Movie Review of "Please Stand By"

A few weeks ago, I had the privilege to watch the film"Please Stand By" which is the first ever fictional representation of an autistic female protagonist.   When I first heard about the film last December, I was excited and looking forward to its release because with the exception of the Temple Grandin movie,  there hasn't been any films or t.v. shows made about females on the spectrum.  Most film and t.v. shows like Atypical or The Good Doctor tend to feature white autistic males as protagionists.   To give you an overview on the plot, the film is about a 21-year old woman named Wendy (played by Dakota Fanning) who resides in a group home with her dog Pete and is a huge Star Trek fan. She has a job at Cinnabon. The bulk of the film focuses on her journey from San Francisco to L.A. to turn in her Star Trek script to Paramount Studios.  Throughout her pilgrimage, she encounters obstacles that she must overcome.  It is film about passion, confidence and self determination.

Overall, I really enjoyed the film and was impressed with how they developed Wendy's character.  I liked that the writers and directors portrayed Wendy as a full fledged character with interests, passions and feelings instead of a checklist of symptoms from the DSM.  Too often, I feel that the autistic characters in most movies and television shows are portrayed in a way in which their deficits are highlighted which evokes a sense of pity and disdain from the viewer.  In the characterization of Wendy, there was a nice delicate balance between showing the real challenges that autistic people have along with their capabilities. 

As an autistic female who is also in her 20's as well, I relate so much to Wendy.  We both have to struggle to work hard to navigate a world not built for us, we're both passionate about our special interests (for me it's characters such as Disney or Hello kitty while for Wendy it's Star Trek) and that we both have stubborn and determined personalities.   We're both at similar levels in terms of how autism impacts us meaning that we have normal speaking abilities and self care skills and can easily pass as "normal."  Yet, we still struggle with certain things in our daily lives and we still need supports to manage effectively.  In that sense, I liked how the movie shows Wendy as capable and independent (she is able to navigate the bus system and hold a job at Cinnabon but can't live on her own) but does not overlook or "gloss over" her support needs.  This is unusual because autistic people who are able to "pass" in society are often portrayed as having no support needs at all.  Another aspect that I can relate to Wendy is that we are both good writers.  Wendy spends most of her leisure time writing Star Trek scripts.  I also spend part of my leisure time writing blog posts and articles.  Writing is a way for us to really express our inner thoughts and beliefs and reveal how we process the world.

Although I enjoyed the film, there are a few caveats or things that particularly made me feel uncomfortable as a viewer as well as an autistic person.  The first thing was Wendy's living situation.  Wendy lives in a  group home with four or five other residents.  I felt the portrayal of the group home was not realistic.  The home she lived in was very nice and spacious (big lounging areas, nice big rooms for each resident) and had the euphemistic name "Bay Area Assisted Living Facility."  While there maybe a few homes like that, the reality is that most group homes are not as luxurous and "posh" as the one in the film.  In fact, I hear stories of people who are unhappy with their group homes and the limited control they have as well as stories of abuse and neglect.   Even Wendy herself is resentful of the limited choices she has in her home like the fact that she has to "have pizza on Thursdays even when she doesn't want to" or that she "can't watch t.v. when she wants to."    It would be nice if Wendy  had a supported living situation in which she lived in her own apartment but have support staff to come assist her with daily living activities.  She would have a little more freedom and feel more integrated into her community.  Not all autistic people live or want to live in  congregate living facilities.  To glorify such living arrangements overlooks the fact that autistic people who need help to live in the community can still live independently.

Another aspect  of the film that  made me uncomfortable was how people mistreat and took advantage of Wendy.   Don't get me wrong, this is the reality for a lot of autistic individuals in terms of people can be mean, hostile and apathetic.  But it was the fact that Wendy came across one mean person after another along her journey from the bus driver who talks down at her for not knowing that she had to purchase a ticket before boarding the bus to the receptionist at Paramount studios who refused to let her turn in her Star Trek script because it was not mailed in despite being before the submission deadline.  We all come across people who don't understand or who are downright hostile to our differences, but realistically we don't come across that many mean people every hour in a short period of time. 
The part that was the most uncomfortable for me to watch  is that everyday strangers were not willing to take time out of their day to assist her and expect Wendy to "figure it out" on her own.  The only nice person was the elderly lady who chastized the cashier of a liquor store for ripping her off over a bag of candy and offered her a place to stay when she found out Wendy was traveling by herself.   The fact that only one person was nice to her reflects a very sad truth about how self absorbed and apathetic people are in 21st century American society.

