Sunday, June 11, 2017

A letter to my younger teenage self

Dear younger self,

I know you are feeling insecure, frustrated and broken about being an autistic teenager living in a neurotypical world.  I know that learning about your autism diagnosis wasn't easy for you to accept.  It didn't help that when you were going through your formative years, the world hadn't embraced neurodiversity yet.  Instead, the medical model of disability prevailed as pro-cure organizations portrayed autism as a "tragedy."  Professionals weren't as helpful either as they often  contributed to the negative stereotype of autism by writing deficit based narratives about the condition.  They talked about how how  autistic people "lacked empathy" or were "socially naive."  Unfortunately, this was the only information that was available to my parents and others who worked with me since there weren't too many first hand accounts about autism or vocal self advocates at the time.  This had the unfortunate consequence of  having your needs and intentions misunderstood as parents and support people used approaches that contributed to your insecurity.  

In school, support staff discouraged you from socializing with adults (such as the computer teacher in middle shool) and pushed you to socialize with more typical peers.  They didn't understand how intense your social anxiety was or that you had no interest in being friends with your school peers.  You were strongly encouraged to give up your interests of Hello Kitty and Disney Princess in exchange for more teenage interests like fashion to get you to "fit in better."  You were forced to join clubs during lunch because the school staff thought it was good for you to branch out and meet people when they had no idea about the sensory overload you felt when you were in a huge social group.    As a result of your parents and others measuring you against neurotypical peers, you felt inferior to them.  You thought there was only one way to live a normal life and that is to become neurotypical.    You always second-guessed yourself and constantly kept asking others for reassurance.  As much as it annoyed the people around you. this behavior was a way to cope with your insecurity and  the inconsistent identity of appearing "normal" but feeling so different inside.  You were unsure about where you stand and what the future will hold for you.

Now as a young adult looking back and have accomplished some neurotypical milestones (graduating college and getting my first job), I can say that  "there is no such thing as normal" and the notions of milestones and deadlines are a myth.  Achieving the neurotypical lifestyle is not all what it's cracked up to be.  It can lead to more stress and expectations that can burden your already overactive sensory system.    I am also here to tell you that when you become an adult, you have more freedom and choice in how you want to live your life.  The concept of "age appropriate" is overrated and that your interest in Hello Kitty and Disney and all the other related things you like now are becoming more mainstream.    There are other autistic young adults who went through hardships and are tired of parents and professionals dominating the autism debate.  As a result of more autistics speaking out about their experiences, there is a growing movement of "autism acceptance".   The experiences that you are going through in adolescence has made me the strong self advocate I am today.

Looking back, I know it is hard  to accept that you are going to be autistic for the rest of your life. While there are interventions and therapies that might help you cope better with your symptoms, they won't take away the autism from within you.  The best advice I will share with you is to try to accept autism as part of your identity.  Accept the fact that autism might make it hard to do certain things that most typical people your age take for granted (e.g. driving, making friends, traveling).  I also want to let you know that
 it is okay to have limitations due to your disability.  You should not be ashamed of asking for the supports and accommodations you need to deal with your limitations.  But most importantly, you are a human being and have the same basic needs and rights as someone who is neurotypical or nondisabled.  Autism does not make you any less of a human.  You were born for a reason: to make a difference in this world and to educate others about your condition.


Your 25 year old future self

Image: Christine, age 13 (2005)

Saturday, May 27, 2017

My college experience

    Recently I presented at a transition fair this past week about my journey through college and beyond.  After that experience, I thought I should write a more detailed post about my college years and the challenges that I encountered as well as some of the skills that I learned throughout the process.  It is with this post, I am going to discuss both of my experiences through community college and University.

After graduating high school, I decided the community college route because my family felt that going to a four year college right out of high school would be too overwhelming for me emotionally.  Community college allowed me the flexibility to mature and get college credit without having to deal with the stress of dorm life and independent living.

Needless to say, my transition to community college was not easy.  This has to do with the dramatic differences in support  between high school and college.  In high school, I had a strong support system of adults who cared about my wellbeing and provided emotional support.  This was all thanks to the legal document of an IEP which guaranteed individualized support services  for me and other students with disabilities. However once I got my diploma, I exited special education services and no longer was guaranteed protections under the IDEA.    In community college, there is an  office that provides accommodations to students with disabilities but they only provided basic academic accommodations such as extended time on tests, notetakers etc.  In my particular case, I did not need all those academic accommodations since academics wasn't the problem for me.  I needed more emotional support since I was having issues adjusting to community college.  It would have been nice if I had 1:1 support at college to help me navigate the various offices and bureaucracies of college life and talking with professors etc.  However, such a support system did not exist since postsecondary institutions are not obligated to provide accommodations such as 1:1 aides.    As a result, I felt isolated, anxious and a little depressed during my time at community college.    Throughout my first and second year of college, I missed my high school support people (especially my aide in high school)  that I would visit them constantly.

Perhaps, the most trying time in which I really needed the support was my second year of college.  My mom took on a  demanding full time  position as a pharmacy tech at a hospital which took a lot of her energy and time.  As a result of having two working parents, I was often left alone and was a "latchkey kid."  During that time I felt like I had no one to talk to  about the plethora of emotions of what I was going through with the exception of my behavioral therapist.  Even with that, I felt that no one truly understood the emotional pain I was going through and as a result my anxiety heightened.  Even though at the time the anxiety I experienced was unpleasant,  I realized that I had a lot of resilience and skills that helped me persevere through these hardships.  I realized that I was stronger than I thought I was and did not let my social isolation prevent me from doing well in my classes.   The fact that I was a strong student was what kept me going to pursue my A.A. degree in 2013.  As for the social and emotional difficulties I faced, my mom and I came up with a plan by hiring a companion/mentor who would take me out for social and recreational activities once a week.  My experience in community college has made me realize my strengths and my potential as well as needing to be creative in finding supports that meet my unique needs when resources are scarce.

