Recently, Spectrum news (a website that publishes news regarding the latest research on autism spectrum disorders) published this article written by Rene Jamison who runs a social skills program for young women on the autism spectrum called "Girls Night Out." In this article, Jamison stresses that autistic girls need help navigating social rules in more real world settings. As an autistic female who's had some form of a social skills intervention similar to the program being discussed, I find Jamison's article and her underlying argument very problematic and ableist. I do agree with the title of autistic people needing more real world experiences to practice social skills. It is her solutions that I disagree with. She proposes the age old idea that autistic females need to learn to socialize like their NT female peers in order to have successful lives. I find this very destructive on a psychological level because it indirectly tells autistic people that the way they socialize is the problem instead of the rigid social expectations and categorizations put forth by a neurotypical society. In this post, I am going to explain why I find Jamison's position problematic from an autistic's perspective.
The problem with a lot of the current social skills interventions especially the ones built for autistic females is that there tends to be a push of "gender" or "age" appropriate interests. Upon further research of the curriculum of the "Girls Night Out" program that is proposed in this article, one of the topics covered is "fashion" and "makeup" which are both stereotypically feminine activities. When I was an adolescent, my behaviorist and I along with one other girl on the spectrum did outings to the mall to female clothing stores and other activities which is a considered to be a "real life setting" in learning teen culture. This exposure made me temporarily traded my interests of Hello kitty and Disney Princess for fashion and designer clothing so I can fit in with my female peers. Looking back as a young adult, it was a painful process of letting those interests go during high school and it contributed to long term feelings of anxiety, inadequacy and low self esteem. To this day, I am still dealing with these negative emotions surrounding my love of "little girl" characters such as Frozen, Hello Kitty etc. Neurotypical teens aren't told what to like or are given didactic teaching lessons on fashion and makeup. In fact not all NT girls are into fashion and makeup. This is the point that I think is missed in Jamison's article.
Another issue that I have with Jamison's intervention and others like it is the need to get autistics to feel comfortable socializing in a group or what is known as a "peer group." As an autistic female who is more introverted and has sensory processing issues, the idea of being in a unstructured social group was a hellhole for me. In high school, I was made to join clubs as well as sit with a group of same aged peers. I felt so overwhelmed with the numerous conversations that were going on at the same time that I didn't know when to join in. I also feel that in groups, you don't get to know people on a more intimate level as well as them not getting to know me. This is why I preferred one-to-one social situations as opposed to group settings because aside from getting to know people on a more intimate level, you get the individual attention and it's a lot easier to socially manage from a sensory perspective. To sum this paragraph, some people on the spectrum (just like in the general population) are introverts, and they shouldn't be forced to socialize in a group setting if they don't feel comfortable.
Perhaps, the biggest problematic element of Jamison's article, is that I felt she used the article to promote her "Girls Night Out" program. In that sense, I feel there is a personal bias as well as self interest from the author in writing this article. I always get suspicious (as well as cringe) whenever a clinician writes an article on a website/platform that highlights our "deficits" in order to promote their program or therapy. The underlying theme of these articles is that autistic people won't have a good future unless they participate in the program or therapy. It is this very message that is very damaging as an autistic person. She also contradicts herself towards the end of the article by stating that the long term effects of her social skills program is unknown. On the plus side, at least she admitted this shortcoming of her program. As an adult autistic advocate who's been through social skills training, I can provide my insight that these interventions are part of the reason of long term issues with anxiety and insecurity. It is bad science that a research based website such as spectrum would allow a clinician to promote her program on their site.
In sum, I feel that Jamison's article though well meaning, is reiterating (in a different way) the viewpoint that autistic people are the ones that need to conform to a NT level and that we need "peer coaches" to help us learn teenage trends. It overlooks the fact that a lot of autistic females spend most of their young lives trying to emulate their typical peers to the point of exhaustion. This is the reason for the high levels of anxiety and depression in autistic females. As I stated at the beginning of this article, I do agree with Jamison that autistic people of both genders need more real world experiences to practice their social skills. This is why I hired a social companion/mentor to go on outings in the community to get that real world experience in practicing my social skills. However unlike traditional social skills groups, this type of intervention is relationship based on respect and there is no pressure to like things that are gender or age appropriate. In fact my mentor is working with me on my self confidence about being comfortable with my unconventional interests. Having a companion to do social outings was what worked for me but Jamison's intervention could work for some girls on the spectrum. Autistic girls are not monolithic in which one type of intervention would be effective for all of them. They are complex human beings with varying interests, challenges, goals and talents etc. just like typical girls. If we truly want to come up with more effective interventions that actually help autistic people, researchers need to consult with autistic people as well as individualizing supports for people on the spectrum.
Sunday, January 28, 2018
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.
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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