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.

The arduous transition to adulthood

This post has been on my mind for awhile, but other topics seem to take the lead when blogging.  I want to share my experience of transitioning from high school to adulthood/college.  As we all know, services for adults are very slim compared to the amount of services and supports available to children as well as adolescents still in the school system.   In the K-12 system, numerous services and accommodations such as one-to-one aides as well as having behavioral therapies are provided through the use of a IEP (individualized Education Plan).  As a result of these services, children with autism have a huge support network dedicated to their success not only academically but socially and emotionally as well.  I was very fortunate that I had a support network of school psychologists, aides as well as a in-house autism behaviorist for high school.  Having a team of people who cared about my well-being helped me to persevere through all of the issues and anxieties that plagued me through middle and high school.  However, this all changed once I got my high school diploma six years ago.  Overnight, I went from having a lot of support to no or very little support.  The only people who were still on my support team was my privately paid behavioral therapist and my parents.  While they provided help, it was not enough to address the large amount of transition anxiety that I was facing.  As a result, I had to navigate my transition to community college on my own with very little help.  Of course there is the disability center at college but they only provided academic accommodations that was geared toward those with learning disabilities as well as physical disabilities.   During my first year in college, my mom and I checked out various day programs recommended by the regional center but most catered to those who have intellectual disabilities and were low in quality.  As a result of losing my high school support networks and the limited number of  available supports that appropriately address my needs as a college student, I went through phases of anxiety, frustration as well as depression.  The periodic depression that I went through was characteristic of most of  my college years. These phases would happen when I felt there was a lot of expectations placed upon me, when I transferrred to a four year university and lived away from home for the first time, when my aide/social mentor left last year and my therapist was not as available to see me during a hard and challenging spring semester.  Despite these obstacles I faced I was able to graduate with a college degree this past December.

My story and experience shows that transitioning to adulthood whether if you got your high school diploma and college bound or someone who aged out of the school system (you can stay in the school system until age 22) is no easy journey.  It is also important to remember that just because you had preparation in high school to deal with this transition, does not alleviate the anxiety and does not mean that you will need less support than you received in high school.  I had a lot of preparation and skills training such as fading my aide by the end of my sophomore year, having a transition IEP, learning problem solving, self advocacy skills and emotional regulation as well as having a part time job internship at a department store my senior year.   Regardless, I still needed support and if anything I needed more support once I transitioned to college.  It makes me frustrated that  experts stress that if intervention happens in childhood and adolescence that supports normalization, they will easily navigate the transition to adulthood  but neglect to mention the anxiety that comes along with life transition for those on the spectrum.  This is why it is important for more autistic adults to share their experiences and challenges of transition to college, adulthood or work and employment.  It is also important that there needs to be a wide range of supports (in terms of employment, social and recreational and housing) that meet the individual needs and wants of autistic adults.  It is also important that future interventions for adults with autism should focus on making their lives easier instead of normalizing them or dehumanize them.