Perhaps the biggest person in Wendy's life who mistreats and undermines her was her sister, Audrey.  I felt it was awful that her sister viewed her as  dangerous and that she was afraid to let Wendy near her baby daughter.  In the film, Wendy demonstrates no such destructive behaviors  besides having a meltdown and in which she self injures herself for the very reason of  Audrey refusing to let her live with her family.  There was no justification for Audrey to view Wendy as "dangerous" just because she has meltdowns.  On the positive side, at least her sister changes her attitude about Wendy in the end and eventually lets her see her niece.

Overall, I really enjoyed the film.  Not only because it was a film about an autistic female, but also because it was one of the few that didn't rely on stereotypes about autism like many films about it.  I like how Wendy proves the misconceptions that her sister as well as her therapist/house manager Scottie wrong by showing how resourceful she was in navigating her journey from San Francisco to L.A.  in order to submit her Star Trek script before the deadline.  In an interview with the site Geek club books, director Michael Golamco took great care in making Wendy as "fully human" as possible.    When watching this film, this was evident throughout the plot and was a theme throughout the whole movie.  He was able to keep the audience entertained while portraying an authentic and genuine narrative about autism.   If you haven't seen the movie yet, I recommend you watch it.  You can view it on-demand on Amazon or Itunes.

Autistic female critiques Spectrum News article "Girls with autism need help honing social skills in realistic settings"

Recently, Spectrum news  (a website that publishes news regarding the latest research on autism spectrum disorders) published this article written by Rene Jamison who runs a social skills program for young women on the autism spectrum called "Girls Night Out."  In this article, Jamison stresses that autistic girls need help navigating social rules in more real world settings. As an autistic female who's had some form of a social skills intervention similar to the program being discussed, I find Jamison's article and her underlying argument  very problematic and ableist.  I do agree with the title of autistic people needing more real world experiences to practice social skills.  It is  her solutions that I disagree with.  She proposes the age old idea that autistic females need to learn to socialize like their NT female peers in order to have successful lives.  I find this very destructive on a psychological level because it indirectly tells autistic people that the way they socialize is the problem instead of the rigid social expectations and categorizations put forth by a neurotypical society.   In this post, I am going to explain why I find Jamison's position problematic from an autistic's perspective.

The problem with a lot of the current social skills interventions especially  the ones built for autistic females is that there tends to be a push of "gender" or "age" appropriate interests.   Upon further research of the curriculum of the "Girls Night Out" program that is proposed  in this article, one of the topics covered is  "fashion" and "makeup" which are both stereotypically feminine activities.    When I was an adolescent, my behaviorist and I along with one other girl on the spectrum did outings to the mall to female clothing stores and other activities  which is a considered to be a "real life setting" in learning teen culture.  This  exposure  made me temporarily traded my interests of Hello kitty and Disney Princess for  fashion and designer clothing so I can fit in with my female peers.    Looking back as a young adult, it was a painful process of letting those interests go during high school and it contributed to long term feelings of anxiety, inadequacy and low self esteem.  To this day, I am still dealing with these negative emotions surrounding my love of "little girl" characters such as Frozen, Hello Kitty etc.  Neurotypical teens aren't told what to like or are given didactic teaching lessons on fashion and makeup.  In fact not all NT girls are into fashion and makeup.   This is the point that I think is missed in Jamison's article.

Another issue that I have with Jamison's intervention and others like it is the need to get autistics to feel comfortable socializing in a group or what is known as a "peer group."  As an autistic female who is more introverted and has sensory processing issues, the idea of being in a unstructured social group was a hellhole for me.  In high school, I was made to join clubs as well as sit with a group of same aged peers. I felt so overwhelmed with the numerous conversations that were going on at the same time that I didn't know when to join in.  I also feel that in groups, you don't get to know people on a more intimate level as well as them not getting to know me.  This is why I preferred one-to-one social situations as opposed to group settings because aside from getting to know people on a more intimate level, you get the individual attention and it's a lot easier to socially manage from a sensory perspective.  To sum this paragraph, some people on the spectrum (just like in the general population) are  introverts, and they shouldn't be forced to socialize in a group setting if they don't feel comfortable.

