Sunday, November 19, 2017

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.

Thursday, November 2, 2017

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."





Saturday, October 28, 2017

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 childrenor 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.

Sunday, October 8, 2017

Why I relate to the tv show Speechless as someone with Autism

I recently wrote about the lack of realistic portrayals of autistic characters in the media   This post will be about a t.v. show that does it right in painting a real and honest story of disability.  I know I'm a year late to write this review of the television sitcom on ABC called Speechless.     Even before the t.v. show launched last year, I was excited to watch Speechless because it would be the first show to consult with the disability community and cast an actual actor with cerebral palsy.   For those who are unfamiliar with Speechless, it is taken from the viewpoint of a 16 year old teen boy with cerebral palsy named J.J. Dimeo who uses an electric wheelchair to get around and communicates through a letterboard that is attached to his chair.  His family of five moved to a small dilapidated house in an affluent Orange County suburb so he can be mainstreamed in a public school for the first time with an aide. When the aide chosen by the school district was not a fit for J.J., he decides to ask the school janitor to be his support person at school.  The show comically explores the ignorance most people have towards disabled individuals like J.J., family dynamics especially when it comes to J.J.'s two younger siblings as well as their domineering mother to self determination in which J.J's mother learns to stand back and let her son make some decisions for himself.  When watching the first season, I was shocked about how much I was able to relate to the main character J.J. Dimeo even though I have autism and my disability is not as physically involved like J.J.  I have watched so many shows featuring a character with autism and I felt that for the first time I was glad to finally find a t.v. show I can relate to that paint's a more realistic portrait of living with a disability without it being overly dramatic or the main character's disability is the butt of all jokes in which the audience is made to laugh.  I will now discuss some of the elements of how I relate to the television sitcom.

The first part I can relate to J.J. the main character was his relationship with his aide or support person.  Usually the subject of aides and support people are not discussed in t.v. shows or movies about disabled people.  It was nice to see J.J. bond with his aide Kenneth in the show and how he was able to select him as his support person when the first aide assigned to work with him did not turn out well in the pilot episode.  In my own experience, I always felt close to my support people whether it was my 1:1 aide in high school or my paid mentor/companion.  Although I do have friends, the complex nature and the often inconsistency that occurs in friendships can be overwhelming.   With support people, I don't feel that pressure and demand and the consistent nature of the relationship gives me the assurance that I will receive the emotional support on a regular basis.   In addition to providing a security blanket, the people who worked with me served as mentors/guiding figures.  It was so nice to have additional role models that I can turn to besides my parents.  Kenneth serves the same exact role to J.J. throughout the show as he helps him navigate the complex world of high school such as friendships, girls, people making fun of his disability etc.  Paid help such as aides are crucial to the lives of disabled people and I always felt that their work is undervalued in our society.  In fact support people can become equivalent to a "best friend" because you spend so much time with them.  It is nice that Speechless highlights their importance and how they serve as comfort to those individuals who struggle to live in an able bodied society.

Another aspect I can relate to Speechless is the subtle forms of ableism that are present both from the student body at J.J.'s school and strangers out in the community. In the beginning, J.J. was greeted by the students at school who threw a diversity carnival in his honor.  Yet, the school was inaccessible for J.J. who uses a wheelchair and the only way he can get into the building was through a garbage ramp.  This angers J.J.'s militant mother who gives a lecture to school officials about accessibility.   Another example in the show which exposes the irony of the students' inclusion friendly attitude was when the school decided to hold a school dance  on campus instead of at the beach because it did not cater to J.J's accessibility needs.  The students then turn from embracing and supporting J.J. to blaming him for ruining their fun.  This scene shows that young people who are "inclusion friendly" can change their attitude when they are asked to accommodate for people with disabilities.  The refusal to accommodate if it causes an inconvenience for people is a common thing that most disabled people deal with in their day to day lives.   Growing up and going through mainstream schooling, I have encountered and picked up on some of those attitudes from my peers.  Although no one ever bullied me, I picked up this unspoken feeling that my peers avoided me because they did not want to deal with my autism.  This was probably due to the fact that  it was obvious of how different I was due to the fact of having an adult with me at all times and my meltdowns that I would have sometime in class.  Even some of my friends in the past made statements that I conisdered to be ableist.  For instance, I used to have a girl friend who thought that having extra help (e.g. 1:1 aide, behavioral therapist) was the reason why I stood out to peers rather than seeing it as an accommodation or a source of comfort.  I felt that it was very ableist for her to make that statement because she was basing her opinions on trying to look normal and appearing "cool" in front of peers.    I like how Speechless explores the hidden agenda of  human beings behind their facade of "inclusion" and diversity.

