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.

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