Monday, March 5, 2018

Inter/Intra-Disability Oppression: When bigotry,ignorance and apathy comes from other Disabled People and others in the Disability community

Recently  on Facebook, I was sharing an opinion in regards to an article  that talks about how uber will offer rides for patients that need to get to medical appointments via an anonymous platform that caters to those with disabilities.  What I wrote in that comment was that as an autistic person who has social anxiety and afraid of strangers, I prefer to have someone that I personally know or someone who was vetted than entrusting 2 different drivers who are complete strangers (as well as untrained) for such an intimate task.  Two people (I assumed have medical issues since the platform that this article appeared on was disability related) left comments that came across as  showing indifference  to my experience .   I ended up deleting the comment since people were taking it the wrong way.   In hindsight, I realized later that the comment I wrote was probably inappropriate for the context and it was targeted to the wrong audience since the people reading this article are likely not autistic but had medical conditions that required frequent doctor visits.   However that being said,  there was nowhere in that comment did I mentioned that I was against people using this service, I just stated my preference and people automatically jumped to conclusions from that comment.  

This encounter was a learning experience for me but it was also an eye opener that lack of understanding of the autistic experience does not always come from able bodied neurotypicals.  It can come from individuals who have different conditions/disabilities as well.  The piercing part of this whole situation was that these individuals who likely have disabilities or challenges of their own, just didn't seem to "get it."    You would think people with other disabilities (or even the same condition) besides autism would be more empathetic than  people who have no challenges at all.  But apparently this is another layer of  callousness, ignorance and apathy that people like me have to deal with.  The difference is that neurotypical ignorance and apathy is typically called out.   I want to bring light to this issue since this kind of oppression is not frequently discussed. 
There are some experiences in my life where people who have different disabilities than myself, did not seem to get how autism impacts me.  For instance,  I have had a friend  who has a learning disability  to whom I tried to open up to her about the personal struggles of being autistic.  She came across as seeming uninterested.  My friend even talked about another person she knows who also has autism and epilepsy.  She didn't seem to fathom the idea why her "diagnoses" are so significant part of her identity.   My friend also didn't understand why her friend wanted to ban strobe lights (which can be a potential trigger for seizures and sensory overload for some people)  at places like Disneyland. She responded that taking away the strobe lights is "ruining the fun and taking away from the colorful experience."  That conversation was another "a-ha" moment for me,  because it revealed that even those with other conditions (e.g. learning disabilities and medical conditions) can dismiss and not grasp some of the key issues, challenges of living on the spectrum.

Another common thing I see both in particular on online communities and platforms is the need for some disabled individuals to emphasize their challenges or support needs are more important than the challenges and support needs of another person with a disability.  This is called Oppression Olympics.   According to Wikipedia, oppression olympics is a one upmanship between two marginalized groups to determine which of their identities is more oppressed in society.    For example, this phenomenon tends to occur in the autism/autistic community in which one individual with high support needs is compared to another autistic individual with lower support needs like myself.    Oftentimes this comes from parents but I did have a friend who was envious of "my ability to speak and be independent and go to college" or how "someone else's son or daughter needs more support than me" etc.    The comparing of support needs that occurs in the autism community, is what pisses me off the most.  It is dismissive of the fact that everyone with a disability, no matter how impaired they are, have challenges and feel  oppressed due to the ableist structure of  society.   Every person's disability story or narrative is valid and they deserve to have their concerns and challenges heard without the fear of being dismissed.   Oppression Olympics is the biggest reason there is still a great divide in the autism/autistic community as well in the greater disability community.

Even  some autistics can show bigotry and ableism towards those of their own diagnoses.  This tends to happen with some advocates who have the Aspergers diagnosis who view themselves as superior to those with the autism diagnosis.  They are called Aspie supremacists.  My ex-boyfriend who had Aspergers would fall under that category.  He was the stereotypical Aspie  who viewed autistics as having the mind of "toddlers."  He doesn't know that I, myself was diagnosed with autism because of my language delays  (in the old DSM IV, to qualify for an Aspergers diagnosis you must not have had a language delay in early childhood).  Another rebuttal to my ex's erroneous statement that being diagnosed autistic automatically  equals intellectual disability is that there are those who are nonverbal who type to communicate.  Some of them are fully included in general education classes with their typical peers and go on to college.  Aspie supremacists as well as some "high functioning" autistic advocates can reinforce ableism and its measures of success based on external achievements.