A third topic that I felt I could relate to in Speechless is J.J.'s strong personality.  Throughout the show, the audience can see that J.J. knows what he wants and sometimes tells his overbearing mother to back off and let him make his own decisions.  He also has a mischevious and sly sense of humor which comes out in his interactions with his siblings, parents and others.  I am like J.J. in that way of knowing what I want. One of my biggest pet peeves is when people use the word "should" with me as if they are telling me that I don't know what I am doing.   I also have a very strong sense of humor and can be sarcastic sometimes.  In fact my dry sense of humor is one of my most well known qualities.  My humor entertained some of the school staff during my middle and high school years.  People think that individuals who live with disabilities are helpless don't have a sense of agency.  However, young people like J.J. and myself are proving that's not the case.  We are perfectly capable of making decisions that affect our lives.   Speechless highlights the importance of self determination for people with disabilities.

In sum, I really liked Speechless.  I see so much of myself in the protagonist.  Unlike other television shows and movies about disability. this show doesn't portray disabled people as burdens or inspirational and rely on stereotypes.    As I said in a previous post, I wished they made a show like Speechless but cast an autistic protagonist.    I can't wait to see what season 2 of Speechless has in store.



Sunday, September 24, 2017

My Graham Cassidy letter

Here is the letter/testimony I sent via email regarding the latest attempt by congress to cut medicaid funding called the Graham-Cassidy bill.  If passed, this bill can have devastating impacts on the lives of millions of Americans especially those with prexisting conditions.

 To whom it may concern,

I am a 25 year old who lives an autism spectrum disorder.  My passion is to advocate for those with autism and other disabilities and to spread awareness of issues that affect the disability community in general.   As an American who lives with a disability, I am deeply concerned about this recent bill which attempts to cut Medicaid funding.  These cuts can significantly affect the quality of life for people like myself  because we wouldn’t be able have the supports and accommodations we need to live in the community as well as getting appropriate medical and mental health care.  

Growing up, I benefitted from services and therapies such as early intervention that enabled me to achieve a lot of things like going to college, getting a job etc.   In addition, I am also a client of regional center services in California and utilized variety of the services that enabled me to get a job.  Even though I have achieved a lot, I still need support in my daily life and will eventually rely on Medicaid funds for health care as well as for housing and support on living on my own.  If the Graham-Cassidy act is passed, it would make it harder for me to access the support I need in order to make the next big step on living on my own a smooth one.  In addition, I will be 26 next year and will no longer fall under my parents’ health insurance so Medicaid funding will be crucial for me to continue to have adequate access to good healthcare.   If there are drastic cuts to Medicaid, it would be hard to imagine a great future for myself and to know that there is a safety network in place for me .   

The Graham Cassidy act and drastic cuts to Medicaid would get rid of the safety net for me and a lot of people with disabilities who rely on government funding.  Medicaid is a big  resource for regional center system here in California.  These cuts that are being proposed by the Graham Cassidy  could drastically affect programs s such as supported Living and employment as well as respite and other key services that people with developmental disabilities and their families rely on.   Families will not be able to afford key therapies that can improve the quality of life for their children if insurance doesn’t cover the cost of early intervention services. I am not writing this letter just for myself, but on behalf of those with disabilities and other preexisting conditions who are afraid to speak out.  Some people will not be able to survive without Medicaid funding since Insurance companies can charge a higher premium or refuse coverage for  those with preexisting conditions.   I do believe there needs to be reforms to Medicaid services but the Graham Cassidy bill is not the solution since it will make life harder for people with disabilities.

