Monday, December 4, 2017

On Recovery and "Optimal Outcome"

In 2014, a New York Times article was published about children who have recovered from autism.  I know this article was written three years ago but still is relatively recent given that we only just recently started giving more attention to autism acceptance .   It is sad that a majority of mainstream media outlets like The New York Times can't preach acceptance and neurodiversity.    The emphasis on "recovery" implies the prevailing medical model on autism as some sort of disease.  It dismisses the fact that autism is a lifelong condition that will require supports and accommodations for each life stage.  The media's attention on autism recovery is a dangerous road to go down and can have some detrimental consequences for actual autistic people particularly for adults on the spectrum.  With that said, I will write about why the notion of an "optimal outcome" and "recovery" are destructive to the autistic population.

First, let's talk about what an "optimal outcome" is.    In the eyes of the neurotypical society, an "optimal outcome" is defined as an autistic person who can assimilate and achieve "normal" milestones such as having friends, going to college, living independently etc.   But are those on the spectrum that are described as having an "optimal outcome" necessarily happy and satisfied than those who are more significantly impacted by their autism?  Keep in mind that what is defined as an "optimal outcome" is based on deeply ableist notions of success.   In fact even those labeled as "recovered" from autism still struggle with various learning and mental issues.   What many experts and parents may not realize when they say a child has "recover" from autism is that they may be "camouflaging" or that they have learned various coping and social skills to blend into society.  However many don't understand the amount of energy it takes to have this persona of being normal and the toll it takes on our mental health

I am one of those on the "spectrum" that might be labeled by others as achieving the "optimal outcome" because I have learned so  much coping skills as a result of therapy to be able to pass in society.  In a brief encounter with me, you might even think that I "recovered" from having autism.  However, as I have written in my previous post, I struggle with constant anxiety and self doubt as a result of  learning early on that the only way to be truly accepted is that I fake "neurotypical"  In fact, at the end of each day after work, I feel exhausted from putting on this persona that on the weekends I feel the need for some downtime to recharge my energy.  In sum, while faking "neurotypical" enabled me to accomplish life goals such as getting through college and holding a full time job, the cost of that is the constant anxiety and the fear that  people will be dismissive of the fact when you need supports and accommodations.

Another major consequence on the focus of "recovery" of autism and the emphasis of an "optimal outcome" is that it allows some opportunistic service providers who practice behavioral modification strategies  to pray on the hope and desperation of families of newly diagnosed children.  Often these therapies such as ABA or Discrete child training often require a grueling schedule of 40 hours of week and is a big time commitment for parents.  This can be expensive for a lot of families which can require them to take out a loan in some cases.  The intrusiveness of this therapy regime may not be good for small autistic children who often need large amounts of downtime.  There are many other options that are less intrusive, demanding and compliance based.  There are options like floortime/DIR teaching, music therapy as well as ordinary occupational therapy, music therapy or speech therapy.  Expecting autistic children to carry on a 40-hour a week schedule is unrealistic and denies them from having a childhood as well as being disruptive to the family unit. 

A third consequence is that the strong emphasis on recovery and early intervention is that it diverts attention on to the needs of autistic adults.  As we are well aware, there is a crisis in adequate supports and services for adults.  This is because it is assumed that if autism is treated intensively in childhood, they wouldn't require intensive supports when they reach adulthood.  As a result we have less knowledge of what kind of supports and challenges that adults with autism face,  It also hurts autistics who were diagnosed as adults since there is very little that could help them.  Autism is a lifelong condition and we don't ever outgrow it.

It is ableist to emphasize "optimal outcomes" and "recovery" for autistic individuals.  Having autism is deep within our genes which means it is part of the person.  We need to stop defining self worth for autistics of how much they can do for ourselves or how many milestones we achieved.  If there was a cure for autism, I would not take it because I feel that it would mean taking a part of my identity away from me.  The reason why people with autism and other disabilities were placed on this earth is because we are here to teach society that there is more than one way to live a great quality life. 

1 comment:

  1. I wrote a post last year, "Optimal Outcome for Whom?"

    My most recent one discusses the problems associated with passing, at least from the perspective of my experience.

    I taught myself how to pass with a lot of intensive, self-directed effort at a young age. So my experience isn't the result of any therapy. But I think the parallels apply more broadly.