I’ve had an incredibly difficult time getting myself back on the writing train this past couple of weeks. I have been highly preoccupied. I recently discovered TED and found myself riveted to a video by Temple Grandin. Watching the video, I started sobbing and couldn’t stop. How did I not know that this strange way my brain has always interacted with the world is something that other people experience too? There was a word for it that, on the surface, didn’t make sense in the context of my understanding. That word is Autism.
My knowledge about Autism was limited to what is commonly acknowledged as a profound deficit in communication ability and the stereotypical eye contact thing. I had not read nor witnessed (due to a nearly absent social awareness and dialogue of) the diagnostic differences of how ASD appears in females, nor the sensory challenges ASD people experience. How limited of an understanding of this complex syndrome can you get? Yet here I was watching a female describe the exact way I see and interact with the world and calling it autism. So my support team and I have spent the last week investigating my medical and social history for the neurological signs that once uncovered, have become quite obvious.
I have spent the last 20+ years repeatedly seeking treatment and help for anxiety and depression which have been monstrously inhibitive to me leading a life I feel is productive and worthy of the intelligence and grace I see myself possessing. I’ve not had many relationships and almost every relationship (of any level) that I have had, has been problematic. I chalked that up to being raised in a dysfunctional family.
What has always plagued me is why I never seem to get better despite years of therapy, groups, personal research and at least five thousand different medications. When you ask yourself the question, “why doesn’t anything work?” enough times, you will invariably be led to having to address yourself as the person to blame. I have examined my own shortcomings so thoroughly, I’m getting an A++ on my karma report when I get to heaven, I promise you that.
I have also quite rigidly followed the rules society has in place without ever understanding the ten thousand unspoken and unwritten ones that are actually navigating your social cohesion. It has left me with an angst and anger and outright fear of people and social situations that is so pervasive, it is more along the lines of hatred. I cannot tell you how many times I’ve uttered the question, “Why do people suck so bad?” I sincerely thought (and still mostly do) that the way I was created, to literally feel everything, was the way humans are supposed to be and that the rest of the world is just plain mean for remaining so insensitive to the environments and interactions which so often undo me.
The single most gratifying piece of information I have ever come across in my life has left me speechless: I have a sensory processing issue. This extreme sensitivity has provided me with many gifts that I would not give up to be normal, but it has also caused challenges in nearly every aspect of my life. So above all else and despite being a little unnerved at this new information, I am relieved. Relieved on a level I cannot describe. For the first time in my life I feel a soul level hope that is not based around the faith that God will save me, but that I have the ability to address the root of my issues and begin the work to save myself and let my faith in God be the thing that motivates and inspires me.
Going back through the history of my life, replaying the scenes and experiences that have long remained buried has been astonishing in light of this new information. This impenetrable fear now has a crack. Attacking this issue in light of the knowledge of how these sensory overloads impact me, gives me a concrete place to take action.
I no longer have to feel guilty for being unable to force myself through the trauma of a Walmart trip (even though the treatment course for dealing with anxiety is by desensitizing). I can choose to find smaller shops with less opportunity for sensory overload and not beat myself up for being unable to handle a large scale store. It may cost more financially but the peace of mind of giving myself permission to navigate the world with this awareness is a gift of compassion that is opening the door to my own self-esteem and self-worth.
I am trying to come to terms with the embarrassment of how this undiagnosed disability contributed to my homelessness and the resulting PTSD related to it. This is what has by and large left me speechless. I am still very angry at what I witnessed from my fellow humans, my fellow American citizens, but I now see the places and opportunities that someone not experiencing ASD symptoms could have helped themselves and why I was not able to. What was once everyone else’s fault, is now colored with the myriad times and ways I misunderstood the social interactions that could have changed my circumstances.
Let me give you a couple examples because I think it is a very critical and unexamined area regarding the homeless crisis. Homelessness is devastating for anyone but the impact of homelessness and the potential for prevention in this vulnerable population should not go on being ignored. If we can become much more aware of how individuals with ASD are not only more likely to become homeless in the first place, but be unable or hindered in their ability to navigate the resources to get help, we could reduce the number of homeless ASD people in much the same way we have tackled homelessness amongst veterans. Education is the key.
It has long been a source of frustration for those working with homeless populations to garner compassion and resources when so much of mainstream understanding of homelessness is coupled with a fear hinged to the belief that all homelessness is a result of addiction, crime and psychosis. Or personal choice. Or laziness. Or an inherent disregard for society’s rules and expectations. I have seen first hand that this is a very limited way to view this predicament.