Best,

Christine 

Monday, September 18, 2017

My favorite autism pages and blogs

There is a lot of information out there regarding autism since it is becoming increasingly prevalent.    As I mentioned numerous times, there is a lot of deficit based articles on the disorder  that reinforce stereotypes.  I have come across a lot of these articles, facebook posts and blogs in my lifetime and I cannot tell you how many times I was left with feeling angry and insecure about my own life as an autistic person.   I know the authors behind these articles are coming from a well meaning place but make the fallacy of overgeneralizations or stating their opinions as fact.  Luckily, there are a few sources I have came across that gave the empowerment and assurance that I needed.    These neurodiverse friendly  youtube channels, facebook pages and blogs do a great job of trying to offer useful tips and insights without taking the "what works for me should work for you" view on autism.  Most of these sources are written and/or runned by autistic self advocates but I will include two parent runned blogs and facebook pages that I feel are sympathetic to the neurodiversity paradigm.  Note: This list is based on my own experience of what pages I felt were helpful.  These are entirely my own opinions and I don't get any contributions from any of the writers or organizations by promoting their work.   I also want to disclose that all the self advocate sources I list here are by autistic females due to my own experience of being an autistic female. 

Blogs, pages and youtube channels by Autistic Self advocates

1. Amythest Schaber-  I stumbled upon Amythest's channel based on a friend's recommendation.  She has a video series called "Ask an Autistic" which discusses topics like stimming, special interests, myths about functioning labels etc.  What I like about her channel and her "Ask an Autistic" series is that she wants to promote autism acceptance through her series and to combat ableist attitudes.  She also offers advice that is useful to parents of autistic children.
youtube: https://www.youtube.com/user/neurowonderful

2. Autism Womens Network- This organization is completely runned by autistic women.  As we all know, girls and women are vastly underrepresented in the autism community.  I like that their website and also their facebook page features blog posts written by autistic women.  They also feature writings by autistic women of color as well as those with an atypical gender identity/orientation as well as nonverbal autistics.  I like that this organization makes the effort to include autistic voices from all walks of life rather than privileging autistics who learned to act neurotypically or who have a special talent. 
         Website:https://autismwomensnetwork.org/
           Facebook Page: https://www.facebook.com/AutismWomensNetwork/

     3. Autistic Hoya-  This blog is runned by queer and East Asian autistic activist Lydia Brown.  She writes a lot about topics pertaining to social justice and intersectionality particularly between race and disability.  I liked that Brown herself is not only an autistic woman but also an autistic person of color which reflects my experience as well.  There are not too many role models in the autism community that are dually marginalized (e.g. being a woman and a person of color).  It is nice to find such a role model in Lydia Brown and how much advocacy work she does for a lot of autistic people.

blog: http://www.autistichoya.com/


4. Autistic Speaks-  This is a facebook page by another autistic woman Lydia Wayman.  What drew me to Wayman's blog is her outlook and views on autism are like my own.  She talks about topics like supports for those on the spectrum who are more verbal as well as the subjectivity of age appropriate interests.  I admire the fact that Lydia and her mom created a support system that was right for her which gives me hope  that it is possible to find the right fit especially when the funding and availability of supports for (especially for those with lesser support needs) autistic adults are scarce.  Unfortunately her page is only accessible for facebook users but you can try viewing her writings without logging in.

