Why I am take a Moderate stance to Inclusion

Nowadays in the disability community, the word "inclusion" pops up in a lot of conversations.  It is a mantra for parents, professionals and self advocates alike.  As someone with a disability that was fully integrated with nondisabled and neurotypical people, I believe in the importance of inclusion and how it is beneficial for both disabled and nondisabled persons alike.     Recently I read an article that was shared on facebook that changed my perspective on inclusion.  This article, made me take a hard look at my views and examine some of my life experiences in which the positions posed by pro-inclusion activists conflict with some of my own as an autistic self advocate.  It is with this post, I will share why I take a more moderate stance in the inclusion debate.

There are some scenarios in which inclusion simply does not work or falls short in serving those with special needs. Sometimes inclusion is a "false reality" and that it paints a picture that everyone with a disability will be welcomed and fully embraced in the community.  The reality is that not all communities are created equal in which some are more embracing of  "differences" than others. One such example is in the school system. Advocates who support full integration of those with disabilities into regular education classes miss the fact that not all school districts are created equal in provisioning of special education services.  This is true especially in big areas such as Los Angeles which is comprised of multiple school districts all varying in quality.  I was lucky that the school district was able to provide support services (such as a 1:1 aide, counseling etc.) that made inclusion  possible.  However for some of my friends, being pulled out of public school and going to a more specialized school was the best thing for them.

Another personal experience that supports why public school may not always be the best thing for special needs student was my work as a behavioral aide.  The students we take in couldn't handle public school  because of various behavioral issues and need a more intensive environment than a traditional public school environment.  In the particular program I worked in (it was a relationship based program for students on the autism spectrum), there was more 1:1 attention and the schedule was more flexible which allowed us to cater to the individual needs of the student than a traditional public school environment.   I saw the students progress and respond well to the more individualized approach of the school.  The benefit of nonpublic schools is that since they don't have to cater to the needs of neurotypical students enables students with disabilities to get their social, academic and emotional needs met.

Another example in which integration can sometimes not work for people is in the workplace.  The idea is that people with disabilities should work alongside nondisabled people.  While I am against sheltered workshops and the exploitation they provide for those with developmental disabilites, mainstream work environments sometimes aren't the most welcoming or embracing either.  While I was lucky to find a work environment that was supportive and embracing, I have heard of people having bad experiences whether if it was with their bosses, co-workers etc.   For those who didn't have success in a traditional work environment would benefit from an out of the box approach.  This is why I like the idea of a micro business that only employs workers with developmental disabilites.    For instance, Extroardinary Ventures a nonprofit based in North Carolina provides vocational opportunities in which those with developmental disabilities can sample different jobs and see which ones would suit their individual needs.   With this type of model, accommodations are ensured and job coaches are there every step of the way to make sure it is successful.

A second counterargument in which some pro-inclusion activists seem to overlook is that some people with disabilities don't enjoy or  want the same life experiences that people without disabilities typically enjoy.  An article written in Psychology Today by a mother of an autistic young man   argues how sometimes kids with "severe" disabilities (as well as some with mild to moderate impairments)  may want to only have relationships with support staff instead of traditional unpaid friendships that most people take for granted and how inclusion advocates shouldn't dismiss these types of relationships as inferior.  In that same article, she also argues that kids with autism sometimes don't enjoy the same events such as birthday parties and community barbecues that are reveled by neurotypicals.

As someone who spends most of the time fully integrated with nondisabled peers, I understand some of the frustrations that are voiced in the article.  I've had experiences with both unpaid friends and support staff.    The relationships I've felt the closest to were with the people who were paid to be with me (from therapists, school aides and companions).  I felt that they were in tune to my needs and understood my disability.  They knew and supported my interests in Hello Kitty, Disney Princess, Frozen etc. and never looked down on me for having unconventional interests.  It is very hard for me to find unpaid friends my age who share my interests in things like Peppa Pig  and other "childlike" cartoons since it is not a common occurrence  among people in their 20's.    With support staff such as companions, the nature of the relationship and the financial compensation makes them enter "my world" and I don't have to worry of the complexities that are typically common with traditional friends.  I also don't enjoy the same experiences like going to noisy nightclubs and getting "wasted" that most of my peers in their 20's seem to enjoy.  These examples and scenarios that I just discussed show how the ideals of inclusion are not always in line with the desires of some individuals with developmental disabilities.

