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.

 

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.

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.

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)

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.    

Perfectionism and Living on the autism spectrum

I want to discuss a very personal topic as it relates to how I view myself and how living with an autism spectrum disorder manifests in my own life.  Although I appear to be self confident when talking in front of people and doing speeches, the truth is that I struggle with being a perfectionist and feel that I am not good enough. This gets manifested in low self confidence, being concerned of how others perceive me , asking for reassurance all the time from family and others who work with me, internally questioning my beliefs and anxiety.   Unfortunately, as I grew older and accomplish more milestones such as graduating high school,  graduating college, and getting a job my perfectionistic ego has only gotten bigger.  I constantly feel that I should be doing more  than I am now and should not make any mistakes or short comings.  This attitude crosses all domains including work, friendships, how I view my autism as well as school performance.  On the plus side, being a perfectionist has made me achieve a lot and has helped me survive through college and pulling mostly A's and B's in my classes as well as helping me developing a good work ethic as an employee.  However, it has the detrimental effect of creating unnecessary anxiety and lowering my self confidence and self esteem and also creating unrealistic expectations on myself.

You might be asking what being a perfectionist has to do with living on the autism spectrum since typical people also  struggle with holding perfectionistic attitudes.  How this ties with autism is that from an early age,  we are put into  behavioral therapies and social skills training classes which  strive to assimilate us into acting normal.  Traditional behavioral therapies such as Applied Behavioral Analysis reward children for displaying desirable behaviors and ignores them for displaying autistic behaviors such as hand flapping, scripting, jumping etc.  This gets reinforced in schools through special education programs and goals written in the Individualized Education Plan which have a strict baseline dates in which such goals should be met.  This is a true depiction of my life as I look back of  when I was going through school and the trajectory of how I developed a perfectionistic attitude.  I went to a lot of therapies as a child and went through various social skills classes as well as starting behavioral therapy when I was in eighth grade.   Sometimes, I felt I was always placed under a microscope in which I felt that all of my behaviors were constantly under surveillance by my parents, therapists and support staff.   My behavior was always measured with data sheets, emails, monthly team meetings, annual IEP meetings etc.  A specific moment in my life in which I really felt that I was under constant surveillance is when I was sent to a two week camp (that I did not want to go) at my behavior therapist's suggestion during the summer of my senior year in which all the activities were closely monitored and all centered on learning cognitive behavioral techniques and to see how well I could perform independent living skills like cooking and cleaning. Let's just say that I was happy to go home when those two weeks were up.  Although the people in my life had good intentions and I wouldn't be in the place where I am now without all the skills that I learned as a result of these intervention and experiences, it contributed to my need in pleasing people and anxiety in needing to be perfect and normal.  My experience and others on the spectrum that I talked to who have anxiety related to the desire to be perfect shows that behavioral interventions and school programs should be less focused on making autistic people act and look at the world in a neurotypical way and be more holistic, relational, and to take into account the needs, thoughts and feelings of the student and client. Another aspect I would like to see in the development of new treatments and interventions for those on the spectrum is the focus more on mental health and developing autism acceptance and positive self esteem for those on the spectrum.

Now as a young adult on the spectrum, I am slowly learning to not be so perfectionistic and to get anxious over the little stuff.  I am learning that I am good enough and that I should not be so focused on what others think of me and to feel more confident in the choices I make instead of doubting and questioning them.  It will be a slow journey since I have held these attitudes for years but I feel that the journey of letting go of my perfectionistic scripts would allow me to develop a greater self acceptance and to enjoy each step of my life journey.   After all, it is about the journey and not the destination that counts.

Ableism and why I named my blog "Redefining Normal"

This post has been on my mind for awhile but have been getting sidetracked with life and adjusting to my new job.  However, I feel this is a topic worth talking about especially in the 21st century in which there are numerous social justice movements that fight for the lives of oppressed and marginalized groups in the United States.  It is about ableism.  Unlike other movements such as racism, sexism,homophobia etc. this concept is less known and discussed when it comes to social justice within American society.  However, it is a concept that pervades all aspects of U.S. society and has either directly or indirectly oppress and marginalized people with disabilities.  Unfortunately, there is no way to talk about this concept in a way that does not sound angry. So try to bear with me if I sometimes sound angry when writing this post.  Since this blog is about autism and to avoid this post from getting too disorganized, I am going to focus solely as to how ableism affects the autistic community as a whole.

I am not the only autistic self advocate that writes about ableism.  Autistic advocates such as Lydia Brown and nonverbal autistic, Amy Sequenzia talks about how ableism affects the autism community and  their experiences of being autistic.  Ableism is a powerful concept because it has the consequence of some autistics not having access to education and employment, having access to supports and accommodations as well as being a barrier of living a happy life.  Growing up, I have been exposed to ableist concepts that in turn negatively affected my self esteem.  This was either overtly or subtly and sometimes within the autism community.  Ableist concepts that I was subject to was the notion of age appropriate interests, pushing for complete independence/ self sufficiency and the notion that there is only one way of social connections with people and friendships which is the notion of peer groups.    I have internalized these messages by reading so many autism books written by neurotypical parents and professionals as well as observing the direct and indirect messages from family, some friends and support people.  For instance, I was encouraged to join clubs which included a lot of group interaction, to dress like the other girls in school and to socialize with more same age peers than adults. Although the people in my life at the time had good intentions,  it had the unfortunate consequence of creating and sustaining an ableist script in my head which in turn lead to my low self confidence in young adulthood in which I am learning to let go.
 Ableism also leads to false assumptions about the intentions and desires of people with disabilities.   For instance, in this media story a football player sits with a boy with autism who often wants to sit alone.  While on the surface it comes across as a heartwarming story to viewers it comes across as ableist by making the assumption that all autistics or people with disabilities should and want to sit with people and socialize during lunch.  Some people prefer to sit alone at lunch since it is their only time they can relax and take a break from being around other people.  I, myself am a  introverted person.  During breaks such as lunch, I prefer to have alone time since it  allows me to decompress especially if I am around people for most of the day.  Media stories such as the football player sitting with the autistic boy at lunch is an example of  "feel good" stories in which a neurotypical person is portrayed as "helping" a disabled person achieve "normal" or typical experiences is known as inspiration porn.    Inspiration porn-like stories have no direct benefit for people who have autism or other disabilities but instead portrays us as needy and that we should be treated with pity.

Challenging ableist views of society and that there is only "one" correct way to live and experience life is the reason why I named my blog "Redefining Normal."  I wanted to use this blog as an opportunity to educate others on how I see the world and to educate others that there is more than one way to live a successful and happy life.  .  However, the writings of self advocates like myself are under utilized as the works of well-known neurotypical experts and parent's accounts of autism are more valued by the greater society which promotes more ableist views on autism.  The good news is that we are at a time in which more autistics are speaking out and sharing their stories and that more people are willing to listen.  I think it is time that we have a dialogue about how ableism is pervasive in our society and how it is a social justice issue just like race, gender and sexual orientation.  If people are more aware and mindful of ableist attitudes, we have the opportunity to combat it and make society a more accepting and loving place for those who live with disabilities.