facebook page: https://www.facebook.com/AutisticSpeaks/

5. Chloe Rothschild-  Chloe is another autistic young woman who is around my age who provides useful and empowering information.  Like Lydia, her page and statuses are only visible through facebook.  However she also has a page on The Mighty that I will also provide a link.  I like that Rothschild found her village after aging out of school age services.  She believes that progress and growth is possible for autistic people even when they reach adulthood.  Like me, Chloe has sensory processing issues and believes in the use of fidgets and occupational therapy.  She also uses AAC to supplement her verbal speech which shows that assisted technology apps and devices can be an option for verbal individuals on the autism spectrum.

facebook page:https://www.facebook.com/chloerothschildasd/
 
The Mighty: https://themighty.com/author/chloe-rothschild/

6. Musings of an Aspie- This is another blog by Cynthia Kim who is an adult diagnosed autistic.  What I like about Cynthia's blog is that she writes about topics that I feel are not discussed enough in the greater autism community such as the myth of independence, age appropriate interests and special interests etc.  She takes a similar viewpoint as me with these topics.  For example, in her post to demonstrate why functioning labels for autism are not useful  by making two versions of herself (a high functioning/low functioning) and gave them two different names.    She also has a store called Stimtastic which sells fidgets for both children and adults with autism.

website: https://musingsofanaspie.com/
store:https://www.stimtastic.co/

7. Unstrange Mind-  Unstrange Mind is a blog runned by autistic activist by Sparrow Rose Jones.  Like the other pages I have listed here, she offers insights about the autistic mindset as well as promoting autism acceptance.   In particular, she talks about autistic burnout and how other comorbid conditions can affect the daily lives of autistics.

website; http://unstrangemind.com/about/

8. Zoey Giesberg- Zoey is a good friend of mine and is a down to earth person.  She writes eloquently about her own experience about being autistic as well as some of the topics that affect our community such as mental health issues, autism and media portrayals etc.   I like how she is very tactful in how she words her blog posts which unlike a lot of people who write about autism is hard is hard to find.

blog: http://jumpingoutofthefishbowl.blogspot.com/

 
Parent Runned Blogs

1. The Thinking Person's guide to Autism-  This is a useful page runned by a mother of an autistic boy.    This one of the few parent runned pages that is neurodiverse friendly and believes that autistic voices should be in the center on all discussions about the disorder.  They offer useful information on a variety of topics such as stimming, self injurious behavior/aggression, policies that affect autism and disabled people, inclusion, AAC use etc.  They also promote blog posts written by autistic people on their official facebook page.

website/blog: http://www.thinkingautismguide.com/
Facebook page: https://www.facebook.com/thinkingpersonsguidetoautism/

2. Diary of a Mom-  This is a another parent runned page by a mother of an autistic daughter.  I stumbled across this page based on a post she wrote about age appropriate interests.  I like that she parents her daughter by consulting with other autistic adults and believes in the power of consent when sharing info and photos of her own daughter. 

blog: https://adiaryofamom.com/
Facebook page: https://www.facebook.com/adiaryofamom/

This is my list of sources I feel aligned with my core values.  I liked how they had the delicate balance of trying to be helpful without alienating other autistic people and their families.  I know there are a lot of blogs written by autistic advocates that I have not listed because I only read one post and have not read enough of their posts to really get an idea what there about.    As stated in my disclaimer all the authors that are autistic self advocates are female so it is not completely objective given that your blogwriter is an also an autistic woman.  However, I feel that some of these sources will be helpful for autistic males as well.   I hope this list will be helpful for some of my readers.










Saturday, September 9, 2017

Why I became a Self Advocate for Autism

If you have been reading and following my blog posts, you might wonder what made me want to become active in the autism community.    The answer is that there are multiple reasons instead of one specific moment in my life.  I know there are many self advocates out there that are already doing a great job speaking out on behalf of those who haven't yet found  their voice and continue to expand our knowledge base on this complex condition.  I wanted to add my insights, experiences and thoughts to the autism community.  Autism is a very misunderstood condition and also heavily stigmatized in our society.  I feel that the more autistic voices that are out there speaking, the less likely we are pushed aside in the autism debate and that we are treated respectfully in society.