My last argument on how integration can sometimes be inappropriate is that sometimes people may only want to hang out with others who share their disabilities.  When you are with others who share your struggles, you realize you are not alone and you know right away that you will be embraced and accepted.   For example, I take an art and a recreation class in which all the people taking the class are adults with a developmental disabilties.  What I like about these classes  is that I feel that I can be 100 percent myself knowing that the instructors will be accommodating to my needs.  I can freely jump and down and bring my fidget (I carry a sea urchin like squishy toy) knowing that no one will judge me for all my "quirks".   However in some states, you cannot use service hours to fund activities (like the classes I currently take) that are exclusive to only those with developmental  disabilities just because they are not technically "integrated."  It misses the fact that some people had bad experiences with taking integrated activities in which they were bullied, ostracized or simply not welcomed.   We all need our "safe spaces" and sometimes taking separate activities with others who share our struggles is preferable at times.

In summary of this blog post,  the positions and solutions that are posed by radical inclusion advocates are not always appropriate depending on the situation.   I would like to  also emphasize the "moderate" part of my argument.  Some advocates reading this post might criticize me by saying that I believe in segregation of those with disabilities or that I support institutions, group homes farmsteads and other programs that marginalizes those with disabilities.  Firstly, I want to emphasize that I don't believe in programs or models that belittles or emphasizes the inferiority status of people like myself.   Secondly , I believe that it is important for people with disabilities to have experience interacting with nondisabled people since it benefits both parties.  Inclusion helps break down some of the preconceptions that society holds against those with disabilities.  That being said, inclusion is not a "black and white" issue as it so often is portrayed.  It has some potential downsides as well.  Advocates miss the fact that not all people with disabilities have the same ideas of inclusion and it is important acknowledge this variation of attitudes.  We need to take a more balanced approach when it comes to inclusion and realize that inclusion is not the same as self determination.  It is the latter that we need to emphasize when supporting those with developmental disabilities.

My move to Washington State and the transition process

In June, I made the decision to make the big move from the hustle and bustle lifestyle of Los Angeles to the more peaceful countryside and small town life of Sequim, Washington.  It was a hard decision to leave behind my job as a behavioral aide at a special needs school, my advocacy work in California as well as some of my friends and amazing mentor behind.  My parents bought a house in Washington back in 2016 so they can retire.  However, the people they bought the house from needed to rent it back from my parents for a year and a half.   They moved in March, but I had to stay behind in L.A. with my grandma because of my job.  I wanted to wait until the school year finishes to move with my parents.
 As you probably can imagine, this came as a shock to me and I was filled with anxiety and ambivalence about this whole transition. Change doesn't come easy for me (since a lot of autistic people have a hard time dealing with change). This is because there are multiple layers to this move.  The first layer was because we were moving to a small rural and remote town of Washington state.   One thing about moving to a big city is the convenience factor in having a lot of options (in terms of stores as well as transportation).   Moving to the countryside where everything is out of reach is probably the toughest part of this transition.   I am still in a state of culture shock with all these changes.
Another concern that I have with living in a small town is the limited resources for those with disabilities and autism.    More specifically, I was afraid that I wouldn't find a qualified young person who can be a companion/support person to me because the town in which I live in is composed mainly of retired people.   At first, it didn't look promising since my mom reached out to various people and they couldn't come up with anything that was of help to me.   It wasn't until we reached out to this one nonprofit  that serves adults with developmental disabilities.  Luckily, the executive director found someone who was a good match and has the right experience and qualifications ( she takes clients out into the community as part of her job).   I was surprised how fast I was able to find someone because usually I have to interview and try different people out until I get the right fit.
Another difficult aspect of this transition is that we are becoming an intergenerational household (just like other asian families) with my grandma moving in with us.  Although she is a loving lady with good intentions, she can be overbearing and has a lot of nervous energy which can be difficult to deal with sometimes.  Her English is also not the greatest and speaks Japanese to me which creates a language barrier. I am still trying to figure out how to balance this dynamic with my grandma without it damaging our relationship.  I think that if we have spend some time apart, it can make this living arrangement a lot more easier for me.  Luckily we lived together in L.A. for three months before the two of us joined my parents in Sequim.