In 2013, I transferred to a four year university and decided to make the big move to living in a dorm independently.  I was of course nervous about the transition since I never lived on my own in 21 years and did not know how I was going to do with adjusting to a new school and higher expectations  combined with the stress of independent living and making sure my basic needs were met.  My transition to the university went easier than I expected.  I quickly learned my way around campus and was able to navigate the various offices and bureaucratic systems.

However, I still faced a lot of emotional challenges my first year.  It was not so much the academics but the stress of living away from parents and navigating the college social scene.  At my college, people already formed their social groups from freshman year while I came in as a junior transfer student. Since I attended a very expensive private religious affiliated institution,  the demographic of the students tended to lean towards white and upper middle class.  The homogenous composition of the college made it very hard to find other students that I could identify with.  Another barrier in establishing potential friendships at college is the strong emphasis on Greek life and other exclusive groups in which you have to pay membership dues.  Most club meetings were also held at an inconvenient time for me (most of the meetings were held at 10 o'clock at night when classes finished).  As a result I felt isolated at school and felt that I did not belong anywhere.  The combined anxiety from keeping up with coursework and struggling to find a social network contributed to me going on a downward spiral in terms of my thoughts.  For the first time I actually felt the need to cut myself to deal with the intense emotions I was going through my first semester.  I felt ashamed of  revealing  to my parents and others about my dark thoughts because I was worried  that they would take it the wrong way. However I was able to overcome these feelings thanks to weekly counseling sessions through the student psychological services provided through my college.  I found these sessions to be helpful and I also had a really good therapist at the counseling center who genuinely wanted to listen to my concerns as an autistic college student.

Luckily, I found a faculty mentor who happened to be  related to a family friend through church.  He took me under his wing and helped me navigate the numerous bureaucracies as well as being an informal academic advisor and an extra listening ear.  He is an Asian American studies professor who has a background in anthropology as well as being both Asian and African American.  His experience and challenges of growing up in a biracial household made him sympathetic to my struggles being an autistic college student .    I would go to his office hours and I would chat with him about what was going on in my life.  Having a sympathetic faculty member that I can turn to at school has helped with the adjustment process and ease the daily anxiety that I went through.

However despite all the challenges, the self doubts, and constant thoughts of wanting to drop out, I managed to get my Bachelors degree in psychology in December 2015.  Not only that, I managed to graduate with honors.  When I received my college degree, I felt that all the hard work and stress paid off since (as my parents have told me several times)  getting a Bachelors degree will open more doors for me.  It is also an accomplishment since many autistic people don't ever attempt or complete college.
 That being said, my experience both at the community college and university levels show that there is a lot of work that needs to be done in making college accessible for autistic students.  There needs to be supports and accommodations available that go beyond helping students in academics.   For instance, a club or support group for autistic college students would have been helpful in meeting other students like myself.  Another useful support I wish was available to me at my college, is having an older student mentor (like a graduate student majoring in social work and or special education) helping with the adjustment to college life.    I know there are some colleges and Universities out there that provide these kinds of supports and accommodations that I just mentioned, but they are far and few in between. There are also some adult service agencies that provide additional supports  at college.  Despite some of these of these options the most important thing is that supports need to be tailored around each individual's needs and wants since no two college students with autism  are the same.   With the right supports as well as positive encouragement from family, professors and others,  college can be a viable option for people on the autism spectrum. 

Sunday, April 30, 2017

Why I dislike Jill Escher's "Autism Matrix" as an autistic self advocate

Last week, I was emailed a link to  this article written by San Francisco Autism Society President Jill Escher and was asked my opinion about it.  Basically, Escher created a matrix to classify the different types of "autisms" and touted it as "a new way of understanding the autism spectrum."  She assembled this matrix  using three tiers: mild, moderate and severe. In conjunction, she used intellectual ability and social-adaptive functioning  as her measurements.  Secondly, she took photos of actual autistic people and arbitrarily categorized them based on where she felt they scored on all these measures.   To the average reader, it may look like new information on how to classify and diagnose the complex spectrum of autism. In reality, it reinforces old school stereotypes and the inaccurate view of  "what you see is what you get" . I hate to write negative blog posts that puts people on the spot but I feel that as someone who lives with autism and is adamantly against functioning labels, I feel that I have a duty to speak out on why this is harmful since it goes against autism acceptance and the neurodiversity paradigm.

As an autistic self advocate,  I am outraged with Escher's publication of her autism matrix on so many levels.   First, she is making assumptions of the support needs and accomplishments of individuals on the spectrum based on external characteristics.   If Escher were to place me on her autism matrix, she would very likely  place me at the very top on her matrix (A1, tier 1)  closer to the "borderline group" with people like Temple Grandin and John Elder Robison since I can hold normal conversations with people about any topic, have normal speech and graduated college with honors and can hold a full time job.  What she doesn't see is that, I have ongoing anxiety that can be difficult to manage at times, mild to moderate sensory challenges that makes functioning in social groups challenging.  I don't drive and have poor independent living skills that might make living on my own challenging.   However a lot of people don't see those struggles when they meet me because I am able to hide it. It is only when you hang around with me long enough that you began to see my struggles and differences.  As someone mildly impacted with autism  it is hard to find and convince the "powers that be" of my support needs since there seems to be resources allocated towards those who are externally more impacted than me and haven't achieved the outcomes that I had. Escher doesn't understand that less impacted autistic people have support needs too and the struggle to get the support because of this very assumption  she attempts to reinforce.    However, me and other low-support autistic people are simply dismissed in her article as having "no support needs at all." This is apparent in her comment regarding an autistic woman who drives but has trouble keeping a job and struggles with anxiety.  Despite this woman being openly honest about her challenges and struggles,  Escher assumes that she has minimal support needs based on how she presented herself at the hockey game.