Perhaps the perfect place to start  explaining my interest in becoming active in the autism community is my own experience living with the disorder.    I was diagnosed in preschool but it was six years later when I was in fifth grade when I finally learned about what autism was.  I began to notice that my peers were changing in terms of developing more mature interests whilst I stayed the same.  As I entered middle school, the feeling of knowing I was different was excacerbated. The teenage years can be very complicated for anyone, but it was a magnified  experience for me.  I noticed that my peers in middle school were so interested in fitting in and being part of a large social group.  I found that to be very perplexing and did not understand why middle schoolers became so interested on the approval of others and the "coolness" factor.  My autism made me oblivious to the shallowness of middle school culture.

Like so many other people who first learn about autism, I decided to research what it was.  Unfortunately, in the early to mid 2000's there was a lot of negative information about autism as a set of deficits.  There were no active autistic-runned or neurodiverse organizations that were in existence back then.  A lot of information about the condition was written by neurotypical parents and professionals.  As a consequence of  these deficit based narratives about autism,  my self esteem and self  confidence took a steep dive.  I felt that everything about me (my habits, behaviors and interests) was flawed and needed to be fixed.   Although the people around me had the best of intentions of trying to help me, they sometimes did things that I perceived as "harmful."  A few examples of this was  the ABA agency that tried to extinguish my jumping in middle school,  to this article on Newsweek magazine in which my mom and I were featured that discusses intimate details of how I struggled to develop teen interests as well as being sent away to a summer a life skills bootcamp at my therapist's suggestion during the summer of my senior year of high school that felt like being placed under a microscope in terms of my abilities.   These experiences in my life as well as the medical model of autism that I grew up with  made me felt marginalized growing up.  I felt that I did not fit in anywhere nor fit in the tight categories or boxes" that society has made for the various labels that inhabit our identities.

When I entered adulthood,  the stigmatization of autism and my strong urge to become an advocate for autism was more evident due to the relative absence of autistic voices in this age group.  Again, this is tied to the fact that up until recently, the discussion on autism was dominated by people who have second hand accounts on the disorder.   As a result of a lack of adequate resources for autistic adults, I had to navigate the first few years out of high school on my own.  That was perhaps the hardest time of my life to navigate.  To this day,  I still find it hard to live in a society built for neurotypicals .  To make matters worse, there continues to be an erasure of adult autistics by others who continue to infantilize the disorder by referring to children when writing about the disorder.   My experience as a teenager as well as my current experience of  being a young adult with autism  has lit the flame of being interested in social justice for people with autism.

I became an autism advocate because I don't want any young person with autism to grow up with society telling them they are broken and to enter adulthood feeling insecure about their identity.     I suffered from low self confidence as a result of being aware of the destructive messages about my disability that I was exposed to growing up and to this day I am still working to overcome.    I am also sick and tired of the autism conversation to be dominated by people who actually don't live with the condition.  I am tired of all the negative stereotypes that plagues autistic people (we lack empathy/considerate of other people's feelings).     I wanted to add my voice to the growing number of autistic voices, because I feel there are a lot of topics about autism that are ignored or not given much attention in the wider community. I want the world to know that adults with autism do exist and that we deserve to have supports and accommodations too.  It is not only autistic adults that are virtually ignored, but also autistics who live with another marginalized identity( a person of color, female, and LGBT) who are pushed to the sidelines on the autism conversation.   I wanted to give voice to the voiceless or the underdogs in the autism community

This is why I wrote a autobiography about my experience, started a blog and present to groups about living with autism.    I wanted to give others (especially neurotypicals) a perspective of what it's like waking up everyday and having to face a world that was not built for you and that refuses to accommodate people with disabilities. I want to challenge existing paradigms about autism such as age appropriate interests and functioning labels.  Me and other autistic self advocates are showing the world that normal is "just a setting on a washing machine."






Image: Me with Agnes, Margo and Edith from Despicable Me taken on a trip to Universal Studios for my 25th Birthday.