Perhaps, the biggest problematic element of Jamison's article, is that I felt she used the article to promote her "Girls Night Out" program.  In that sense, I feel there is a personal bias as well as self interest from the author in writing this article.    I always get suspicious (as well as cringe) whenever a clinician writes an article on a website/platform that highlights our "deficits" in order to promote their program or therapy.  The underlying theme of these articles is that autistic people won't have a good future unless they participate in the program or therapy.    It is this very message that is very damaging as an autistic person.  She also contradicts herself towards the end of the article  by stating that the long term effects of her social skills program is unknown.  On the plus side, at least she admitted this shortcoming of her program.  As an adult autistic advocate who's been through social skills training, I can provide my insight that these interventions are part of the reason of long term issues with anxiety and insecurity.  It is bad science that a research based website such as spectrum would allow a clinician to promote her program on their site.

In sum,  I feel that Jamison's article though well meaning,  is reiterating (in a different way) the viewpoint that autistic people are the ones that need to conform to a NT level and that we need "peer coaches" to help us learn teenage trends.  It overlooks the fact that a lot of autistic females spend most of their young lives trying to emulate their typical peers to the point of exhaustion.  This is the reason for the high levels of anxiety and depression in autistic females.  As I stated at the beginning of this article, I do agree with Jamison that  autistic people of both genders need more real world experiences to practice their social skills.  This is why I hired a social companion/mentor to go on outings in the community to get that real world experience in practicing my social skills.  However unlike traditional social skills groups, this type of intervention is relationship based  on respect and there is no pressure to like things that are gender or age appropriate.  In fact my mentor is working with me on my self confidence about being comfortable with my unconventional interests.   Having a companion to do social outings was what worked for me but Jamison's intervention could work for some girls on the spectrum.  Autistic girls are not monolithic in which one type of intervention would be effective for all of them.  They are complex human beings with varying interests, challenges, goals and talents etc. just like typical girls.  If we truly want to come up with more effective interventions that actually help autistic people, researchers need to consult with autistic people as well as individualizing supports for people on the spectrum.

One Size does not fit all when it comes to Supporting Autism and other developmental conditions

"One size does not fit all" is a phrase that is consistently tossed around in the special needs community.   People with autism and other disabilities vary in terms of characteristics, strengths, challenges and personality traits.  Yet the programs, supports and services that cater to children and adults with autism (and other conditions) tend to take a "one size fits all" model.  Some examples of program models that take on this standardized approach are group homes, social skills groups etc.  These programs are designed based on "deficits" and not designed from the needs and wants of the individual in mind.   This goes against the "spectrum" model of autism.

The problem with one size fits all programs is that it only effectively serves a few but not everyone.  These programs are not designed around the person's wants or needs.  Instead they are designed for the convenience of those who run the programs or distribute the services.  A lot of programs don't even consult with the population that they intend to serve but instead rely on the insights from  professionals, parents and researchers.  They also rely on "evidence based practices" when designing  programs and services for developmentally disabled individuals.  Don't get me wrong, these perspectives are important when designing services and interventions for individuals on the spectrum.  It becomes problematic when they are the only ones consulted  and apply their insights  to the experiences of all individuals on the spectrum.  Parents and professionals have limited knowledge of what autistic people (or other conditions) actually want or need.  This is why it is important to consult with autistics (or other disabled individuals) when designing support services for individuals with developmental disabilities.    It is a big reason why outcomes continue to be poor for people with autism and others with developmental disabilities.

In my experience  transitioning out from the school system into adult services, I was disappointed in the options that were available to adults.  This was evident in the day programs that my mom and I checked out in which people of different ages and abilities were all clustered together doing the same program. Another example of the "one size fits all" mode in action was when we checked out a postsecondary transition program that aims to help young adults with disabilities learn independent living skills a few years back.  The problem with the program was that there were "mandatory classes" that I had to take during the day which made me pursue my studies at a later time which was an inconvenient for me .    Another issue with the program was that they had a jam packed schedule for each of the clients.  There was always an activity scheduled from the morning all the way up to the evening.  I am the type of person who needs down time in between activities that demand a lot from me.  My sensory issues as well as how I process my environment make keeping a dense packed schedule overwhelming.  This leads me to my next point in this post about the lack of choice and control.

