Fathering Autism and why we need to address the existing divide between Self Advocates and Parents.

    What prompted me to write  this post was this video made by an autistic self advocate falsely accusing autism family Youtubers Asa and Priscilla Maass (who run the popular autism channel Fatheringautism) of abusing their nonverbal autistic daughter Abbie.    What resulted from this accusatory  video was the Maass family getting a visit from Child Protective Services as documented in their daily vlog yesterday.    From watching their vlog,  you can tell that Asa was furious that someone would make such an accusation when it is apparent from watching their videos that they are genuinely caring parents who want the best for their daughter.    This incident is an example of why we need to keep talking about the existing divide that continues between autistic self advocates and parents of autistic children.  It is with this, I'm going to discuss how the good intentions of this channel can sometimes be misinterpreted by self advocates.

The first reason why the Fathering Autism channel gets so much hate is their belief in ABA therapy in helping Abbie learn new skills.    A lot of autistic self advocates are against ABA therapy claiming it is abusive and is based on compliance training.  However from watching this channel, it is apparent that Abbie's ABA therapist doesn't utilize the methods that traditional Lovass style therapists used back in the day.  Her therapist, Brandy,  comes into Abbie's house and work with her learning life skills (e.g. putting groceries away, setting the table) and she gets to choose what tasks she wants to work on.  Sometimes Brandy and Abbie do community outings such as going to the Post office or stores like Target to get her use to going out in public.    In fact, Asa addresses the concerns of ABA therapy  in this video that was made back in January.

    When I was a teenager, I received therapy similar to the style that Abbie has.  My therapist came to the house and she worked with me on self advocacy skills and emotional regulation.  We would do community outings like going to the mall, the grocery store or go volunteering.   There was nothing coercive about the therapy I received as I was allowed to ask for a break when I needed it.  My behaviorist never suppressed my stims as she recognized the function of it.  I can attest that if I did not work with a behaviorist, I would not have the coping and social skills to manage to get through college or even hold a full time job.     However, before I started working with that particular therapist, I did work with an ABA agency at school who insisted that I have an IEP  goal to stop jumping up and down without recognizing the sensory need behind it.   Luckily my mom recognized the harm and asked to have that particular agency to stop working with me.  The difference between the two styles of ABA therapy I received shows how the therapy can vary and that not all practitioners use the same method.  Asa  even addresses this in his video with Abbie's therapist.  ABA and other interventions can be very beneficial if it is used to teach the person on the spectrum new skills versus trying to make them appear more "typical."     If it wasn't for ABA, Abbie would not be able to have the same opportunity to experience the world like her typical brother.  The Maases' are able to go out as a family because Abbie for the most part is able to manage being out in public.  Autistic people of all  abilities  need interventions and support to grow and reach their full potential.

For those that believe that the Maass family are one of those "autism parents" who are not open to hearing the  insights of autistic people and are just exploiting their daughter for views.    I want to address how Asa attempts to understand their own daughter by consulting with other autistics such as Jen Msumba and Dan of the Aspie World .   By doing these videos, both Priscilla and Asa recognize the value of self advocates in trying to understand why Abbie does certain things.  As a result of interviewing Jen, Asa says that he has changed the way he vlogs by turning off  the camera when Abbie is in the middle of a meltdown saying that he doesn't want his daughter's worst moments portrayed on camera.  Unlike the typical autism parent who usually dismisses the views of other autistics by stating that they are not "like their child," the Maases recognize the similarities (as well as the differences) between Abbie and other self advocates with less intensive support needs.  The autistic woman whose channel I referenced at the beginning of this post was totally off base in her accusations of Fathering autism by overlooking the good things this channel has done in educating the wider world on autism.

Another instance  I know of in which this popular autism YouTube channel gets a lot of backlash from self advocates is the discussion Abbie's  struggles with specific hygiene tasks.  A specific example of this is in regards to the potty training video Asa puts up and discusses in detail  Abbie's toileting routine.   Self advocates point out that the discussion of Abbie's potty training issues on a public platform like Youtube is dismissing her humanity and right to privacy regarding those matters.    As an autistic person,  I can understand  this perspective as I would be humiliated if my mom started a Youtube channel documenting my early potty training struggles as well as showing footage of me sitting on the toilet.    A person's toileting issues such as incontinence as well as needing assistance with those things is a delicate matter that should be treated with respect and dignity.  Just because someone has a disability like autism and can't give consent easily, doesn't mean we should not respect their privacy.    

    On the flip side I can understand Asa and his intention of making such a video.  I can see how it can be educational to someone who is not familiar with the challenges autistic people face in learning crucial life skills like using the bathroom that most people take for granted.   A lot of people are curious about these types of issues or are looking for tips to use on their own child.  By watching their videos , I really believe that Asa made that video as a tool for education and not to intentionally embarrass Abbie or put her in an awkward situation.  However, I can see how other people can see it as exploitation or not respecting Abbie's right to privacy.  But as I referenced earlier,  Asa changed the way he formats his vlogs by not filming Abbie in vulnerable situations (e.g. the bathroom) as a result of talking to Jen.