In sum of this post, I feel that we need to accept and call out acts of ableism, prejudice and apathy committed by other disabled individuals.  It is not true disability activism and leadership, when a self advocate only shows compassion and understanding to those who have the same experiences and support needs but shows apathy to those narratives that are different from theirs.    As a self advocate,  I try to understand another disabled person's experience and see where they are coming from even if their needs and concerns are different from my own.   The disability narratives that I come across as a result of meeting people across  the spectrum as well as those with different conditions , broadens my worldview of what disability means.  It  also shows how different everyone's needs are and that there is no "one size fits all way" to address these challenges.   Some disabled communities can become cohesive to the point that they end up being close minded to those experiences that are not like their own.  Others become self absorbed with their own challenges related to their disability or condition that they tend get bitter and think their challenges have more merit than another disabled person's challenges.  This is hypocritical and  counterproductive because we cannot simultaneously demand compassion and empathy from able -bodied neurotypicals but refuse to show it to people with different conditions (as well as those with the same diagnoses).  If we want the world to be more disability friendly and advocate for change, self advocates need to be able to listen and learn from each other.

Sunday, February 25, 2018

What the Parkland, Florida massacre reveals about our broken mental health system.

The recent shooting at a Parkland, Florida  high school which left 17 people dead, has sparked a lot of  outrage and debate about preventing these types of incidents.   Some call for stricter gun control and universal background checks while others suggest arming teachers and other school staff with guns.    Both the liberals and conservatives have strong opinions on the issue of school safety and gun control in an effort to prevent another tragic incident like what happened at Marjory Stoneman Douglas High school.  However as someone who lives on the autism spectrum,  I feel there is an important element that is missing from the discussion as well as media coverage in terms of reducing mass violence across the United States.  It  is about reforming our mental health system as well as our societal attitudes against people who have developmental disabilities and mental illnesses.   Before I go on writing in depth on why these factors are important, I want to make clear that I do agree we need more regulation on guns in this country.  I support universal background checks and believe that individuals who have a history of violent outbursts or who have suicidal tendencies should not be permitted to own a gun.    

There is no question that mental health care in America needs serious reform.    This is apparent in the number of  homeless people (most with serious mental illnesses) I see on the streets in places like Downtown Los Angeles or the Venice beach boardwalk.   Some end up in prisons and other places that are not equipped in addressing their mental health needs.   This is the result of  patients of being released from the hospital prematurely (due to overcrowding) with no action plan in place. After leaving the hospital, individuals with serious mental illnesses are left on their own wondering the streets if they have no family or other people around to support them.  The amount of homeless people with serious mental illnesses are the results of  deinstitutionalization from the community mental health act signed by president John F. Kennedy in 1963.     The intent of   this act was a good one since some of these institutions for those with mental illnesses were rife with abuse and neglect.  It focused on the need for community based mental health support.  The problem lies in the fact that we haven't followed through on establishing more community based mental and behavioral health  supports.  We also closed mental institutions too soon without gradually transitoning patients out  into the community. The consequence of closing down hospitals and lack of psychiatric beds, leaves many individuals with serious mental illnesses and their families without adequate resources.

Going back to the point I made in my last paragraph of  families having no resources when they are facing a crisis, we need to follow through with the Community Mental Health act in establishing more behavioral health centers that provides comprehensive supports to these individuals.  We also need to have a more comprehensive treatment and behavioral support plan when an individual is in crises. This one article mentions that states have been cutting hospital beds at an alarming rate.  This leaves the family with either few or no options for psychiatric care when their loved one is a threat to themselves or others. 

When the individual has a developmental disability along with mental health issues, finding adequate help becomes more complicated as some of the psychiatric facilities and other resources are not properly trained on developmental disabilities.    In this scholarly paper conducted by the University of Denver, there is disconnect between mental health system, developmental disability services as well as with primary care doctors.   In other words, research has highlighted the negative consquences such as law enforcement being called or being placed in a hospital in which staff are not adequately trained in dealing with developmental disabilities when there is disconnect between the different departments that cater to both developmental disabilities and mental health. Oftentimes,  individuals who are dually diagnosed are discharged from the hospital with no follow up services to prevent future crises or episodes.  I feel there needs to be a more proactive plan for individuals with developmental disabilities with co-occurring mental health issue when they are experiencing a mental health crisis as well as preventing future incidents from taking place.

