Tag: discrimination

A Life Expectancy of 54??

Content Warning: ableism, statistics on suicide and autism, mention of trauma, disability, bullying, gaslighting, oppression

DISCLAIMER: I am not an autism expert. These are my opinions based on my research and lived experiences. Take from it what you will. This is a post about ableism. However, I do not intend this post to be definitive of all of the ways ableism impacts autistic lives. I am still learning, uncovering the layers of my own experience and listening deeply to the experience of other autistic people. This post is reflective of that learning. It should also be said that autistic people with higher support needs and comorbid conditions are likely to be hardest hit by the dehumanizing effects of ableism and in ways other than described in this post. Theirs and other autistic peoples’ experiences of ableism are valid. There is also the matter of intersectionality.  Not everyone experiencing oppression will experience it in the same way. [Intersectionality takes into account that a person might be experiencing discrimination from more than one system of oppression at the same time depending on their particular identity/ies. The more marginalized an autistic person’s identity is, (either by race, sexual or gender identity/expression, class, religion, etc.), the more likely it is that they will experience discrimination from multiple systems of oppression (in addition to ableism)]. With this in mind, this blogpost is an attempt to speak about ableism and the ways it shows up in autistic people’s lives – or at least in my life. 

Recently on Instagram, @neurodivergentactivist made the following post, “People need to stop perpetuating the idea that ableism is not that serious. It has a real impact on disabled people’s lives and rights. It is important to talk about, as other forms of oppression are.” … “It’s disappointing that ableism is rarely discussed outside of the disability community. And when it is, people often try to downplay it.”  https://www.instagram.com/p/CJmDIhjMrDK/?igshid=1d4ce0kfpnt0p

ABLEISM:

Wikipedia defines ableism as: “discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled… In ableist societies, disabled people are considered less valuable, or they are even seen as expendable…“

WHAT CAN BE DONE?

I’m going to start with what can be done. At the heart of any oppression is implicit bias – the bias invisible to us. Implicit bias is overcome with awareness – by listening to and believing the lived experiences of autistic people. With awareness (and the compassion it inevitably builds), implicit bias can be overwritten with new information. Information that allows autistic people to be accepted as they are. I hope by the end of this post, some understanding and empathy will have been achieved.

Disabled people deserve to be seen as fully human for many reasons, but the biggest is this: If we live long enough, all of us will be disabled eventually. How do you want to be treated when you get there??

I hope you will join me in helping dismantle ableism as a system of oppression. Perhaps this post will build some awareness or start a dialogue or help someone not feel quite as alone. 

WHAT IS ABLEISM?

It is incredibly difficult to talk about and point at your own oppression from inside it. Oppression is often crystal clear to those experiencing it, but invisible to others. Even those who would be allies.

A good place to start is to tell you that the life expectancy of an autistic person is just 54 years.

A series of studies done spanning the last 25 years show that there is a more than 20 year gap in the life expectancy of an autistic person compared with that of the average population. This holds true across the spectrum regardless of “functioning labels”. The causes are systemic – 1) a more than 9 times higher than average suicide rate due to the constant rejection, harrassment and exclusion faced by autistic people, 2) systemic discrimination within the medical system combined with higher risks for disease, and 3) systemic violence at the hands of law enforcement. (See sources below)

This is ableism and it is killing autistic people. 

In addition, there is a nearly 80% unemployment rate. The majority of these unemployed are not from a population incapable of work but of those being denied employment because of social exclusion and isolation. This social isolation also means that less than 10% of autistic people marry. 

Underpinning ableism is stigma, the deep misunderstanding of what autism is, and a dominant culture that requires autistic people to conform to neurotypical standards regardless of the harm inflicted. 

One way to describe this is to compare autistic people to the proverbial square peg being forced into the round hole of the unforgiving neurotypical standard. Damage is caused the more this is forced onto the autistic person.

It’s painful to think about how aversion therapies and having autistic children ingest bleach is seen as preferable to accepting autistic traits. How pushing autistic people to act neurotypical until they surpass their body’s capabilities and burnout or become too depressed to continue (or both) is commonplace. Or, after constant isolation, bullying, exclusion, harassment, they become hopeless and commit suicide. 

SOME WAYS ABLEISM PRESENTS FOR AUTISTIC PEOPLE: 

HARMFUL MESSAGES

Autistic people face a nearly constant barrage of messages shaming their autistic traits and telling them that the answer is to just act more neurotypical – no matter the personal cost.

This is not a viable solution, though. The lived experiences of autistic people show the poor mental health outcomes of such a strategy. 

MISUNDERSTANDINGS AND MISJUDGEMENTS

Misunderstandings and misjudgments are commonplace as autistic people do not present, respond or react as expected. Autistic behavior causes the “uncanny valley” response triggering unconscious repulsion.

The “uncanny valley” is a term coined by the robotics field to describe the irrational repulsion and hatred people respond with towards robots which appear too human. Some within the autistic community have adopted the term to describe the irrational response often aimed at autistic people. 