I am still trying to deal with my yo-yo of emotions of trying to embrace this move but also missing California.  Surprisingly, I am dealing with this transition exceptionally well.  I thought I was going to cry every single day.  It helps that the people are very helpful and understanding.    The road ahead is not going to be easy and I still miss California very much.  At the same time, I wanted a fresh start as I had a lot of self destructive scripts that I had adopted from living in L.A. and wanted a break from the fast-paced and competitive nature of Los Angeles.  Then comes the most daunting part that I is looking for a job in a small town that is mostly composed of people who are retired  .  Because of this,  I'm not sure if I will live in Sequim forever or long term. However,  I get to enjoy living in a big house (since I lived in Condominiums all my life) and want to try out small town living.  As my mom said, "life is a journey."

On autistic burnout and regression

If you have met and come across the writings and blogs of different autistic self advocates, chances are you are familiar with autistic burnout and passing.  I've never fully heard of the term until I became more active in the autistic community and started reading the writings of other self advocates like myself.  In fact as this article states, the concept of autistic burnout is rarely discussed among nonautistic professionals and parents.
Another phenomenon that can co-occur with burnout is "autistic regression." Unlike burnout, regression is widely known among nonautistic parents and professionals.  When an adult or child reverts to an earlier stage of development, parents and professional freak out  because they fear that their child or client is losing skills and won't ever gain it back.  They don't understand that what they see as "regression" is part of the "peaks" and "valleys" that characterize life.  Regression is a term that  is wrongly applied in certain situations and is a pathological term to describes the "lows" that autistic people go through.
I never knew that some of the challenges or limitations that I experienced throughout my adolescence as well as my young adult years could be the result of autistic burnout.  Until I knew these terms, I thought what I was going through was due to laziness or that I "was creating this in my head."  It wasn't until I started following various autism related pages on facebook and starting a twitter page that a lot of my fellow autistic peers were going through similar experiences.  There are days where the expectations of everyday life were just too much for me. Camouflaging myself just to get by in a society that was not built for me zaps my energy to the point that it barely leaves enough energy to do other things (e.g socializing, cleaning the house).    Whenever there is a layer upon layer of difficult situations (e.g. tests, exams) that demand a lot of coping skills, I can get easily irritated which can also lead me to get upset or it can lead to what we label as having a meltdown.   Sometimes, this can lead me to "lash out" aggressively without meaning to.  This is when self management just fails me and no behavioral therapy can entirely eliminate meltdowns due to burnout.
Transitions can also excacerbate burnout and can precede "regression."   I've  experienced this with the numerous transitions I have went through during my young life.  However, I've felt the effects of regression the hardest when I left the structured nature of special education services in high school and transitioned to college. Since I had a lot of unstructured time, my anxiety was at an all time high and I felt depressed since I missed the high school so much.  For awhile, I felt sad and isolated and did not want to socialize that much.  In my third year of college,  I was experiencing a high level of anxiety about my upcoming transition to a four year university/dorm living.   In dealing with this transition,  I rediscovered my interests in Hello Kitty, Disney Princess and other kitschy characters that are related to childhood innocence.  This may look like regression  because I am reverting back to a childlike state or "old childhood interests.  In reality,  this is how I cope with change because it is the one thing I can hang on to.
If you or your loved one is experiencing burnout or having regression due to transitions, it is important to not freak out.  Instead try to be supportive of an autistic adult or child experiencing burnout and come up with an action plan together in trying reduce the amount of negative stress and anxiety burnout brings.  As for regression, a lot of times (especially true for teens and adults) it is related to something that is going on in the autistic person's life (e.g. moving to a new place).  Please understand that just like other humans, autistic people go through "dark periods" as well and it does not mean they have lost skills and will never gain it back.  If you or your loved one is in the midst of regression, just let it run its natural course and have the confidence that it will all work well in the end.  Regression is not necessarily a bad thing and we need to stop attaching negative stigma to it.
We need to bring more awareness and recognition of the signs of autistic burnout in the mental health fields so professionals can effectively help the autistic population.

