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 

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.

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.