This response of uncanniness and repulsion makes it difficult for autistic people to be seen as sympathetic or needing help and compassion even though we are some of the most at risk within the Rejection is so common to the autistic lived experience that it is difficult community.

TRAUMA

Trauma is so common within the autistic experience that there is no psychiatric model for an autistic person in good mental health. 

In general, the autistic person’s system is more susceptible to stress, more easily traumatized, often more sensitive to sensory input and pain (although hypo-sensitive is equally valid), and takes longer to recover than a neurotypical person. When you combine this with the continual effects of living with the impact of ableism, the results can be devastating.

MASKING

In order to survive in a hostile world many autistic people, including me, have adopted a dangerous survival strategy called masking. Masking includes hiding stims (the self stimulatory behaviors which help regulate the autistic nervous system), mimicking neurotypical social behaviors and eye contact, hiding painful or uncomfortable sensory input, hiding confusion and distress. For those capable of doing so, masking can mean access to employment, housing, and even community and friendships. But, it comes at a great cost as doing so means deeply denying their true self and hiding all their struggles. This is exhausting and ultimately unsustainable as it leads to burnout and an impact on the autistic person’s mental health, sense of self and self confidence. (It’s important to note that not all autistic people are capable of masking or hiding their autistic traits).

UNINTENTIONAL GASLIGHTING

Unintentional gaslighting is a daily part of the autistic reality. This is the well meaning advice and straight up judgments of the neurotypical gaze. The “why didn’t you just’s. The “you should just try harder’s. The rewriting of the autistic person’s every reality, action and thought based on neurotypical norms. This gaslighting is so pernicious and pervasive that it leads to constantly questioning one’s own mind, reality and sense of worth and has a deep impact on many autistic people’s mental health. A common side affect of this gaslighting is alexithymia, a condition involving difficulty identifying and processing emotions. When one has been told their emotions are invalid or inappropriate their entire life, it creates confusion and difficulty identifying how one feels about things. This can have a deep impact on relationships and sense of self.

NOT BEING BELIEVED

Not being believed is central to the autistic lived experience. It’s hard to find words to describe the impact of this. It causes loneliness and isolation for sure and makes asking for help and support or pointing at problems which directly involve the autistic person an act of risking emotional harm or rejection. 

INFANTILIZATION

Infantilization is the speaking/acting for and assuming less of the autistic person. It does not ask or listen to their lived experience or allow them to speak for themselves. Ultimately, infantilization is a weapon of silencing. It should also be pointed out that infantilization has been used against many oppressed groups in the past including women, minorities, queer and young people, and the elderly. Infantilization ultimately means erasure and silencing of autistic voices which cannot stand. 

THE INTENTIONALLY MALICIOUS

This is the bully, the abuser, the manipulator. They can be subtle or aggressive, but always toxic and corrosive. The intentionally malicious are especially harmful in a population who often cannot ascertain people’s intentions. The autistic person is easily separated from the group and singled out for bullying and mistreatment. And, because they are less likely to be believed, getting help once this happens can be difficult. 

All of the above are examples of ableism. And, it is unbearable as all oppressions are.

Pointing at ableism in this way has done nothing to communicate the devastating effects of it. I have lost living situations, jobs, had to leave school, lost relationships, friendships and more due to these ableist patterns. I have had any number of bizarre social experiences marked by a kind of cruelty I will never understand. I do not know how to describe the fear curled in my belly because I cannot read other’s intentions. Nor can I describe the hours of my life I have spent worried that I may fail or have failed at some social interaction. Or the way I must practice carefully what I need to say if I have to share something difficult even with my most trusted and beloved.

Then there are the everyday indignities of not being believed in small and large ways. The being misjudged and misunderstood (which erodes my relationships). The living in a world not made with my neurology or my extra sensitive sensory system in mind. These take a toll over time and leave a deep mark on the psyche and spirit.

I am one of the lucky ones. My mental health has suffered, but remains remarkably intact. I have a family who love and accept me. I have a small handful of friends who have been supportive through the discovery and diagnosis of my autism. I know I am blessed compared to many neurodivergent people.

And, still my life has been marked with an isolation and loneliness that is hard to describe to the neurotypical. 

And, I have seen the dark side of human behavior – not just in the ways it isolates, excludes and others, but in the ways it hates and hurts. It baffles me.

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Note: * microaggressions are defined as: brief, commonplace, daily indignities that communicate bigotry, slights or insults.

Examples of the kind of microaggressions faced by autistic people include: 

  • the constant misjudgments, misunderstandings and not being believed common to the autistic experience
  • small or ongoing acts of isolation, exclusion, rejection,
  • speaking for/assuming the experience of an autistic person rather than listening to their experience
  • infantilizing autistic people or treating them in any way less than
  • putting the autistic person in a situation which they would have to risk emotional harm to navigate, 
  • putting the autistic person in situations they are incapable of navigating (such as complex social situations), 
  • misreading autistic stress and autistic anxiety as behavioral issues
  • misreading autistic shutdowns and meltdowns and emotional sensitivity (these are signs of extreme duress but are often interpreted as something else), 
  • etc..

