Mental Health and Autism: Why Acceptance is important

It is well known that individuals on the autism spectrum are likely to have comorbid mental health issues such as depression and anxiety.  However, it is a less discussed topic surrounding autism compared to behavior and social challenges etc.  As an autistic young adult with anxiety,  I can give some insight on the high prevalence.  A big part of it has to do with how we were slowly socialized either implicitly or explicitly that an autistic lifestyle is something that is defective and therefore it needs fixing.  In fact this article sums up the strong link of autism acceptance and the development of mental health disorders.  In other words, lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.  However, mental health and having a positive relationship with an autistic identity are not a priority when helping autistic people.  If mental health issues are mentioned in regards to autism, they are are addressed in a pathological way.  In this post I am going to write about my experience as someone on the spectrum that lives with mental health issues.

I have written about my struggle with anxiety in an earlier post.   However, in that post I talked about some of the symptoms of how my anxiety  manifests.   I never written that extensively about  the root cause of  my mental turmoil  being related as lack of acceptance of being autistic.   Although I come across as a "confident self advocate"  when I speak about my life experiences, the truth is that I struggle with deep self confidence issues and actually doubt some of my own advice that I give out sometimes.  There is a monster voice in my head that constantly tells me that "I am wrong" or that "I am not deserving of support"  and other negative scripts.  I constantly say "I'm sorry" to my family or others whenever I feel that my autistic mind takes over.  My monster voice is always constantly bringing me down by saying that I am not "entitled to my feelings because I am autistic" and battles with my positive voice or the voice of confidence.  I am so hard on myself and I blame myself for all the challenges that life brings me.

Lately, I have been wondering of how did I become this way or how did I develop such negative thinking which resembles mental self injury.  I then realize that the negative scripts and inner anxiety that I developed in my head today were the result  of years  of growing up and slowly realizing that disability is something that needed to be fixed.  Unlike the children growing up today with the neurodiversity framework, I did not come of age in which autistic advocates were respectfully regarded as the "true experts."   As much as I hate to blast some of my lovely support people like my therapist or my family members on this blog post, they unintentionally through no fault of their own, contributed to my negative script that I have for myself.    Before I go ahead and critique some of the intervention that I received,   I want to make clear that I am thankful that I have gotten interventions that enabled me get to the point where I am today.  The social skills, emotional and self advocacy skills that I learned during my adolescence enabled me to be the strong advocate I am today.  But for autism intervention, there is always room for improvement. 

Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment.  It was reinforced through behavioral therapy and the school system.    A few examples that I can remember was that I was pressured to join clubs and sit with a group of kids because that is how typical high schoolers socialized.  I was discouraged from socializing with adults such as the other aides at school or the computer teacher in middle school because it wasn't considered appropriate. I was socialized to learn about  the fashion and other interests that teens through social groups that my behaviorist made (e.g. the "cool" or "not cool" chart) in an attempt were to make me "fit in" better.  All these experiences and others have taught me that I should camouflage and suppress my natural self because I should appear normal.   Friends were chosen for me because people wanted me to be more social. I went along with the recommendations of my support people and parents and pretended to live as a neurotypical because I thought they knew best.  I tried all I can to suppress my natural way of being at the expense of my self esteem and acceptance of my unique neurology.

What the people who helped me didn't realize at the time was the future implications of my mental health as an autistic person.  At the time, the focus  was making me as self sufficient  and socially adjusted as possible by the time I reached adulthood that nobody ever considered what they were doing could unintentionally  affect my self identity and self esteem.  All this energy camouflaging myself in order to appear " normal" became mentally exhausting.  I started second guessing myself and internally beating myself up  over minor social infractions.  This is a big part of my anxiety living as an autistic person.

My experience with special education and ABA shows the dichotomy of interventions that are designed to optimize the quality of life individuals on the spectrum can also adversely impact  the mental health and self acceptance of an autistic identity.    This is what a lot of self advocates are concerned about behavioral modification programs because of the long term affects it can have on mental health in regards to autism.  This is why we need to preach autism acceptance and center self advocates in developing appropriate supports for autistic people.  That means we need to take their insights, feelings and desires into account instead of dismissing them. Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity rather than a problem that needs to be fixed.    Acceptance means a world where autistic people don't have to camouflage to appear neurotypical.  Acceptance also  means giving supports and accommodations to autistic people of all abilities and support levels when it's asked.  If  the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems (though not all) that  autistic people have will be lessened.