Perhaps the most problematic element of "one size fits all" program models is the lack of choice and control that characterizes most of these programs.  In the transition program I described above, I had to take "mandatory classes" on social skills and sexuality even though I've already been taught a lot of social skills and I was not interested in pursuing a romantic relationship.  To me, this would be a waste of time.  Another all too common scenario is people living in group homes not being able to choose their roommates, support staff as well as when they can eat, sleep etc.  I love to have control of all those things like choosing who I live with and who will support me.  People with developmental disabilities have their own preferences, needs, goals etc. that programs need to honor.  For example, one person might  do well in a group setting while another person might be more introverted and does better in a 1:1 ratio.  In programs and service designs that utilize a more standardized model, one person might get their needs and wants met but another person might not get the right type of help.   This is why most individuals with autism and other related conditions continue to have poor outcomes and are dissatisfied with the current options that exist. 

The good news is that we are in a paradigm shift in designing services and supports with the needs of individuals with autism and other developmental disabilities in mind.  There is a federal push that housing and other support services should be integrated and centered around individual needs.  I also wrote an earlier post on the California Self Determination law and how it brings back control  of state funded supports back to clients and their families.  Both these service designs recognize the extreme variability of individuals with autism and other disabilities and also gives them a sense of agency in designing their services and supports.  Adults without disabilities are able to make choices to shape their own lives so why shouldn't adults with developmental disabilities be allowed to make choices (that are appropriate to their level and with support from others) that can lead them to live more productive and fulfilling lives.    I am lucky that I was empowered to to live a self determined life by learning self advocacy skills to tell people my needs and wants and my family honored my choices and preferences. Some individuals with disabilities are not as fortunate to learn about self determination and to be empowered to make choices for themselves.   The federal push to make services and supports for individuals with disabilities more individualized and person centered sees the individual with a disability as a human being first before the diagnosis. 

On Recovery and "Optimal Outcome"

In 2014, a New York Times article was published about children who have recovered from autism.  I know this article was written three years ago but still is relatively recent given that we only just recently started giving more attention to autism acceptance .   It is sad that a majority of mainstream media outlets like The New York Times can't preach acceptance and neurodiversity.    The emphasis on "recovery" implies the prevailing medical model on autism as some sort of disease.  It dismisses the fact that autism is a lifelong condition that will require supports and accommodations for each life stage.  The media's attention on autism recovery is a dangerous road to go down and can have some detrimental consequences for actual autistic people particularly for adults on the spectrum.  With that said, I will write about why the notion of an "optimal outcome" and "recovery" are destructive to the autistic population.

First, let's talk about what an "optimal outcome" is.    In the eyes of the neurotypical society, an "optimal outcome" is defined as an autistic person who can assimilate and achieve "normal" milestones such as having friends, going to college, living independently etc.   But are those on the spectrum that are described as having an "optimal outcome" necessarily happy and satisfied than those who are more significantly impacted by their autism?  Keep in mind that what is defined as an "optimal outcome" is based on deeply ableist notions of success.   In fact even those labeled as "recovered" from autism still struggle with various learning and mental issues.   What many experts and parents may not realize when they say a child has "recover" from autism is that they may be "camouflaging" or that they have learned various coping and social skills to blend into society.  However many don't understand the amount of energy it takes to have this persona of being normal and the toll it takes on our mental health. 

I am one of those on the "spectrum" that might be labeled by others as achieving the "optimal outcome" because I have learned so  much coping skills as a result of therapy to be able to pass in society.  In a brief encounter with me, you might even think that I "recovered" from having autism.  However, as I have written in my previous post, I struggle with constant anxiety and self doubt as a result of  learning early on that the only way to be truly accepted is that I fake "neurotypical"  In fact, at the end of each day after work, I feel exhausted from putting on this persona that on the weekends I feel the need for some downtime to recharge my energy.  In sum, while faking "neurotypical" enabled me to accomplish life goals such as getting through college and holding a full time job, the cost of that is the constant anxiety and the fear that  people will be dismissive of the fact when you need supports and accommodations.

