Wednesday, April 13, 2016

The Problem with Functioning Labels

"I've never knew you were autistic if you haven't told me" or "you seem very high functioning" is a response I get all the time when I share that I have autism.  This is the effect of the functioning labels that are placed upon people with autism. Originally, functioning labels have been used in the medical  community to differentiate someone on the spectrum based on IQ, speech and level of independence,  The problem with functioning labels is that it paints a simplistic picture of someone's experience with autism and doesn't take into account of people on the spectrum who have "splintered skills" meaning depending on what areas or domains of a person's life you are looking at someone maybe considered "high functioning" but that same person will be considered "low functioning" in other domains in his/her life. To illustrate my previous point,  I am going to use a example that I have seen in other blogs such as Musing of an Aspie's post on functioning labels:  Sally is a articulate and accomplished young woman who graduated college with honors from a reputable private Christian college. She has self published a novel about her life with autism and has spoken in front of various audiences including parents at her old school district, college students as well as at conferences and senior centers.  Sally serves as a board member for a local autism organization as a self advocate.  She is also paid part time as a research assistant for a professor.   Jill is another young woman in her 20's.  She is very anxious, struggles with sensory and motor planning issues and self confidence.  Jill needs help with independent living skills, doesn't drive  and can't cook meals for herself.  To deal with her constant social anxiety and self confidence, Jill needs a one-to-one social mentor who takes her out on outings to practice social skills and get her out of the house to provide structure in her life.  Her hobbies and interests include Hello Kitty, Disney Princess and other cartoon characters that are equivalent to a little child.  When looking at these two young woman, one would consider Sally to be "high functioning" and Jill to be "low functioning."   What if I told you that Sally and Jill are the same person.  They are both depictions of my strengths and weaknesses.  This is why you can't judge and label someone as "high functioning" and "low functioning" based on what you see on the outside.  Depending on the day, context or situation or mood, sometimes you will see Sally but other times you will see Jill.

Another issue that I have with functioning labels is that those who are considered "high functioning" or less impacted with autism are considered "too capable for supports and accommodations." An example of this mindset is when people who are diagnosed with Aspergers get rejected from regional center services or the school district refuses to give a 1:1 aide to a student because she is too "high functioning" and is taking regular education classes.  This is why it is harder to find supports for those on the milder end of the spectrum especially when one ages out of the school system and into adulthood.  This is the issue that I currently face as an adult especially when it comes to employment.  There seems to be more supports and resources allocated to those who are considered more impacted because of the low functioning/high functioning dichotomy.  This is the unfair distribution of resources and supports that is rarely ever talked about publicly within autism conferences or the media yet many self advocates write about it.  I think it is time to move pass the medical classification of functioning labels and to look at people with autism as individuals and to allocate supports based on their wants and needs.

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