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RESOURCES: 

Below are links to information regarding the studies on autism life expectancy:

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2076

https://journals.sagepub.com/doi/10.1177/1362361319827412

This ia a video explaining the findings from one of my favorite autistic YouTubers:

Cards are Stacked

Content Warning: this post contains a bit of a rant about the extreme male brain theory of autism and a bit about the gender disparity and challenges of seeking a diagnosis as an adult, born female person in the US.

Disclaimer: I am not an autism expert. The information presented here is based on my own research and independent study. These are my opinions and not meant as authoritative on the subject. Take from it what you will….

To start, I understand that the field of psychology is not a monolith. There are many schools of thought with many of those practicing within it doing wonderful work which is helping many people. Having said that, there are parts of the field that are problematic. One area is the ongoing pathologizing of and discrimination against women and minorities. This is exemplified in the wide acceptance within the field of the extreme male brain theory of autism.

The extreme male brain theory of autism was developed by Simon Baron-Cohen in the 1990’s which theorizes that there is a fundamental difference between male and female brains to explain the disparity in diagnostic rates in autism between males and females at that time.

Speaking frankly, this theory is severely flawed. It ignored known medical science in order to justify a highly gender biased assumption: More males were being diagnosed with autism than females and nonbinary folk. Baron-Cohen theorized that this must mean there was a basic difference in female brains that kept them from being autistic. (Anyone else see a basic flaw with this?)

Sadly, wide acceptance of the extreme male brain theory has meant is that research into how autism presents for women, girls, nonbinary people and atypical males has been slow coming. And, changes to the diagnostic and testing tools has been even slower. There is a very real cost here paid in human suffering. Uncounted numbers have had to grow up and into adulthood without support or understanding themselves and often facing bias and misdiagnosis within the mental health field.

It has taken longer than it should, but growing evidence that there are other presentations of autism has finally overwhelmed the extreme male brain’s hold and allowed for a shift in understanding of the subtler presentations of autism more often experienced in women, girls, non-binary people and atypically presenting males. Although, the theory has been debunked in recent years by this new understanding and rising numbers of diagnoses in the corresponding populations, since extreme male brain had been accepted wisdom for more than 20 years, the theory has been slow to die. :'(

To this day, psychological research is in effect ignoring autistic adults and their experiences instead focusing the bulk of the research in the field on children with autism. Any number of myths and misunderstanding about the autistic experience have been perpetuated as a result. This is a real point of contention for the adult autistic community. By excluding adult autistic voices and only discussing autism amongst those within the field, a very skewed picture emerged. One that allowed theories like extreme male brain to thrive. (To put this into perspective, imagine this paragraph with Black people, Indigenous people or LGBTQ+ people in it instead of autistic people and this injustice may become even clearer.)

The DSM5, the official diagnostic manual for the US, allows psychologists to take into account the more subtle presentation of autism; however, little to none of the gender biased testing and diagnostic tools have been renovated. Instead, it is left up to individual psychologists to determine if there is enough evidence to diagnose based on the self reporting of a population whose main difficulty is a communication deficit. This just seems arbitrary and extremely unfair.  

And, this does not even begin to take into account issues such as cost (which, unless you are privileged enough to be covered by insurance or other programs, is astronomical), access, and social disparities such as implicit bias for minorities and LGBTQ+ (especially Trans) folx, etc...

So, the cards are stacked. For all with an atypical presentation of autism when seeking diagnosis. It cannot be stated enough how important it is to find the right diagnostician. This is easier said than done and often comes down to luck more than anything.

I got lucky. I found a practitioner who recognized my autism readily. I recognize this for the privilege that it is (and that it is a privilege that I was able to access diagnosis at all).

I will be real and share that I was scared to seek diagnosis. It took a great deal of fortitude especially since I have faced misdiagnosis within the mental health field in the past.

It was a time of great uncertainty. I wrote this post in part as a way to cope with that uncertainty. In the end, I chose to embrace that identity and diagnosis are not the same. I decided that since the cards were stacked, I would embrace my identity as an autistic person regardless of the outcome.

Within the next 5 years there is likely to be a big shift in the way autism is assessed in adults. Especially for the atypical presentation more likely in born female people. I was ready to wait and seek diagnosis again later if I had to. Luckily, it was not necessary in my case.

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Note: It must also be said that, at different points in history, the field of psychology has pathologized the Black, Indigenous and LGBTQ+ communities to justify their marginalization. As example, homosexuality was a mental illness warranting institutionalization until the 1970’s, it was considered mental illness for slaves to want to escape from the brutality of slavery and indigenous peoples were considered mentally ill for wanting to remain close to the land rather than “progressing” into industrialized society.

For any interested in learing more about the extreme male brain theory, here is a paper criticizing it in much greater detail. Read it at your leisure if so inclined:

A Critique of the Extreme-Male-Brain Theory of Autism