Another major consequence on the focus of "recovery" of autism and the emphasis of an "optimal outcome" is that it allows some opportunistic service providers who practice behavioral modification strategies  to pray on the hope and desperation of families of newly diagnosed children.  Often these therapies such as ABA or Discrete child training often require a grueling schedule of 40 hours of week and is a big time commitment for parents.  This can be expensive for a lot of families which can require them to take out a loan in some cases.  The intrusiveness of this therapy regime may not be good for small autistic children who often need large amounts of downtime.  There are many other options that are less intrusive, demanding and compliance based.  There are options like floortime/DIR teaching, music therapy as well as ordinary occupational therapy, music therapy or speech therapy.  Expecting autistic children to carry on a 40-hour a week schedule is unrealistic and denies them from having a childhood as well as being disruptive to the family unit. 

A third consequence is that the strong emphasis on recovery and early intervention is that it diverts attention on to the needs of autistic adults.  As we are well aware, there is a crisis in adequate supports and services for adults.  This is because it is assumed that if autism is treated intensively in childhood, they wouldn't require intensive supports when they reach adulthood.  As a result we have less knowledge of what kind of supports and challenges that adults with autism face,  It also hurts autistics who were diagnosed as adults since there is very little that could help them.  Autism is a lifelong condition and we don't ever outgrow it.

It is ableist to emphasize "optimal outcomes" and "recovery" for autistic individuals.  Having autism is deep within our genes which means it is part of the person.  We need to stop defining self worth for autistics of how much they can do for ourselves or how many milestones we achieved.  If there was a cure for autism, I would not take it because I feel that it would mean taking a part of my identity away from me.  The reason why people with autism and other disabilities were placed on this earth is because we are here to teach society that there is more than one way to live a great quality life. 

Mental Health and Autism: Why Acceptance is important

It is well known that individuals on the autism spectrum are likely to have comorbid mental health issues such as depression and anxiety.  However, it is a less discussed topic surrounding autism compared to behavior and social challenges etc.  As an autistic young adult with anxiety,  I can give some insight on the high prevalence.  A big part of it has to do with how we were slowly socialized either implicitly or explicitly that an autistic lifestyle is something that is defective and therefore it needs fixing.  In fact this article sums up the strong link of autism acceptance and the development of mental health disorders.  In other words, lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.  However, mental health and having a positive relationship with an autistic identity are not a priority when helping autistic people.  If mental health issues are mentioned in regards to autism, they are are addressed in a pathological way.  In this post I am going to write about my experience as someone on the spectrum that lives with mental health issues.

I have written about my struggle with anxiety in an earlier post.   However, in that post I talked about some of the symptoms of how my anxiety  manifests.   I never written that extensively about  the root cause of  my mental turmoil  being related as lack of acceptance of being autistic.   Although I come across as a "confident self advocate"  when I speak about my life experiences, the truth is that I struggle with deep self confidence issues and actually doubt some of my own advice that I give out sometimes.  There is a monster voice in my head that constantly tells me that "I am wrong" or that "I am not deserving of support"  and other negative scripts.  I constantly say "I'm sorry" to my family or others whenever I feel that my autistic mind takes over.  My monster voice is always constantly bringing me down by saying that I am not "entitled to my feelings because I am autistic" and battles with my positive voice or the voice of confidence.  I am so hard on myself and I blame myself for all the challenges that life brings me.

Lately, I have been wondering of how did I become this way or how did I develop such negative thinking which resembles mental self injury.  I then realize that the negative scripts and inner anxiety that I developed in my head today were the result  of years  of growing up and slowly realizing that disability is something that needed to be fixed.  Unlike the children growing up today with the neurodiversity framework, I did not come of age in which autistic advocates were respectfully regarded as the "true experts."   As much as I hate to blast some of my lovely support people like my therapist or my family members on this blog post, they unintentionally through no fault of their own, contributed to my negative script that I have for myself.    Before I go ahead and critique some of the intervention that I received,   I want to make clear that I am thankful that I have gotten interventions that enabled me get to the point where I am today.  The social skills, emotional and self advocacy skills that I learned during my adolescence enabled me to be the strong advocate I am today.  But for autism intervention, there is always room for improvement. 

Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment.  It was reinforced through behavioral therapy and the school system.    A few examples that I can remember was that I was pressured to join clubs and sit with a group of kids because that is how typical high schoolers socialized.  I was discouraged from socializing with adults such as the other aides at school or the computer teacher in middle school because it wasn't considered appropriate. I was socialized to learn about  the fashion and other interests that teens through social groups that my behaviorist made (e.g. the "cool" or "not cool" chart) in an attempt were to make me "fit in" better.  All these experiences and others have taught me that I should camouflage and suppress my natural self because I should appear normal.   Friends were chosen for me because people wanted me to be more social. I went along with the recommendations of my support people and parents and pretended to live as a neurotypical because I thought they knew best.  I tried all I can to suppress my natural way of being at the expense of my self esteem and acceptance of my unique neurology.

What the people who helped me didn't realize at the time was the future implications of my mental health as an autistic person.  At the time, the focus  was making me as self sufficient  and socially adjusted as possible by the time I reached adulthood that nobody ever considered what they were doing could unintentionally  affect my self identity and self esteem.  All this energy camouflaging myself in order to appear " normal" became mentally exhausting.  I started second guessing myself and internally beating myself up  over minor social infractions.  This is a big part of my anxiety living as an autistic person.

My experience with special education and ABA shows the dichotomy of interventions that are designed to optimize the quality of life individuals on the spectrum can also adversely impact  the mental health and self acceptance of an autistic identity.    This is what a lot of self advocates are concerned about behavioral modification programs because of the long term affects it can have on mental health in regards to autism.  This is why we need to preach autism acceptance and center self advocates in developing appropriate supports for autistic people.  That means we need to take their insights, feelings and desires into account instead of dismissing them. Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity rather than a problem that needs to be fixed.    Acceptance means a world where autistic people don't have to camouflage to appear neurotypical.  Acceptance also  means giving supports and accommodations to autistic people of all abilities and support levels when it's asked.  If  the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems (though not all) that  autistic people have will be lessened.

A self advocate's response to the divide between autistic adults and parents at a recent Government Committee meeting

This is a opinion/personal response to this recent article on NOS magazine  on the adversarial exchange that took place between autistic self advocates and parents of autistic children at a recent Interagency Autism Coordinating Committee  meeting which is a governmental body that sets the direction on autism research.    The clash between autistic adults and parents at this meeting is a reminder of the ongoing divide that continues to exist in our community.  From reading this article, I am saddened that there are some parents in our community that can't fathom the idea of  self advocacy or the idea that autistic people can attend and sit on committees and offer their opinions .  I know I am biased from writing this post since I am writing from the perspective of a self advocate, but I want to offer my two cents at the outrageousness of this meeting and the direction the Interagency Autism Coordinating Committee.  I also want to highlight some of the postives like how self advocates John Elder Robison and Sam Crane and nonautistic researcher Edlyn Pena  came up with excellent responses and defended neurodiversity and its principles of rights and humanity for all autistics.

I am outraged that a prominent governmental agency would allow autism warrior parents such as Jill Escher and Alison Singer to continue to discount the voices of autistic adults like myself.   Both of these women are known to hold anti-neurodiverse sentiments on autism and think that the only legitimate autism cases  are only those who are nonverbal and have significant support needs.    For instance,  Escher made a controversial autism matrix this past April that reinforces functioning labels while Singer made a disturbing comment on camera of  committing a murder suicide with her high support autistic daughter in earshot of her comment.  Despite the controversial histories of these mothers, they continue to hold high positions as executive directors for various autism organizations.  Perhaps what is even more reprehensible, is that Escher and Singer continue to make assumptions about autistic ability and support needs.   They believe that autistic people who can sit in a meeting and speak their opinions must not have medical problems such as epilepsy and G.I. issues or not need support etc.  Both Escher and Singer also assume that those with "intense support needs" also have co-occuring intellectual disabilities and therefore cannot understand the logistics of an official governmental meeting discussing research priorities.  These autism warrior moms think they are advocating for the good of autistic people but in reality I feel they are furthering their own selfish agendas. 