This shame based approach sucks no matter which way you cut it, but it is incredibly troubling and counterproductive when working with homeless ASD people. In my personal experience there are many issues that need to be addressed, in fact I wrote a book about it, but I’m going to highlight just two of them in this article for the sake of brevity.
- The effects of not having a safe place nor the tools necessary to escape sensory overload and
- not having knowledge of the social norms and scripts required to ask for help or communicate the need for it.
It boggled my mind that people would walk past me as I was starving and not offer to help. I didn’t think one was supposed to ask a stranger for help, I thought compassion is just something people do, so if they weren’t helping me it meant they lacked compassion or were incapable of judging me correctly as someone who deserved it. While I may be accurate on the latter assumption, I missed the necessity of communication that may precipitate or activate a compassionate response and was enraged that it was even required. This is an issue I will be struggling with for a while. It stills seems too illogical to me to remain unaddressed.
Because my mind viewed this situation from my own set of logic, I missed the many nuances of social interaction that people use to decide whether or not to help a person in need. I had three scripts for how to ask for help. I’ve used “scripts” for most of my life without realizing why I use them or how limiting they can be in trying to address larger issues. So my scripts for asking for help included accessing the police, the social service arm of government and the church. These are scripts I thought society had in place for how a person in need asks for help when they do not have family capable of providing it.
When I did not actually receive help from these sources, I truly did not know what the next step should be or who I was supposed to ask for that direction. That is it, in a nutshell. The police ignore or harass homeless people. The church judges us, calls us sinners and lumps every homeless person into the “made bad life choices because they couldn’t resist the temptation of the devil” category. The government was completely ignorant in providing the basic facts and concrete steps to access resources. As a person with ASD, I needed concrete, written instructions to access those resources not a one-page handout with 15 other numbers and agencies to call (when I didn’t even have a phone or directions on how to get a phone with no money).
I have continued to be very frightened that this situation will happen again and the horror that if it does, I may not survive it next time. I did not recognize that the reason I was unable to piece out the logic of how to ask for help was due to sensory overload. When I am not overloaded, I have a fairly logical brain that can research answers to questions I have. I was homeless in Boulder, Colorado for almost 2 months because we could not find where I had parked the car and no one believed us. I had no script for that.
When you are homeless with ASD, the critical necessity of a safe space to tune out the constant barrage of sensory information is impossible to find. For an ASD person this can cause and lead to a wide variety of additional problems. Without a place to unplug from social exhaustion and sensory overload, your higher reasoning and critical processing becomes even more hindered.
It is more than a need for peace, calm and quiet, it can mean the difference between being able to talk at all, to communicate your desperate situation, or not. Sensory overload can lead to temporary mutism (which is true in my case), outbursts, rage or other socially unacceptable reactions that lead to problems with law enforcement and additionally have the potential for a misunderstanding or misdiagnosis of mental health crisis and severity. These are a huge problem for ASD individuals in general, but much more so when you have no place to unplug and self-soothe privately.
In reviewing my two years of experience up close and personal with homelessness, I am astonished at how many of those comrades I loved and still love dearly were most likely ASD individuals. I have noticed, retrospectively, that I am overwhelmingly drawn to other ASD people. They tend to not trigger my sensory over-reactions. I find the monotone voice and limited facial expressions a welcome respite from the intensity NT’s communicate with. The sad reality is that most of them are still out there. Sleeping on concrete or dirt and hiding from a social world that does not make sense.
As I continue to embark on this new landscape and the many potentials that have now opened up for me, I plan to focus my activism and advocacy for this largely unaddressed segment of the homeless population. I hope to provide an awareness and understanding to prepare parents and friends of autistic individuals for the difficulties that may be an overwhelming challenge regarding housing and homelessness. I hope to contribute to the public becoming educated on the importance of a proactive approach to helping disabled individuals remain housed.
In the broader scope, it would behoove us as a society to address this community with more wide-reaching and inclusive employment opportunities to prevent the poverty that leads to homelessness in the first place. That able-bodied looking homeless guy or gal you just yelled “get a job” to, may not have the skill set necessary to navigate a successful interview or the networking know-how to patent and sell his or her brilliant idea. They are often, however, absolutely willing to be a productive member of society when the appropriate and necessary support is in place.
Please feel free to share your insights, comments or questions below.
Check out my WEBSITE and consider purchasing a print or poster of my art so I can remain “housed up”…