Why IQ scores are erroneous for autistic people

When it comes to measuring the capabilities and challenges of autistic children and adults, IQ is one of the main measures that is employed.  However, there are some reasons why traditional IQ tests are not the most accurate ways in understanding the full scope of individuals on the spectrum.  For label-obsessed neurotypicals, these tests can provide explanation in a simplistic matter in understanding the capabilities and challenges for those on the spectrum.  However for the autistic community, these tests can be a disservice especially when it comes to educational placement and provision of services. It is with this post, I will discuss some of the flaws or shortcomings of traditional IQ tests.

One of the reasons, why IQ tests are flawed is that it can underestimate or overestimate the abilities and challenges that autistic people actually have.  In fact, IQ is the biggest determinant when considering if a person is "high functioning" or "low functioning." There are two scenarios in which this can occur.  For people whose autism is not as apparent and have the privilege of passing,  our high scores on intelligence tests can prevent us from getting the support we need.  There is this erroneous and outdated assumption that if an autistic person has high intelligence then they can navigate  neurotypical society with little to no support.   In fact, some states will deny support services to those who score above 70 on IQ tests.  However as this article states,  intelligence tests don't account  the executive functioning challenges that autistic people without intellectual disabilities face in their day-to-day lives.  For instance a person who tests in the "average to above-average" range on IQ tests may have difficulty to do important tasks of daily living such as grocery shopping, budgeting, personal hygiene etc.
 I am one of those on the spectrum that would score high on traditional intelligence tests, but I still find some crucial activities of daily living such as cooking, making doctor's appointments, transportation etc.  very challenging and still require support to navigate some of these tasks.  My so-called "high IQ" masks some of the social challenges (e.g. social anxiety) I still face as an adult on the spectrum.  Eventually when I plan to live on my own, I will require support to effectively manage the transition of living away from parents as well as managing activities of daily living.  However, I am afraid that my "high IQ score" would serve as a barrier for people to recognize my support needs.

For the other scenario,  having a "low IQ" can make people underestimate the abilities of some autistic people especially for those who have limited to no speech.   Autistic individuals without any reliable spoken language tend to score low on traditional intelligence tests which makes the people around them doubt that they have any capabilities.  For instance, their parents would have been told by many doctors and experts that they would more likely end up in an "institution" and less likely to be mainstreamed and pursue postsecondary education.  They would also more likely  be relegated to segregated classroom settings.  However there is a growing group of nonspeaking autistics that have shown that "being nonverbal does not mean not thinking."    In fact, some went on to pursue postsecondary education as illustrated in the lifestories  of DJ Savarese and Sue Rubin.  These examples show how faulty the results of traditional IQ tests can be for those who are more affected by autism.   Consequently, it can lead people to mistakenly believe that they are "intellectually disabled."

Another big reason why intelligence tests are inaccurate measures, is that autistic people usually don't test well.  These tests require a person to sit in a room for a long period of time and have questions that contain a lot of verbal information.  The testing environment may also trigger sensory  issues in some autistic individuals.  Some also don't have the attention span and cooperation to do the tasks the test examiner wants them to complete .  When I first got diagnosed, I took a verbal IQ test in which I did terribly on due to my limited language capacities.  The examiner who was a young graduate student mistakenly thought that I had an intellectual disability based of my test results.  When my mother talked with the head psychologist, she said I was given the wrong test.  This shows how the structure of the tests themselves can not accurately predict the true intelligence levels of autistic people.