On the positive side, I applaud self advocates John Elder Robison and Sam Crane for defending the autistic population and to try to establish unity with autism parents.    The humility of Robison's comment about the duty he and other self advocates on the board of the IACC have to ensure that autistics of varying levels of support have the chance to live a great quality of life.  Of all the "high profile" self advocates out there, I admire John Elder Robison because he doesn't attempt to represent only one side of the spectrum (which is a common among those diagnosed with "Aspergers") and actually cares about autistics who are significantly more impacted  than he is.  When we do autism advocacy, we  often consider the whole entire spectrum which includes those who are nonverbal and requires significant supports in order to live in the community.  This is also what Sam Crane said about the need to presume competence in those who can't speak verbally and giving them a seat at the table at policy meetings.  Self advocates exist because we believe that all autistic people of all abilities are deserving of  rights and supports that will optimize their quality of life. Support shouldn't be a luxury available to only a select few but a necessity for all individuals on the autistic spectrum. This is a standard that I attempt to live by whenever I advocate for autism.

Another positive thing that came out from this meeting is from autism researcher Edlyn Pena from Cal Lutheran University.   She made two excellent points about diversifying the board of the IACC. She advocated that we need more autistics who type to communicate to be on the board of the IACC because they are underrepresented in all autism conversations.  She also made a comment of getting more autistic voices of color on the board, since autistic people of color and their families are relatively absent on boards of autism and other disability organizations.  As a person of color on the autism spectrum, I applaud Pena's statement since she is one of the few that is keenly aware of the lack of racial diversity in the autism community.

The relative absence of self advocates (only three out of the 31 board members are autistic) on the board on prominent governmental boards such as the IACC that affect research priorities shows why autism research does not align with the interests and desires of autistic people.  It is still sad that parents who have bigoted views on autism are still permitted to express them which causes a division for our whole community.  I am not saying parent involvement in the autism advocacy movement is not important but it should be secondary and alongside autistic self advocates.  We need more advocates from different backgrounds, abilities and support levels to be on boards on prominent autism organizations to offer their opinions about policy issues that affect our day to day lives.  There is the saying among autistic self advocates that "nothing about us without us."

Stop treating DIsabled People as Burdens

This topic has been on my mind lately and I have had a recent conversation with my mom about this very topic.  It is how society views people with disabilities as burdens.   This is evident in media portrayals of how people with disabilities  can be a financial and emotional drain on their caregivers. I wish I can say this societal attitude is a thing of the past given the more talk on acceptance of the disabled.   Unfortunately, this is not the case as there still seems to be that perception in the 21st century.  People with autism are not exempt from this negative societal perception because of our social challenges and our behaviors.    It is from my lens as an autistic person that I will write about some of the negative effects that the "burden" stereotype can contribute to the individual living with a disability.  I am also going to discuss the equity principle in relationships which is an issue that affects autistic people and how it can contribute to the negative societal image about us. 

As I stated before, autistic people are often portrayed as being burdensome and needy.  This is evident in tragic stories of how parents murder their autistic children; or this autism everyday video  in which parents lament of how autism creates a lot of financial and emotional burden on the family unit.  There  is even an exclusive disorder called called Ongoing Traumatic relationship syndrome or the Cassandra affect which affects neurotypical  significant others or family members which results from the "emotional burden" of living with an individual on the spectrum.      Of course the so-called "autism experts"  capitalized on the plight of parents and others in the autistic person's life and came up with various autism interventions such as ABA and social skills training groups that aim to make autistic people less burdensome.  Even some of the transitional life skill programs that are currently out there for young adults on the spectrum that aim for self sufficency.    All these programs have the end goal of making the individual "less burdensome" to be around. 

The problem with society consistently portraying autistic people (or any disabled person for that matter) as burdens  is that it blames that individual for all their challenges related to their disability.  It misses the fact that since people with autism have different brains, they have limitations that neurotypical people don't have.   To truly understand where I am coming from, imagine that you live in a world that was not built for you.   Social interactions don't come naturally to you, so you have to work twice as hard   to figure out each social situation.  Managing complex emotions is hard, so you have to use extra energy to manage your emotions to get through a work or school day.   Due to sensory issues, your brain feels constantly bombarded by all the information that comes in from the outside world which leads you to feel exhausted.   Executive functioning  doesn't come naturally to you and as a result  you get completely overwhelmed with the daily responsibilities of adult life.   At the end of the day,  you feel exhausted and you lack energy to do other things.  When you have down time, you prefer to spend it alone.  This is what life is like for someone like me every single day.  I have to work extra hard in order to function and meet the demands of  adult life.  Even with all the effort I put in, it still feels like it is never enough to meet the constant social demands of adult life.   So when NT people often complain about the social challenges of a child or adult on the spectrum as being burdensome, they are dismissive of the fact that we don't intentionally mean to be a burden on other people but that we sometimes get overwhelmed living in a world dominated by neurotypicals.