A self advocate's response to the divide between autistic adults and parents at a recent Government Committee meeting

This is a opinion/personal response to this recent article on NOS magazine  on the adversarial exchange that took place between autistic self advocates and parents of autistic children at a recent Interagency Autism Coordinating Committee  meeting which is a governmental body that sets the direction on autism research.    The clash between autistic adults and parents at this meeting is a reminder of the ongoing divide that continues to exist in our community.  From reading this article, I am saddened that there are some parents in our community that can't fathom the idea of  self advocacy or the idea that autistic people can attend and sit on committees and offer their opinions .  I know I am biased from writing this post since I am writing from the perspective of a self advocate, but I want to offer my two cents at the outrageousness of this meeting and the direction the Interagency Autism Coordinating Committee.  I also want to highlight some of the postives like how self advocates John Elder Robison and Sam Crane and nonautistic researcher Edlyn Pena  came up with excellent responses and defended neurodiversity and its principles of rights and humanity for all autistics.

I am outraged that a prominent governmental agency would allow autism warrior parents such as Jill Escher and Alison Singer to continue to discount the voices of autistic adults like myself.   Both of these women are known to hold anti-neurodiverse sentiments on autism and think that the only legitimate autism cases  are only those who are nonverbal and have significant support needs.    For instance,  Escher made a controversial autism matrix this past April that reinforces functioning labels while Singer made a disturbing comment on camera of  committing a murder suicide with her high support autistic daughter in earshot of her comment.  Despite the controversial histories of these mothers, they continue to hold high positions as executive directors for various autism organizations.  Perhaps what is even more reprehensible, is that Escher and Singer continue to make assumptions about autistic ability and support needs.   They believe that autistic people who can sit in a meeting and speak their opinions must not have medical problems such as epilepsy and G.I. issues or not need support etc.  Both Escher and Singer also assume that those with "intense support needs" also have co-occuring intellectual disabilities and therefore cannot understand the logistics of an official governmental meeting discussing research priorities.  These autism warrior moms think they are advocating for the good of autistic people but in reality I feel they are furthering their own selfish agendas. 

On the positive side, I applaud self advocates John Elder Robison and Sam Crane for defending the autistic population and to try to establish unity with autism parents.    The humility of Robison's comment about the duty he and other self advocates on the board of the IACC have to ensure that autistics of varying levels of support have the chance to live a great quality of life.  Of all the "high profile" self advocates out there, I admire John Elder Robison because he doesn't attempt to represent only one side of the spectrum (which is a common among those diagnosed with "Aspergers") and actually cares about autistics who are significantly more impacted  than he is.  When we do autism advocacy, we  often consider the whole entire spectrum which includes those who are nonverbal and requires significant supports in order to live in the community.  This is also what Sam Crane said about the need to presume competence in those who can't speak verbally and giving them a seat at the table at policy meetings.  Self advocates exist because we believe that all autistic people of all abilities are deserving of  rights and supports that will optimize their quality of life. Support shouldn't be a luxury available to only a select few but a necessity for all individuals on the autistic spectrum. This is a standard that I attempt to live by whenever I advocate for autism.

Another positive thing that came out from this meeting is from autism researcher Edlyn Pena from Cal Lutheran University.   She made two excellent points about diversifying the board of the IACC. She advocated that we need more autistics who type to communicate to be on the board of the IACC because they are underrepresented in all autism conversations.  She also made a comment of getting more autistic voices of color on the board, since autistic people of color and their families are relatively absent on boards of autism and other disability organizations.  As a person of color on the autism spectrum, I applaud Pena's statement since she is one of the few that is keenly aware of the lack of racial diversity in the autism community.

The relative absence of self advocates (only three out of the 31 board members are autistic) on the board on prominent governmental boards such as the IACC that affect research priorities shows why autism research does not align with the interests and desires of autistic people.  It is still sad that parents who have bigoted views on autism are still permitted to express them which causes a division for our whole community.  I am not saying parent involvement in the autism advocacy movement is not important but it should be secondary and alongside autistic self advocates.  We need more advocates from different backgrounds, abilities and support levels to be on boards on prominent autism organizations to offer their opinions about policy issues that affect our day to day lives.  There is the saying among autistic self advocates that "nothing about us without us."