On the flip side, she also makes assumptions of nonverbal autistic individuals who have "intense support needs" as having cognitive challenges and "lacking any academic achievement."  Escher is making a false association that having no verbal speech automatically means low intelligence or cognitive ability.  In fact there are several notable examples of nonverbal people with autism such as Carly Fleischmann and Sue Rubin who have found their voice by learning to type.  Such individuals have shown through typing that they know a lot more than people assume them to know and that they are often trapped in uncooperative bodies.  Again,  Escher dismisses such typers as "outliers" as is apparent of her separation of Tito Mukhopodadhyay on her matrix.  To her, they don't fit her rigid categories on autism.  In reality there can be thousands of people like Sue, Carly and Tito who are smart but are trapped in their bodies thanks to conditions like apraxia.  To sum my first point up, I feel that Escher is trying to create a divide between assumed "low support" autistic people like myself to "high support" autistic people like her own children which leads me to my second argument.

My second reason why I dislike the "autism matrix" blog post is that it creates a "us vs. them" mentality  in the autism community between highly verbal individuals with autism who can easily pass in society and highly impacted individuals.  She thinks people like myself have nothing in common with nonverbal autistic people and that we can never work together in unity.  In  her view,  we are hogging the spotlight in the autism debate and taking all the resources from families of high need individuals like her own children.  She feels that "high functioning" individuals will never understand the struggles of  families whose children who are more impacted by the disorder.  This division is one that I despise because it doesn't get us anywhere and doesn't address the big picture issues surrounding our community such as the overarching lack of services for adults, prejudice and discrimination in society etc.   When we spend so much time comparing and contrasting and discounting autism narratives that don't match our own, we don't accomplish much.  We accomplish more when we act in unity.  It is parents like Escher who attempt to disrupt this unity by emphasizing that the needs of her kids (or those children and adults like them) are much more important  than the needs of the so-called "high functioning" individuals.  I am not saying Escher isn't entitled to her views and opinions about autism.  I get that parenting any individual on the spectrum brings its own unique challenges .  However, the part that me and so many others take issue with  is that she attempts to frames her views on autism from a parent perspective as fact and dismiss the experiences that don't match her own.  Part of unity is  having compassion for autistics who are not like yourself or your children and attempt to understand their perspective.

A third reason why I feel the autism matrix is full of baloney is the incorporation of photos of actual autistic people and how they were categorized based on what Escher believes they fall on the spectrum.  Let me be clear, she is NOT a professional who gives out diagnoses and assessments.  To arbitrarily make assumptions of a person's abilities, intelligence and support needs and to determine where they fall on the spectrum is unethical and also disrespectful to those individuals whose photos were used.  I doubt she had permission from every single person who was featured on the matrix to use their photo.  They probably will feel offended that she violated their privacy and that she made assumptions about their abilities, support needs and intellectual abilities.  It is also likely she had only  artificial one-time encounters with some of these people (e.g. lunch date, hearing them talk at conferences) or through film clips.  Watching a film clip or hearing a person speak at a conference or a luncheon does not give a full picture of the social, adaptive and intellectual functioning of a person with autism.  It is only when you have a close relationship with someone with autism and you have repeated contact with them that you will gain a more accurate understanding of their strengths and weaknesses.  Escher probably doesn't know all these individuals on a strong personal level to make that determination on  where they fall on her self-created matrix.  As an autistic self advocate, I would be pissed if my photo was featured on her matrix and that she made assumptions of  my social and adaptive skills and intelligence without knowing me on a deeper level.  Knowing that this matrix groups people on the spectrum based on external characteristics, I would probably feel betrayed more than anything.  I would feel so guilty that my own experiences were used against me  to further her agenda of  the separation  between more impacted autistic people from less impacted autistic people.  To sum this section up, people with autism are entitled to the right of privacy and respect in regards to their personal information.  To be placed in a vulnerable situation in which your photo is being displayed out to the public without your knowledge is not only wrong but is downright cruel and violates the rights of autistic people.

In sum, I feel that Escher is one of those parents who don't have the best intentions for the population she claims to represent.  Instead, I feel that she is using this matrix  to draw attention to herself and her family.   From reading the beginning of this article, it might come across that she supports the heterogeneity of the autism spectrum but in reality she is reinforcing the functioning hierarchy and the justification to deny supports to those externally less affected with autism like myself since I don't come across as disabled like her own children. People with autism are complex and what you see on the outside doesn't always match on what's going on internally.  Intelligence and level of speech does not give an accurate estimate of a person's level of social and adaptive functioning and support needs.  If you think that there isn't anyone else that is reacting negatively to this post or that self advocates are the only ones angry to the autism matrix, there are several negative comments at the bottom of her article.  If you want to read a great critique of the autism matrix and everything wrong with it, parent advocate Shannon Des Roches Rosa wrote a great post on how this matrix hurts the autistic community..    The autism matrix  and the ignorance of people like Jill Escher shows that we have a long road ahead in terms of promoting true autism acceptance and compassion towards autistic people.

Sunday, April 16, 2017

The 7 facts I want people to know this Autism Awareness Month

As we all know April has been designated as autism awareness month.  This is the month when famous monumental buildings" light it up blue"and  people wear blue puzzle pieces on their shirts and put autism awareness decals on their cars. It is also the month when one of the well known autism organizations has an annual walk to raise funds for autism research (though very little of it goes to support actual autistic people).   As an autistic person, I am happy that more and more people are starting to be aware about autism as it becomes more prevalent in modern society.  However, we have a long way to go in terms of really understanding this complex condition since there still seems to be ambivalence of fully embracing autism into society.  As many other self advocates point out, there is a difference between being aware of autism and accepting it.  It is the "acceptance" part that we as a society should be working on.   With the goal of autism acceptance in mind, that I want to share some facts about autism from someone who lives with this condition.