Another problem that I have with the burden stereotype is that it carries a stigma of asking for the support and accommodations that will make life easier for autistic people.  It misses the fact that all human beings are interconnected and that we will depend on someone for certain situations or times in our lives.    Having gone through life, I slowly picked up on the fact that if one is dependent on others for assistance, it is considered burdensome on other people.  An example of where I felt I was a burden was when I registered with the Disability office when I transferred to a four year University.  The lady who was in charge of the center at my college came across as cold and uncaring and viewed me as a "burden."  My experience with the college disability center shows the irony of  institutions and offices that are suppose to provide support services for the disabled often view the population that they serve as "leaches" on the system.     

Even with some of my social relationships, I try not to become a "burden" on them so they will continue to see me as a good friend and a likable person.   This is why I dislike  the equity principle that so often governs relationships.  This principle of equity makes the assumption  that both people in the social relationship give or take at equal levels.   In other words, it assumes that both people in a social relationship are at an even level playing field.   This does not take into account the limitations that one's disability imposes on a person.  The equity principle explains why I try to avoid bringing intimate issues related to my disability  into friendships because I don't want to be perceived as someone who is "too needy" or "attention seeking" ,  I cautiously keep track to make sure that I am giving equally in my share of the deal in the relationship.  Unfortunately, this overwhelms me because it is an extra layer I must think about when navigating social relationships.  It prevents me from feeling comfortable with my own natural autistic self in relationships because I constantly worry that the relationship will be off of its equilibrium. 

In my own experience with the few friendships I managed to make, there were times I picked up the vibe that my friends don't want to be burdened or that they were unwilling to be accommodating if it causes a huge inconvenience to them.  For instance,  one of my friends was referencing another individual  that they personally know who happens to be on the spectrum and was complaining that the girl talks about her disability way too much.  Although she wasn't talking about me specifically, what I took from my friend's comment was that she is not interested in discussing or hearing about the challenges of what I have to go through everyday related to my autism.  She doesn't understand that when you live with a disability (in particular autism), it shapes your worldview and that you have to make adjustments just to get through the day.  It is very hard to find people where I don't have to worry about me  being a burden on them.    There are very few people in my life where I don't have that feeling and can naturally be myself.  This is why I am very selective of the people of who I let into my inner circle.   The consequence of being very selective is that it leads me to have a very small social circle . 

The feeling of being a burden on other people can have some very negative consequences for people with autism and other disabilities.  In this study conducted by Coventry University, one of the factors that lead to higher suicide rates in autistic people was the fact they felt like they were a burden on others.    I feel that this is sad that some individuals feel the need to take their own life because they feel that the people in their own life feel they are an "emotional drain.    This study also cast light on hoe autistic people spend their daily lives trying to emulate a neurotypical social relationships to the point that it leads to the deteoriation of the emotional state and self worth.    My striving to meet neurotypical social expectations is the reason for my constant anxiety in which my adrenal glands are constantly on over drive.  The stress as a result of an overactive nervous system has made me have some G.I. issues like constant bloating and constipation.    I'm sorry I got a little too personal on my last sentence, but I want to portray some of the emotional and physical toll that the body has taken from working extra hard to be a functional member in society.

To conclude this post, we as a society need to stop portraying people with disabilities as burdens.    My mother has given me the best advice in that everyone is interconnected and that we are all dependent on other people.  We need to emphasize support and accommodations that will alleviate the stress of living with a disability.  Lastly, we need to teach neurotypical people to be more compassionate and empathetic towards those with disabilities.  This will help them understand that we don't mean to be burdens and that there are going to be times that we are going to be more dependent on them then they are to us.  We are doing the best that we can but sometimes we get overwhelmed with life.   I believe that every human being is deserving of acceptance and compassion in this world and those two principles shouldapply to everyone rather than a select few.