"Diversity and inclusion create the opportunity and culture for everyone to be treated equally." - Ty Howard
I'm going to start this post with a question -
"What does Autism look like?"
Bear with me and you will understand the basis for the question.
I work in healthcare and have for 30 years. We have education modules that are required to be completed by each employee on an annual basis. These are online classes on the education website which is fairly standard across the healthcare industry. Amongst those modules are lessons in "Inclusion" and "Diversity" and "Cultural Differences" and even "Bariatric Patients." We are to recognize the differences in our patients and assure that our care and response is appropriate and equal across the board. While we pat ourselves on the back for completing these classes to meet the required guidelines, the reality is that not every difference is treated equally or with inclusion.
This fact hit home with the arrival of a patient with autism.
I am on the autism spectrum. I make no secret of it, nor do I tout it and flaunt it for attention. It simply is what it is. I routinely get told that I don't "look autistic." Really? What does autistic look like? In the past, I have jokingly remarked, "It's because I parted my hair on the side." I personally struggle with nuances in communication; innuendoes and subtle comparisons escape me at times. I cannot tell you how many times I've been told, "You know what I mean!" as I blankly stare back and attest, "No . . .I don't know what you mean." I have worked hard to adjust to change, to imitate people that I felt were successful at navigating societal norms. At the same time, I have my OCD moments, my aversion to textures or tastes or conversely my attraction to textures with the need to physically touch items, sometimes having to explain when I forget to ask prior to touching someone's clothing (although for the most part I manage to ask first.)
The autistic patient in question was normally high functioning, however . . . there was a traumatic event that caused severe regression. Severe to the point of becoming non-verbal and later becoming incontinent. Because the spectrum of autistic behavior is so vast and there is very little education offered to healthcare workers, the response varied from the patient was "faking it" to misunderstanding how trauma can cause regression and disbelief that the patient had ever functioned above the level of presentation.
- Healthcare workers would make derogatory or hurtful comments in the patient's hearing as if she were deaf. The patient had no history of hearing deficit and was well able to understand what was being said although she was unable to respond.
- A widespread lack of understanding of behaviors exhibited by individuals with autism such as "stimming" or hitting objects or one's head on walls or floors due to frustration. These activities are less about self-harm than they are a culmination of frustration with no other way to express the emotions.
- Security officers who were called to stand-by when the patient's behavior escalated would make comments about putting the patient in restraints - which simply exacerbated the situation.
- Having a contingent of staff standing around when an outburst took place - it was as if they were looking for entertainment. The fewer people involved when an outburst takes place, the less stimulation is involved.
- Staff were getting upset with the patient when she was reacting to her overstimulating surroundings - rather than identifying what the stressor could be, they would leave her in the stressful surroundings and expected her to adjust.
- Sensory items that were provided for the patient such as a weighted blanket, headphones, a tablet, a nightlight with music, opportunities to go outside - were described as "giving in" or "coddling" the patient. No different than offering someone a drink if they are thirsty, these are SENSORY items needed to self regulate.
- There were looks of disgust or distaste on the faces of some providers who were frustrated with having to try to provide care for this patient who was born with a sensory disorder beyond her control.
Again, while I do not go about expounding on the fact that I have autism, I have never made a secret of it. The comments that I heard during this patient's stay, the reactions I observed, the aggravation of having to deal with a patient who was not "normal" was heartbreaking. While there were some who took the time to ask questions and go out of their way to learn more about autism and its many facets, there were many more who appeared to be angry that this patient even required care or didn't conform to societal norms.
I began to second guess and question my own standing in the community of my co-workers. Was I truly accepted for who I am? Were they being nice to my face but exhibiting the same look of disgust after speaking with me? Were the same comments made about me after I walked away? Were they questioning whether I could perform the duties of my position? I would come home so frustrated for this patient, I would cry and want to bang MY head. There were nights that I would run until I was too tired to run anymore to get the angst out of my system because I still need physical activity to regulate my emotions. I had multiple co-workers say to me, "You don't look autistic?" after learning that I was, indeed, on the spectrum. Some argued with me or accused me of trying to be funny. At one point, my immediate supervisor had to validate my statement that I was on the spectrum. (Apparently autistic folk cannot be expected to tell the truth when conversely, we find it very difficult to lie.) I made a Facebook post stating that for future encounters, when someone told me I didn't look autistic, I would counter with, "And you don't look stupid, but here we are. . . ."
Diversity. Inclusion. Cultural differences.
Apparently they don't apply to autism.
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