1. No two people with autism are alike
As I wrote earlier this year, autism is a very heterogenous condition.    In less fancy terms, autism affects each person differently.  Using terms such as "high functioning", "low functioning", "mild", "severe," "Aspergers" "classic autism" etc. doesn't accurately capture the whole entire spectrum of autism.  In fact, there maybe thousands of different subtypes of autism which in the future the spectrum of autism may disperse into different diagnoses and conditions  as we get more insight and studies  examining the different types of autism.  Throughout my journey living with autism I have met numerous individuals on the spectrum  as a result of my self advocacy work and being involved with different activities and groups. They all have different struggles and perceive autism differently than myself.    With that said, it is important that we focus on the individual needs for someone on the spectrum.

2. Functioning labels do more harm than good
In the autism community, there still seems to be an urge of grouping people on the spectrum based on where they fall on the spectrum.   I know people use these terms to make it easier to understand autism and to get some understanding of the abilities, deficits and support needs of a child or adult on the spectrum.  However functioning labels don't account entirely the talents and support needs of an individual with autism since they often have uneven development in specific domains.. Also, functioning labels are a disservice for both those labeled "high functioning" (those individuals who can pass easily in society) and those labeled "low functioning" (those individuals whose autism is more intense and involved).  For those individuals who can easily pass in society and whose autistic symptoms are less obvious, our struggles and needs for supports are dismissed by the greater society as well as the various governmental systems and institutions that provide supports for those who have special needs.     In other words, our "bad days" are discounted as merely quirks and we are often told that "we should work harder."   As someone who is able to pass fairly well and be labeled "high functioning,"  I want people to know that I still need help and support to be able to navigate  my daily life.For those individuals whose autistic symptoms are more obvious or for those who are nonverbal, their abilities and strengths  are dismissed as people tend to focus on their deficits or what they are "incapable of."  In my own personal experience, I know a lot of individuals who are nonverbal that have a lot to say.  They type to communicate and when you take the time to listen, you realize they have a lot of insight and are paying attention to the world around them.  To summarize this post, instead of using functioning labels to describe a person's experience with autism and prescibing treatements and supports based on these labels, we should look at autistic children and adults as an individual and focus on their own unique needs and wants.

3. Autism affects females too.
There is still this stereotype that autism is thought to be a disorder that affects more boys than girls.  However because of this assumption, many girls and women are either diagnosed late or remain undiagnosed.  They are often left to suffer in silence.  As an autistic girl, I was almost missed for an early diagnosis if it hadn't been for the watchful eye of one of my aunts who talked to a friend of hers who suggested that all of the symptoms that I experienced as a preschooler were related to autism.  This in turn led my parents to seek out help for me which ultimately lead to an official diagnosis when I entered preschool.  However, I truly believed I could have received an autism diagnosis a year earlier but I think because I was a girl and did not fit the traditional stereotype of autism, I was not considered for a diagnosis at that time.  However, I noticed over the years that I experienced autism differently than my male counterparts  due to the fact that I was a girl.  I noticed that the boys experienced their autistic symptoms more intensely and had more social deficits than I do.  However as I addressed in my post "Why autism is a feminist issue", most of the research literature that surrounds autism in terms of intervention and treatment utilizes a predominantly male sample which make these treatments take on a more "masculine approach".   There needs to be more understanding about how autism affects both girls and women as well as interventions that are tailored to their unique emotional needs.  The good news is that more researchers are becoming interested in examining gender differences in the presentation of autism and that  recently the popular children's television show Sesame Street added an autistic girl as an official muppet to the cast..    I am glad that we are stepping in the right direction, in showing that autism affects females as much as males and that gender bias is the reason why so many girls and women are missed .

4.  Autistic children grow up to be Autistic Adults
When reading different articles regarding autism online and on facebook, there still seems to be an underlying theme that autism is thought to be a childhood disorder or only affects children.  It seems as though adults on the spectrum are thought not to exist or that they "outgrow" autism.  While it is true that autism is commonly identified and has its onset in childhood, we need to start realizing that autistic people don't stay children forever.  Just like other human beings, we grow up and mature but that doesn't mean our struggles and our unique needs  go away when we turn 18.   Unfortunately as autistic people get older the availability and funding for crucial supports, accommodations and services becomes less and less.  As a result there is a crisis in which there are a lot of children who are reaching adulthood and no adequate resources to support them in terms of housing, employment and social/recreation.. Hence, this is why autism acceptance is crucial because it is based on  reality and accepting the fact that autism is a lifelong condition and we don't "get over it" even if some of us had an early diagnosis and got intensive services in childhood.  We need to educate businesses and other organizations on why people with autism would make great employees as well as opening up their minds on providing accommodations that would help autistic people maintain employment.  Universities and colleges should be more open in providing supports that  go beyond basic academic accommodations that also address the the social and emotional needs of autistic students as more of them plan to pursue postsecondary education   There needs to be more providers (therapists and occupational therapists) who are willing to serve adult clients.   Lastly, there also needs to be more of a focus on community based services and options such as supported living rather than just on segregated living arrangements such as group homes for those on the spectrum who are capable and/or want to have more of a inclusive living situation.  The bottom line is that autistic adults deserve to get the attention and supports they need to live a great quality of life just as much as children with autism.