Picking up on the point that we need to take a more proactive approach in our mental health system,  I heard of an approach via a John Oliver clip on youtube called  assertive community treatment.  This intensive approach does much more then just periodic visits with the psychiatrist that last 45 minutes to an hour.  It is an intensive individualized  approach in which services are delivered directly to the patient and provides assistance with everything from employment to finding housing etc.  It's structure is equivalent to supported living and supported employment models that are already available to individuals with developmental disabilities.   I feel like a service design that will do whatever it takes to keep the patient integrated in the community as much as possible will be more effective at preventing frequent hospitalizations of those with mental health challenges.

Then comes the confidentiality laws when an individual turns 18 and how parents and other family members feel powerless in helping their loved ones with either a mental illness or developmental condition.   Sometimes the laws that are meant to protect the privacy of an individual with mental illness and/or developmental disabilities can prevent important key people (parents, professionals etc.) and offices from intervening if problems arise.  There is a way around it in regards of signing a waiver that allows key people in the person's life to have access to personal information as well as being allowed to exchange information with offices or resources that cater to those with disabilities (doctors offices, counseling, college disability centers) ea about a particular individual.   I have firsthand experience of how these laws that are suppose to protect my privacy can at the same time be very burdensome and contribute to me feeling isolated.  When I turned 18 and moved onto college, the disability center were not allowed to communicate with my parents and other key people  because of those privacy laws.    Even the disability center were not allowed to communicate with my professors and other campus resources (e.g. the student psychological services) about my disability even though I am registered with their office.   The disconnect between various offices on the college level contributed to unnecessary heartache and also increased the sense of isolation I felt at college. These laws creates a sense of disconnectedness between different agencies and offices as well as people such as therapists and parents. Therefore, it can prevent them from effectively helping a person with a mental illness or other disabilities.  This the Catch-22 of many privacy laws that are meant to protect the dignity of those with disabilities and mental health challenges.   There has to be a better system of communication between different individuals and agencies for those adults who are not under a conservatorship.  I feel like these privacy laws don't take into account the importance of a team approach by making sure that anyone who helps a client or individual with disabilities is on the same page. 

Lastly, we need to change our societal attitudes of how we deal with those with disabilities and mental health conditions . This is the first part that needs to happen if we want to come up with effective supports for those who mentally ill or have disabilites.  There still seems to be a negative view of people with disabilities as burdens or that they are "crazy" and "violent."  This is evident in the media depictions on linking violence with mental illness and other conditions.  This leads to stigmatization and alienation of those who are not able-bodied and have brains with different wiring.   This is why mentally ill  patients are  discarded on the streets because society does not see value in them and wants nothing to do with them.  Americans think that it is the fault of the person with the disability for all the challenges they encounter in life.   As someone with autism, it is hard living in a society that is rife with ableism (both explicitly and implicitly) and continuously refuses to provide accommodations and supports because it is too inconvenient and burdensome for able bodied people.  To live everyday in which you are constantly reminded how much of a "burden" you are can sometimes can be too much to bear for some people. We need to stop marginalizing those with disabilities and start valuing them as human beings with feelings and contributions.   Instead, society should have the mindset of how we can lessen the stress that people with various physical, mental and developmental conditions face in their daily lives.

In conclusion,  I feel that the solution in reducing the number of incidents of mass violence ad shootings is more than having more effective gun control laws.   We need to reform our mental health care and how we deal with those with disabilities and mental health. This involves having deep and uncomfortable conversations about how we are going to fund or reform mental health care systems as well as other disability systems.  It should not be a solution of band aid fixes like how we solve other large scale problems in our country.  It should well thought out and should involve the insights of those who utilize such services. As I said in the beginning of this post, I believe in tighter regulations of owning weapons.  However, the solution to preventing mass violence in this country is multi-fold instead of just one universal solution.

Saturday, February 17, 2018

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.

Sunday, January 28, 2018

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.

Sunday, January 7, 2018

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. 

Monday, December 4, 2017

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. 

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.