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.