5. The term "age appropriate" is subjective 
As someone on the spectrum who has interests that are targeted for a younger audience, I have always had a problem with the term "age appropriate."  As I wrote a year earlier of how I feel about this concept, it has the negative affect of oppressing individual expression and happiness in those on the autism spectrum.  It is based on someone else's view on normality and by oppressing these interests, parents and professionals are missing out on an opportunity to connect with an individual on the spectrum.  For older children, teens and adults on the spectrum, cartoons such as My Little Pony, Sesame Street, Disney etc.  and other activities designed for younger children bring intense comfort and predictability and can serve as a remedy from a world that can be unaccommodating and sometimes hostile to our differences.  Also by imposing restrictions on hobbies and activities that are not developmentally appropriate, we forget the fact that there are adults and teens who are not on the spectrum who like cartoons. In other words, when we devote so much energy  pushing age appropriate interests, we put the disability first ahead of the individual.  We forget that everyone has different interests and preferences and have different ways to enjoy their leisure time.   This is not to say that we should not introduce new hobbies that are more mainstream, since it is important for people on the spectrum to have diverse interests and experiences.  But, if an activity makes someone happy, why should we discourage that interest/hobby just because the majority of our same age peers perceive it as childish?   The good news is that more people in the autism community are openly challenging this subjective social norm.  For instance, one of my favorite bloggers who is a mother of an autistic daughter wrote that we should focus on what's person appropriate instead of age appropriate.  To see parents who are allies and who advocate acceptance of these interests, shows that we are moving in the right direction.

6. Independence is overrated and that we all need help at certain points of our lives
The central goal of most autism treatments and interventions is to make the person self sufficient.  It is the goal most parents strive for their children and some self advocates themselves want to be independent.  While it is important to learn how to do things for yourself if you want to have greater participation in society, it can be a scary concept for others on the spectrum.  This is especially true of my experience.  Starting from my adolescence and even today, the concept of independence brings a lot of anxiety and uncertainty.   My main fear of independence and self sufficiency is the expectation of navigating a world that is often not understanding of my special needs.  We are aware that the world is not equipped to dealing with the needs of autistic people.  I think that more professionals and parents need to recognize this fear in their children and clients and to be more sensitive and try not push so hard when it comes independence goals.    Another reason why independence is overrated is that there are  those on the spectrum that can't be independent since they need help with basic day-to-day tasks.  That does not mean that we should look at high support individuals with pity because they cannot due basic tasks we take for granted.  With that said, I feel that therapists and other professionals that work with autistic individuals need to emphasize more that it is okay to ask for help and that no one is truly self sufficient.  Autistics like myself have concrete black and white thinking in which when we think of being self sufficient, we believe that we should always be capable of doing things for ourselves and that we don't have the right to ask for help.  To sum this section up, it is okay to depend on someone to assist us if things get too overwhelming and that just because you need help in your day to day life, it should not be a shameful thing. The way I look at independence is this:  We should all strive  for a level of self sufficiency that is comfortable and manageable to us.

7.Milestones don't determine  whether someone on the spectrum will live a successful life

Even today in the autism community, I still read and hear parents relish  over the fact  about how their child "will never marry, never drive a car or go to college etc." just because their child has autism.  Here is the thing about milestones: they will either happen, be reached at a later age than normal or not be reached at all.  We get so hooked on milestones because autism is diagnosed as a result of a young child missing crucial milestones in terms of talking, socializing as well as self care skills.  However we cannot measure an autistic person's self worth based on whether they achieved certain rites of passage such as going away to college, getting a driver's license and getting married.  There are some autistics that never attend college, never get married or never drive that are doing extroardinary things.  For instance, although I got my college degree, I still don't drive and am not currently nor interested  in being in a romantic relationship but I have steady employment and have self published an autobiography about my life.  I use to get upset over the fact of  not reaching certain milestones on a normal timetable like driving or not having move into a dorm at 18, but I slowly realized that I have my own path and found success and happiness in other ways.  Just like the term age appropriate, milestones are prescribed based on someone else's notions on normality.  I believe autistics are here to teach us that there are multiple definitions of success and that self worth isn't define by the amount of milestones we reach.

These are some of the main takeaways I want people to know this April.  We need to accept our population's unique development, quirks and characteristics and to make the world a more friendly place.  I came up with these facts based on what I learned throughout my 20 year journey with autism.  We have come a long way from the early 90's from when I was diagnosed in terms of understanding autism and our knowledge is constantly growing.  This is why it is important to respect and listen to autistic self advocates since they have helped widen our perspective of what it means to be autistic. This is the main reason why I started a blog a year ago.  I wanted to promote and spread autism acceptance beyond the month of April.  I hoped that I had enlightened people with this blog post.


Tuesday, March 28, 2017

Why Self Determination is important for people with Developmental Disabilities

In California, a recent law was passed called Self Determination which will change the way those who are eligible for regional center can receive services.   Under this law, individuals with developmental disabilities will now have more of a voice in how they want to receive support  as well as promoting integration and inclusion.  Under the current system, services are often given and delivered based on a system of vendorization.  With the vendor system, your regional center has to have a contract with existing agencies and providers in order to get state funding for services.  Unfortunately under this system of vendors and contracts, there is great inequality and disparity in terms of the number and quality of services available depending on where clients and their families live.    This has great implications and consequences because it affects the quality of life in which some individuals will get support which will enable them to live a great quality of life while others probably won't have that same opportunity based on which regional center they are a part of.  For these reasons, the self determination law is crucial because it allows clients to bypass the vendor system and to exercise greater control over important aspects of services and supports.

