Sunday, January 7, 2018

One Size does not fit all when it comes to Supporting Autism and other developmental conditions

"One size does not fit all" is a phrase that is consistently tossed around in the special needs community.   People with autism and other disabilities vary in terms of characteristics, strengths, challenges and personality traits.  Yet the programs, supports and services that cater to children and adults with autism (and other conditions) tend to take a "one size fits all" model.  Some examples of program models that take on this standardized approach are group homes, social skills groups etc.  These programs are designed based on "deficits" and not designed from the needs and wants of the individual in mind.   This goes against the "spectrum" model of autism.

The problem with one size fits all programs is that it only effectively serves a few but not everyone.  These programs are not designed around the person's wants or needs.  Instead they are designed for the convenience of those who run the programs or distribute the services.  A lot of programs don't even consult with the population that they intend to serve but instead rely on the insights from  professionals, parents and researchers.  They also rely on "evidence based practices" when designing  programs and services for developmentally disabled individuals.  Don't get me wrong, these perspectives are important when designing services and interventions for individuals on the spectrum.  It becomes problematic when they are the only ones consulted  and apply their insights  to the experiences of all individuals on the spectrum.  Parents and professionals have limited knowledge of what autistic people (or other conditions) actually want or need.  This is why it is important to consult with autistics (or other disabled individuals) when designing support services for individuals with developmental disabilities.    It is a big reason why outcomes continue to be poor for people with autism and others with developmental disabilities.

In my experience  transitioning out from the school system into adult services, I was disappointed in the options that were available to adults.  This was evident in the day programs that my mom and I checked out in which people of different ages and abilities were all clustered together doing the same program. Another example of the "one size fits all" mode in action was when we checked out a postsecondary transition program that aims to help young adults with disabilities learn independent living skills a few years back.  The problem with the program was that there were "mandatory classes" that I had to take during the day which made me pursue my studies at a later time which was an inconvenient for me .    Another issue with the program was that they had a jam packed schedule for each of the clients.  There was always an activity scheduled from the morning all the way up to the evening.  I am the type of person who needs down time in between activities that demand a lot from me.  My sensory issues as well as how I process my environment make keeping a dense packed schedule overwhelming.  This leads me to my next point in this post about the lack of choice and control.

Perhaps the most problematic element of "one size fits all" program models is the lack of choice and control that characterizes most of these programs.  In the transition program I described above, I had to take "mandatory classes" on social skills and sexuality even though I've already been taught a lot of social skills and I was not interested in pursuing a romantic relationship.  To me, this would be a waste of time.  Another all too common scenario is people living in group homes not being able to choose their roommates, support staff as well as when they can eat, sleep etc.  I love to have control of all those things like choosing who I live with and who will support me.  People with developmental disabilities have their own preferences, needs, goals etc. that programs need to honor.  For example, one person might  do well in a group setting while another person might be more introverted and does better in a 1:1 ratio.  In programs and service designs that utilize a more standardized model, one person might get their needs and wants met but another person might not get the right type of help.   This is why most individuals with autism and other related conditions continue to have poor outcomes and are dissatisfied with the current options that exist. 

The good news is that we are in a paradigm shift in designing services and supports with the needs of individuals with autism and other developmental disabilities in mind.  There is a federal push that housing and other support services should be integrated and centered around individual needs.  I also wrote an earlier post on the California Self Determination law and how it brings back control  of state funded supports back to clients and their families.  Both these service designs recognize the extreme variability of individuals with autism and other disabilities and also gives them a sense of agency in designing their services and supports.  Adults without disabilities are able to make choices to shape their own lives so why shouldn't adults with developmental disabilities be allowed to make choices (that are appropriate to their level and with support from others) that can lead them to live more productive and fulfilling lives.    I am lucky that I was empowered to to live a self determined life by learning self advocacy skills to tell people my needs and wants and my family honored my choices and preferences. Some individuals with disabilities are not as fortunate to learn about self determination and to be empowered to make choices for themselves.   The federal push to make services and supports for individuals with disabilities more individualized and person centered sees the individual with a disability as a human being first before the diagnosis. 

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