Anne spent most of her life feeling misunderstood until she was diagnosed with Autism later in life. Everything started to eventually make sense, even more so, when her family was all diagnosed with ASD and they begin this new journey together. She wants to write about all of this because sometimes one’s struggles are silent and only through efforts towards inclusion can we all be more comfortable to communicate our struggles. And as someone who is rejection sensitive, she often fails to communicate her struggles because she anticipates that her struggles will lead to further rejection and the cycle continues. She hopes that sharing her vulnerabilities leads to at least one person better understanding themselves or an Autistic loved one. She is looking forward to sharing more specifics about her struggles as a neurodiverse family residing in Pennsylvania.
View all postsBeing a Part of the Autism Community: The Positives, Negatives, and My Indifference
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Positives
Learning about the different aspects of being Autistic from others who experience it has been helpful. If you know you are different, but you lack the understanding of how to communicate those differences, you feel perpetually out of place in every scenario in all aspects of life.
Having found others within the neurodiverse community, I have been able to locate the terminology, which describes a phenomenon that I might experience. But not knowing those terms and how they are used – I often struggled to explain where the frustration was coming from. This is especially true in workplace settings and in terms of requesting reasonable accommodations.
Personally, learning about my sensory sensitivities and being able to communicate them has changed my ability to advocate for myself in employment settings. I was spearheading the hybrid movement long before the pandemic because I knew I could control my home environment enough to work more effectively than in a cubicle. But arguing that point pre-pandemic was significantly more challenging than it is to just look for remote/hybrid work post-pandemic. It was also very difficult to explain the sensory issues that would lead me to feeling overwhelmed at a workplace.
By reading how others approach these challenges, it has provided me with the appropriate language to request an environment that doesn’t lead to feeling overwhelmed or burned out.
Negatives
It’s hard to know which organizations and individuals are truly out to help the Autistic Community. One of the first things I wanted to do, was to try to help others and connect my children to others experiencing similar challenges… But I quickly learned some of the loudest organizations are too corporatized to be serving the Autistic population effectively. I am also very aware of those who seek to “assimilate” Autistic people into what society needs them to be.
One organization I came across wanted to leverage my abilities and behaviors as a model for others on the spectrum. This organization wanted to force my leadership skills into a box and for me to use my insight into the Autistic community as a model of behavior to train others to be more like me because I assimilate well.
I never thought an organization would be so blinded by their own endeavors to force others into applied behavior analysis situations. Applied behavioral analysis, alternatively known as behavioral engineering, is a psychological technique that utilizes methods grounded in the principles of respondent and operant conditioning to modify behaviors deemed socially meaningful. While this endeavor may seem acceptable to some, unless the individual is acceptive and willing to partake behavior modification can create a lot of unnecessary traumas on an Autistic individual. Needless to say, I was lucky I learned about the way this organization was leveraging their Autistic leaders prior to accepting a role that would have inherently caused me a lot of overwhelm and burnout.
Indifference
Many of the voices that are amplified on social media are not really educated to speak on the topic or they are representing views of their perspective of someone close to them that is Autistic. No one Autistic person has the same view or the same perspective that their parent or caregiver has, they also have a unique understanding of their own experience.
I have encountered a great deal of ‘self-professed’ neurodiversity experts and while their messages are not harmful, they are not beneficial because they take away from those who have meaningful experiences that are not #Trending among the voices that already have influence.
I do not know that this is the Autistic communities’ fault as much as it is just a side effect of social media. The same is true about many amplified voices nationally, especially, in terms of politics and advocacy issues. It is important to note that all Autistic experiences are not comparable, and the sharing of all experiences has benefits – it can just be frustrating because finding a needle in a haystack will always seem insurmountable.
I appreciate the ASERT network in providing a blogger-type platform to actual neurodiverse people, it offers opportunities to those smaller voices to be heard – among the louder voices already inundating the field with content.
Anne Brown