Now I am going to talk about my own experience as to why I am happy about self determination as both someone who lives with a developmental disability as well as someone who is a client of the regional center.  For starters, I became eligible for regional center services  when I first got diagnosed in preschool.   With the exception of paying for me to attend various summer camps and my early intervention program at UCLA  as a child, my family did not rely on regional center for services such as therapy because the quality of these services were not as great.   Instead, we paid out of pocket for such  services.   Sadly as one enters adult services,   the lack of quality providers and services becomes even more evident in one's life as special education services end.  This is a true depiction of my experience when I entered adult services seven years ago.  I remembered when my mom and I toured various day programs, I was shocked about how these programs were run and that everything was group based and segregated rather than individualized to meet the client's needs.  Often times, there were consumers with various diagnoses and abilities often clustered in a room together doing the same program.  It was very depressing.  Another encounter I had with adult services in which I utilized regional center was with a supported living agency.  A few years ago, I was preparing to move into a dorm and I wanted someone to help me with developing independent living skills.   I met and interviewed with the coordinator/supervisor of one agency that my case worker referred me to and she seemed really nice and was interested in what I wanted to say.   Since she seemed to provide a good impression I decided to go with her agency.  A few weeks later, I got a call from another woman who wanted to meet with me in terms of what type of support I needed help with.  I was under the impression that she was going to help me find support people within the agency that would be a good fit with my personality.  As it turns out, I found out that she would be the person who was going to work with me.  I was a little shocked  that the agency did not even think to check with me of what I was looking for in a support person before assigning this woman to me.  That should be the number one thing that most providers should do before assigning support people to work with consumers since people with disabilities and their families are particular of who works with them.  This is one way that people with disabilities are deny a sense of agency within the system.   There were some good qualities the woman assigned to work with me possessed.  For instance, she was good at helping me in the kitchen in terms of cooking.  However, I could tell that she didn't have the right personality to work with me.  She was passive and I could tell she was not into her job. Not only that, she lacked common sense and good judgment.  One time, she picked me up from school and I noticed that her car had broken seatbelts.  Since she had a trainee with her who happened to sit in the front seat,  I was forced to sit in the back seat which had the defective seat belts.  This was a huge liability issue and it almost put me in danger.  When I brought it up to her, she didn't  get how big of a deal it was that she was driving clients around with broken seat belts in her vehicle.    Did the agency think to inspect her car before she was allowed to drive clients to make sure it was safe?  My experience with this provider is demonstrative of the lack of oversight that often occurs in regional center services.  They often hire inexperienced workers , lack training and offer low pay with a lot of staff turnover.  As I got involved in the autism self advocacy movement and became a active board member for my local autism society, I noticed a lot of families had issues with regional center services from not getting services at all to getting subpar services.  In addition, regional centers are often inflexible of customizing services since they require a agency to be vendored which prevents out of the box thinking when trying to help clients and their families.    

This is why I am for self determination.    As stated before this new law allows me to have more control in how I want to receive the support.  For instance, I can choose who I want to hire to support me rather than having to use individuals that are arbitrarily assigned to me by a agency/provider.  I also liked that the law allows for more room in what types of services to be funded.   Most of all though, self determination presumes competence in people with disabilities and is based on the premise of inclusion.  People with disabilities often feel the need to be in control of their lives.  The power of choice and control, leads to greater life satisfaction.  I can say from personal experience that whenever I had choice and control over something important in my life, I felt more happier and more satisfied versus when things are chosen for me based on another person's wishes.  I know there are opponents against self determination with those concerned that it will enable consumers to make bad choices.  But like anything else, there is a system of "checks and balances (i.e. supported decision making, independent facilitators).    In the long term, having self determination within regional centers will lead to happier outcomes for people of varying abilities.  It restores the true function of regional centers: by effectively serving  consumers and their families.

Tuesday, February 28, 2017

My experience with behavioral therapy

I mentioned in passing on previous posts  that I received behavioral therapy and that my therapist was the one who encouraged me to write a book.  Since this is a widely discussed topic in autism circles, I wanted to write in more detail about my experiences with behavioral therapy.  It is with this post that I want to discuss what I liked and dislike about receiving therapy as well as what I have learned throughout this process.

I went to various therapies in the likes of social skills classes, occupational therapy and speech therapy since getting diagnosed in preschool.  I don't remember much about these therapies to have an opinion since I was really little.  I did not receive the 40-hour a week ABA therapy that is prescribed to most people on the autism spectrum since it was too costly and my parents did not want to have therapists constantly around our house for so many hours a day.  It wasn't until end of middle school that I started getting true behavioral therapy.  Luckily, I did not receive the traditional Lovass style ABA that many autistic self advocates complain as trying to make them indistinguishable from peers,  although the behavioral agency that worked with me in eighth grade had a IEP goal that treated my need for proprioceptive input by jumping up and down as a behavior that needed to be extinguish.  After the agency, I started seeing a privately paid behavior therapist that was recommended by my mom's friend who also had a daughter on the autism spectrum.  As stated previously, the reason why my therapist was brought on because I had great difficulty regulating my emotions as well as having great difficulties socially.  My parents were concerned that I was entering high school  I did not have the tools to effectively  manage the transition and deal with the demands.  At first, I was resistant to working with another therapist since I had a bad experience with the agency that previously worked with me.  However, when I first met her, I was incredibly shocked about how personable she was.  During our first session, she promised that she wouldn't push to do things I wasn't comfortable with.  This made me more receptive to receiving therapy.