Lastly,  people on the autistic spectrum demonstrate their intelligence in different ways than what is reflected on traditional IQ tests like the Wechslers or Stanford-Binet scale.  For instance, this article talks about how these IQ tests set autistic people up to fail by overlooking their hidden talents by emphasizing their disability. For instance, two boys that I work with (I am a paraprofessional at a special needs school) demonstrate the discrepancy between IQ score and actual intelligence. One has a short attention span and gets easily overwhelmed with a lot of verbal information which would make testing his IQ very hard.  However he has knows roman numerals, can write the alphabet backwards and can script in different foreign languages. The other boy also has a hard time with paying attention and would have a hard time completing the tasks and following the verbal instructions that characterize most IQ tests.  However,  he is really good at computers (he has his own youtube channel), knows the different models of trains and cars and memorizes license plate numbers and phone numbers.  These boys would not test well when given traditional intelligence tests, but it is evident that they have hidden talents that are not easily seen.

These are some of the ways how intelligence tests can fall short of describing the actual abilities and challenges that autistic people have.  Autistic people often have "spiky profiles" meaning that they will have strengths in some areas while they struggle in other areas.  We need to stop conflating autism with intellectual disability.  This means state supports (especially the adult service system) need to cater more to the needs of autistic individuals.  Therefore, eligibility criteria  to qualify for such services needs to changed to reflect the unique and ever changing needs of those on the spectrum.  Other methods need to be explored in terms of measuring the actual intelligence of an individual with autism besides relying on the Wechsler scale.  We need to look at the whole person on the spectrum and then determine the appropriate supports rather than just making assumptions based on a single IQ score.

The Medical vs. Social Model of autism and disability

This topic has been on my mind for awhile but other topics seem to take precedence when writing blogs.   It is the medical vs. social model when discussing disability.  In case you are not familiar with these concepts, there seems to be two different views when talking about disability.  The medical model looks at disability as a problem that needs to be fixed.  This school of thought breaks down the characteristics of different disabilities as a set of symptoms and focuses on treatments and cures.  On the other hand, the social model looks at disability as an important identity to a person and how different social forces can create either support or create barriers that affect the lives of these individuals.

A perfect example of the social and medical models at play is with autism.  For a long time, the dialogue of autism has been focused on the medical model of deficits, cures and symptoms.  Some examples of the medical model of autism include behavioral interventions that try to make autistic children "indistinguishable from peers," the use of  functioning labels,  big autism organizations that are runned by neurotypicals that funds research into the causes of autism with the hopes of preventing the condition.  The product of  all this medical rhetoric is negative stereotypes made about autistic people.  An example of a commonly held stereotype is that "autistic people lack empathy" or that we are "socially awkward and immature."    As a result, the medical model has led society to view autistic people as "less than human" and are not deserving of the same rights as humans without disabilities.  I believe this thinking has played a big role in the continued exclusion of the voices and experiences of adults on the spectrum.

Self advocates like myself had enough of the dialogue being focused on cure and deficits.  We asked for a more social model of disability to take place of the prevailing medical model.  This is what we call neurodiversity.  Neurodiversity states that people with different neurological conditions such as autism, Dyslexia, ADHD etc. are wired differently and that these different neurostyles need to be accommodated as well as accepted.  Critics accuse the neurodiversity movement of downplaying the challenges of autism and glorifying its strengths.    Most neurodiversity advocates (myself included) acknowledge the challenges and still see autism as a disability.  The main point of the movement is to remove the negative stigma of autism and that disability is not something to be feared or gets in the way of happiness.  Proponents of the neurodiversity movement believe that ignorance and negative societal attitudes get in the way of happiness in those who live with autism and other disabilities.   We demand the same human rights and civil liberties that are granted to nondisabled people.

 The social model of looking at autism is slowly taking force.   Some examples is the is the call for the inclusion of self advocates in setting the course of autism research; the relationship between acceptance of autism and mental health issues that commonly occur in autistic people is being finally explored; as well as the push for self determination and person centered planning in adults with developmental disabilities.  There are more autistic self advocates that are sharing their experiences than there was 10-15 years ago.  I believe if we embraced a new social paradigm of addressing the social barriers that autistic people (as well as others with other conditions) face,  the quality of life and outcomes of these individuals would be greater. 

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.

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.

Movie Review of "Please Stand By"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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