how we can create more meaningful employment opportunities as well as how to create more supportive work environments so our adults on the spectrum can succeed in the work force.

1. Accommodations

The first thing I would suggest is that prospective employers need to create more accommodations for those on the spectrum that will allow them to complete work tasks successfully.    Too often, I feel that a lot of  time is spent on teaching the spectrum population to conform and integrate but it is a two way street.  Employers need to be understanding and aware of the challenges autism brings  and should take the effort in working with them and be sensitive to the limitations of those on the spectrum.  Some suggestions of useful accommodations that employers should use is visual aids and schedules such as creating task lists and also breaking down a task into step-by-step instructions that are manageable and easy to understand.  With an accommodating work environment, adults with neurodiverse conditions like myself can feel confident and become productive employees.

2.  Creating a Supportive and nurturing work culture

For me, the ideal work environment is one of collaboration in which each employee has a set of skills and experience that they can bring to the table.  Instead of having a one-way hierarchal system in which the boss has all the power and gives commands to the employees and suboardinates, I want an environment in which I can have an honest and open discussion with my supervisor and co-workers in which we can give each other feedback of how we can improve the productivity and operation of the entire business or company.  Like I said before, people on the spectrum have a lot of skills and experiences to employers and having a warm and nurturing work environment enables them to use their talents and skills.

3.  Having a nurturing supervisor
I talked a little bit about this in my previous point but a supportive boss or supervisor can make all the difference between really loving your job or hating it.  After all the boss is the one that writes your paycheck and the supervisor is the one you will be dealing with on a daily basis.  Overall, people on the spectrum generally do well with bosses and supervisors who have a generally calm demeanor and can help mentor them in gaining valuable work skills and experiences.  They allow room for mistakes or errors and treat them as learning experiences.  I personally like a supervisor who will take the time to get to know me as a person and learn about my strengths and weaknesses.

With these three main points, people on the spectrum can be productive workers who can make a living and feel good for what they do.  As Steve Silberman said at an event I attended at UCLA, "workplaces need to change to address the needs of those on the autism spectrum."