I am now going to talk about how I benefitted from behavioral therapy.  For one thing,I learned to regulate my emotions better to the point that I no longer throw meltdowns on a daily basis.  I am also happy I no longer have to rely on medication to effectively manage my anxiety.  Part of how I learned to manage my emotions was through the zones of regulation curriculum.  The zones referred to colors that represent the various moods and emotions a person experiences ( e.g. green means calm, yellow means  stressed out/anxious and and red means upset/angry).  During our sessions, my therapist and I would write out the various antecedents and try to match them to the appropriate zone.  Once I identified the specific triggers that made me go into each zone or mood, I was able to gain a deeper understanding of my emotions which led us to develop a series of coping strategies to learn how to manage when I am in the red and yellow zones.  Another benefit I gained from behavioral therapy was that I was encouraged to develop self advocacy and self determination skills.  To achieve this,  she let me set the agenda for our sessions of what I wanted to talk about and work on.  As stated previously, she encouraged me to write my thoughts down in my journal which allowed me to write a book.    She also made me more self reflective by making me go deep by "unpeeling the various layers" of what is bugging me.  This allowed me to have a lot of Aha moments during therapy and allowed us to problem solve.  I also learned to put things into perspective in therapy by drawing a line down the piece of paper of what I have control versus what I didn't have control of.  The bottom line is that if I didn't receive behavioral therapy when I was younger, I wouldn't have achieved so much like graduating college and getting my first job.

Now I am going to discuss some of the things I don't like about behavior therapy and how I feel it should be improved.  My biggest criticism that I can think of is that behavioral therapy is very one dimensional or that it is so focused on skill building that it doesn't take into consideration other things like mental health.  I started realizing this as I got older as I got more in touch with my core values. An example I can think of was when I was sent to a two week camp against my wishes that my therapist was running during the summer before my senior year of high school.  This "camp" was not your typical camp in which it was full of arts and crafts and fun activities.  There were only four campers in this camp and we all stayed in a small house.   During those two weeks, I felt that my therapist wanted to use that camp to emphasize teaching skills and to see how well I can do independent living skills.  This was measured through various activities such as doing an exercise in learning teenage trends by sorting out what was "cool" or "uncool."  Another part of the camp that I did not like, was that all of us had to do chores like clean the bathrooms or kitchen.  I felt frustrated and I felt that I was put under a microscope.  I let my feelings out by rebelling at the camp.  Another issue or criticism I have with behavioral or any therapy for that matter was the disconnect that sometimes occurs  between therapist and client. I know that there are strict confidentiality laws which prohibit a therapist to get deeply involved in the clients' lives but in the autism world  just spending an hour with a therapist sitting and talking  is not enough.  My therapist only saw a small fraction of my life but was not there for day to day stuff like my parents and aides were. She had other clients and other responsibilities.  The fact that there were 23 hours and 6 days that she didn't actually see me led us to have some disagreements about how to approach certain things and I sometimes felt she wasn't  seeing where I was coming from on certain things.  A final issue that I had with behavioral therapy was not so much the therapy itself but sometimes with my therapist's personality.  As much as my therapist was my greatest ally and I felt that I can confide on her for most things, there were times I felt that she was a little too confrontational during our sessions.  Towards the end of last year, I felt her getting increasingly inpatient during our sessions as she started adding more things on her plate (such as opening  her own business).  For instance, she was so concerned about me taking on my recent job as a behavioral aide that she started questioning every aspect during our sessions.  It got to a point that our sessions would make me end up in tears and it wasn't helpful anymore.  After  10 years of working together,I made the hard decision to stop therapy because I felt it wasn't helpful to me anymore.  I wanted to have a new start without having to turn to a therapist about how to live my life.

My 10 year journey with behavioral therapy shows that therapy can be beneficial to optimizing outcomes but there comes a point that it may not be helpful anymore.   I know that there is a lot of controversy regarding behavioral therapy with some self advocates having strong opinions about it.  The truth is that with the right therapist and right approach it works.   I learned so much about myself  and  gained a deeper understanding about my thought process thanks to my behavioral therapist.  She taught me skills that most neurotypical people my age haven't mastered yet.   Her personable approach is something I admire about her which helped me warm up to the idea of therapy.   At the same time, things can change in regards to the rapport between therapist and client.   Don't be afraid to stop therapy if you find that you are having issues with your therapist.  As stated previously, my therapist and I worked really well for 10 years before it got to a point where it wasn't working out.  It maybe time for a new approach or find other avenues in which to receive support. My experience has also given me the insight that behavioral therapy might be beneficial at a certain developmental stage but can be less effective or can have detrimenttal effects as one gets older or moves on to another stage of life.  This shows that autism doesn't go away but it needs to be treated differently throughout the various stages of life.

Sunday, February 5, 2017

There is no one way of being autistic

"If you met ONE person with autism you met ONE person with autism."  This is a phrase that is frequently tossed around in the autistic community.   As a autistic self advocate, I could not have agree more with this saying.   So why does it seem people often forget this important wisdom when writing and discussing about autism.  I cannot tell you enough about how many articlesand books that I have come across that takes a cookie cutter "one-size-fits-all" approach regarding autism.  This comes across as  author giving "advice" and uses commanding language like the word "should".  Even self advocates themselves sometimes phrase stuff in their writing that comes across that others on the spectrum experience the world the same way     I understand that autism is a very complex condition to understand.  People often crave something concrete and if you are a parent who needs help and guidance on how to raise a child with autism, a professional who wants to better help their clients or a self advocate who want to better understand their condition, I get why these instruction-manual and a more standardized-universal approach can be helpful.  The problem lies when people take certain perspectives or approaches on autism and thinks it should be applicable to all autistic people.  When you take the experience of one autistic person and apply it broadly, you are ignoring the vast diversity that exists in autistic community. An example of  the universalization approach to autism I can think of  is Temple Grandin.    Don't get me wrong, Temple Grandin is an exceptional woman as she beat the odds and got a Ph.D in animal science and is a widely acclaimed speaker and author.  She is also the first one to speak out for autism acceptance and point out the extraordinary gifts and talents of autistic people.   However, I feel that people treat her as a "autism messiah" and that her perspective and experiences of being autistic applies to everyone on the spectrum.   This is unfair and problematic because it creates a false illusion that ALL autistics are like and should be like Temple Grandin.    Temple doesn't have the personal  experience  of what life is like of being a nonverbal autistic (especially those who type to communicate), the experience being part of a ethnic minority group or  being a LGBT  etc.  The list could go on and on but the point being is that different perspectives are overlooked or not given much attention in the autism community when we just give spotlight to the words and insights of one autistic person.