The Fathering Autism situation leads me to the next point in this blog on the intense and deep division between self advocates and parents.   On one extreme you have autism parents who believe autism as a disease that needs to be cured.  They dismiss autistic self advocates with lesser support needs of not knowing what "real autism" is.  Some parent advocates will go so far as to question the legitimacy of the self advocate's autism diagnosis and are also dismissive of the actual and legitimate support needs of these individuals.   On the other side, you have autistics who are against all types of therapy and interventions and see autism as a "difference" rather than a disability.   They feel that parents are hogging the autism spotlight and believe that any parent that advocates on behalf of their child assumes they don't have their child's best interest at heart.  I have heard of some instances of  autistic runned Facebook groups shutting people out if they disagree with some of their viewpoints .   Others will simply refuse to listen to the viewpoints of any neurotypical in regards to autism.  As an autistic self advocate who is passionate of making the world a better place for those on the spectrum,  I feel these extreme approaches to advocacy employed by both groups is harmful to the greater autism community.  It doesn't get us anywhere and it overlooks some of the similarities both groups have.  Autism is a wide spectrum with so many different viewpoints which is why it's important to be open minded to hearing from different perspectives rather than tearing each other down.   The extremism that exists in the autism community was apparent in the actions of the autistic woman  making videos accusing every member of the Maass family of child abuse.  The way this woman uses her autism diagnosis as an excuse to make slanderous claims is very despicable and makes me and other self advocates look bad.  I am afraid that parents won't want to listen to us for fear that we will accuse them of child abuse.  I also want to make clear to not let one bad apple turn you off from self advocates as a group.  Autistic people have different advocacy styles from one another and not all advocates share the same opinions.  This is why I stay away from advocacy groups that take extreme all or nothing approaches.  I like to be part of groups in which self advocates and parents work together in unity.

The reason why I watched FatheringAutism in  the first place was because I wanted to learn more about  someone living with severe autism and the challenges they have to go through.   I have no  experience of what it's like to live as a nonspeaking person with autism  where it is hard to express complex thoughts as well as needing every task broken down into simple steps.  What I love about Asa and Priscilla as parents is that they continue to push Abbie to become independent so she can have the best life possible as an adult.  Unlike a lot of other parents of  children with autism with high support needs, they don't paint Abbie's life as tragic and don't sulk at all the things she can't do.   They continue to persevere even when things get tough.  I've learned a lot about the challenges that people who are severely impacted by autism and what their families have to go through.  I also realize some of the similarities I share with Abbie in regards to sensory issues, anxiety as well as being a female with autism.  I also feel that Asa and Priscilla are good parents and I don't look down on them for using ABA on their daughter.     It also makes me happy that Abbie is now able to enjoy going out into public places as a result of ABA and not be stuck secluded at home.    Her world gets bigger and people get more comfortable with Abbie the more she goes out into her community. To discount those theraputic gains I feel is robbing Abbie of an opportunity to take part in the world.  I also love that Asa uses his channel's reach and fan base to promote some Autistic runned Youtube channels  like Rebranding Autism.  He uses his position as an autism parent to help close the disconnect between self advocates and parents.  The message that Asa tries to promote through FatheringAutism  is so important for people to hear.  

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.

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."

Why autism is a feminist issue

According to some statistics by the CDC, autism is five times more common in boys than girls.   I don't know if this is a true statistic  but after reading many articles it probably has to do with a biased diagnostic criteria that caters to males.   Many of the women interviewed in these articles report that they received many psychiatric diagnoses before finally getting a diagnosis of autism.  This usually happens around young adulthood.  Perhaps the late consideration is due to the difficulty of diagnosing girls since they are better at masking their autistic symptoms than boys.  I am very lucky to have received my autism diagnosis in early childhood and did not have to go through elementary, middle and high school years unsupported and misunderstood.  Unlike the women mentioned in the articles I read, I was not good at masking my symptoms and did not mimic the social behaviors of my typical female peers very well.  I had a lot of stereotyped and repetitive behaviors and had to be taught  social skills to be able to navigate the complex social world.  Despite being diagnosed early, I still faced various challenges due to the fact that I was a female.  The social skills groups I was a part of as a child were composed mostly of boys.  In fact there was one group in which I was the only girl which made me feel incredibly isolated because I could not identify with the boys in the group.  This gender disparity in autism services and diagnosis should be given more attention. Since there are a lot more males on the autism spectrum, researchers tend to only include boys in their samples which results in less knowledge on how autism affects girls and women as well as interventions that address the unique needs of this population.     In my personal experience,  I wish more autism interventions were more relational or companionate in nature than the typical emphasis on skill building. that accompanies  traditional behavioral and social skills therapies.   What I mean by "relational" is interventions that target social and emotional development such as mentoring  with an older female peer or a older woman (either someone who is neurotypical or on the spectrum) who can act as a "big sister."   The big brother/big sister concept is already available to at-risk youth and I feel that this type of mentoring would also benefit young women and girls on the spectrum as well.   Another form of support I would like to see is for autistic women and girls to form a "sisterhood" or alliance with each other.  As a young woman on the autism spectrum, I feel it is important for us to support each other since we have a lot of shared experiences and we can lament of how hard it is to find other females on the spectrum since we are a minority in the autism community.  From writing this post, I am not saying that behavioral therapeutic interventions are not important since behavioral therapy has taught me the tools I need to navigate the school and college environment.  But, behavioral interventions are just  only one-part of the picture and cannot address all the complex emotional needs and challenges that come from being a female on the autism spectrum.    

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.