Going back to the beginning of this blog post of people craving simplicity or clear cut guidelines when dealing with autism, you might be asking of how do you treat autism or what should I do with myself. child or client.  My advice to you is to accept the natural variation of experiences that exist in the autism community and to focus on what is relevant to yourself or your child and what you want or need.    Autistics are like ordinary people with different experiences, upbringing, and viewpoints and are not always going to agree with each other.  An excellent example illustrating the vast diversity that exists along the spectrum is through comic Rebecca Burgess's reference to autism as a colorwheel..  A color wheel is filled with many different shades of colors rather than concrete primary colors.  The autism spectrum is the same way with different shades or variance in how different people experience autistic symptoms.  For instance some people with autism are social and want a lot of  friends while others are more shy and are happy with a few social connections.  Some autistics  have more issues with there sensory system while others have fewer issues in this area.  To conclude this post,  each autistic person has a unique story with valuable insights on what it means to be autistic.  Therefore, it is extremely important for self advocates, parents and professionals in the greater autism community to be more open to hearing different experiences.

Photo credit: Rebecca Burgess (comic)

Saturday, January 21, 2017

Self acceptance and Self Care

This is kind of related to an earlier blog post on being a perfectionism on the autism spectrum that I wrote last month.   It is about developing a sense of  self acceptance and care for individuals on the spectrum.  I consider this a goal and New Years resolution to develop more self acceptance because I feel that I will feel more happier and liberated.    Believe it or not, I am constantly criticizing myself  over my beliefs and choices even though I know what I want for myself.  This comes in the form of  constant questioning, doubting and cross examining my needs and wants.  Unfortunately this has the consequence of creating unnecessary anxiety and is a form of self-injury.  I feel that my brain is constantly attacking me and I am never satisfied of  myself and where I am now in my life.  For instance, I feel that I should be a more thoughtful person than I am now and call myself a "selfish" and self centered person because I have natural desires of wanting things for myself.    Another habit related to my inability to accept myself is my constant comparison to others and the use of "should" statements.  When I see friends or peers doing something I am not yet doing, I feel that I should be on the same track as they are if I am to be on track to a good life.  

How I developed these self destructive habits has to do with the external situation that I currently live in (being a autistic person living in a neurotypical world) and what I was subjected to  during my formative years.  As stated previously, I was placed in various therapies in which I was constantly compared to peers (both neurotypicals and others with disabilities).  When I was younger, my mother made these statements comparing me to my classmates as well as her friends' children who were a similar age. She would make these statements such as "someone so is doing this, how come you can't do this."  The people in my life made decisions for me that I necessary would not have made for myself if I was put into the driver's seat.   For instance, friends were chosen for me because my parents and therapists wanted me to be more social and to have the experience and more social opportunities available to me..    Although the intentions were good, it had the down side of creating a self destructive script that I do not make good choices in my life and my desire to be a "loner" (meaning I don't crave so many friends in order to be happy) was not socially acceptable.  It also didn't help that my behavioral therapist was the type of person who would sometimes cross examine me during our sessions and it would lead me to self doubt my decisions despite being confident about them internally.    It doesn't help that in the greater autism community, autistics are ranked against each other based on how they conform to neurotypical expectations.  All these factors that I was exposed to growing up has led me to internally believe that no matter the compliments people gave me or the accomplishments I have achieved so far, I still cannot internally accept myself or my core beliefs.

Luckily I am still young enough to combat these self destructive scripts and can lead a more happier life for myself.  My status as an adult allows me to make the choices in terms of how I want to live my life that I wasn't able to make when I was in high school.    How I am going to get pass the negative scripts that I acquired during my adolescence and early college years, is to focus on accepting myself the way I am.  This is accepting my strengths, accomplishments and also my limitations.  It is accepting the fact that there are going to be people in this world(both neurotypicals and other people with disabilities) who are going to be more accomplished  and more independent than I am but that doesn't mean that I am less deserving of the right to live a happy life compared to these people.  Another component of self acceptance is self care.  Autistics like myself were always taught to think more about other people and to put their desires first before their own.  However, as the saying goes is that you can't help others until you take care of your needs first.  Like neurotypical people, this rule applies to people with autism (perhaps more so, because we have a more  limited energy capacity compared to the average person).  The notion of self care can look different for each person since people have different needs and wants.  To look at my life as an example, part of self care for me involved hiring a part time support person  who can drive me around to various places in the community as well as providing companionship to me.   Although I can function without this person, hiring a community support  companion made my life easier since it frees myself from the drama and emotional baggage that a two way friendship often brings.  This is one way autistics can achieve self care.  However other forms of self care that worked for me as well as other adults with autism include finding other autistic people to connect with, finding a passion or special interest, watching cartoons or movies on the weekends  as well as many more activities that would be too long to list here.  Both self acceptance and self care remind all of us to embrace the journey and that there is on such thing as perfection.  Without self acceptance and self care, we wouldn't be able to function in our day to day lives.  I know for myself that it is going to take awhile to get over these self defeating scripts and to develop true self acceptance but I believe that one day I will get there.  Writing this blog post is one step towards my goal of self acceptance and self care.  If self acceptance and self care were more emphasized in autism interventions it would reduce some of the high rates of anxiety and depression that is so prevalent in this population.  I hope my post on self acceptance and self care would be helpful to those both on and off the spectrum who are struggling with this issue right now.