Tag: autism

Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment. This was reinforced through behavioral therapy and the school system

What the people who helped me didn’t realize at the time were the future implications of my mental health as an autistic person. This was because their focus was on making me as self-sufficient and socially adjusted as possible, and by the time I reached adulthood nobody ever considered that what they were doing could unintentionally affect my self-identity and self esteem. But all my energy spent 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 in living as an autistic person.

My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. 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 autistic people’s 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 helping to create a world where autistic people don’t have to camouflage themselves as neurotypical. Acceptance also means giving supports and accommodations to autistic people of all abilities and support levels when it’s asked for and needed. If the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems autistic people have can, in many cases, be lessened.

Source: THINKING PERSON’S GUIDE TO AUTISM: Mental Health and Autism: Why Acceptance Matters

I updated “I’m Autistic. Here’s what I’d like you to know.” with a selection from “Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America” to expand the bullet point on stress and stress cases and bring in a critical psychiatry voice. A longer quote from this piece is included in “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life”.

People who enter services are frequently society’s most vulnerable–people who have experienced extensive trauma, adversity, abuse, and oppression throughout their lives. At the same time, I struggle with the word “trauma” because it signifies some huge, overt event that needs to pass some arbitrary line of “bad enough” to count. I prefer the terms “stress” and “adversity.” … Our brains and bodies don’t know the difference between “trauma” and “adversity”–a stressed fight/flight state is the same regardless of what words you use to describe the external environment. I’m tired of people saying “nothing bad ever happened to me” because they did not experience “trauma.” People suffer, and when they do, it’s for a reason.

Source: Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America

This doesn’t fit the flow of the bullet point as well as I’d like. Connective editing TBD.

I might work this quote/theme into Autistic Burnout: The Cost of Masking and Passing.

I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with selections from “Valuing differences: Neurodiversity in the classroom  – kappanonline.org” and “What CAN be misunderstood WILL be misunderstood | Autistic Collaboration”.

Sometimes it takes another person with your specific disability label, not another neurotypical teacher or peer, to help the world understand your experience. One of the first books I read about autism was Donna Williams’s memoir Nobody Nowhere: The Extraordinary Autobiography of an Autistic (Jessica Kingsley Publishers, 1998). One of her observations has always struck me as particularly apt: “Communication via objects was safe,” Williams says. For me, computers are objects that can be a bridge to interpersonal connection and growth. Those are things we all want, regardless of our differences.

Source: Valuing differences: Neurodiversity in the classroom  – kappanonline.org

I have developed a strong preference for written communication, which is a very effective strategy for avoiding the need for linguistic autistic masking.

Source: What CAN be misunderstood WILL be misunderstood | Autistic Collaboration

This finding highlights a previously unknown strength in empathy and emotion processing in adults with ASD, which may have been masked in previous research that has typically relied on explicit, response-based measures to record emotional inferences, which are likely to be susceptible to demand characteristics and response biases. This study therefore highlights the value of employing implicit measures that provide insights on peoples’ immediate responses to emotional content without disrupting ongoing processing.

Source: PsyArXiv Preprints | Intact counterfactual emotion processing in autism spectrum disorder: Evidence from eye-tracking

A strength not unknown to us.

Had a nice chat this afternoon with Boston Children’s Hospital’s inpatient neuroscience folks on autism, the social model of disability, identity first language, and designing for pluralism. The best hospital onboarding I’ve experienced.

I updated “Autistic Burnout: The Cost of Masking and Passing” with selections from “Ann’s Autism Blog: What do I mean by “We’re OK being Autistic” ? #TakeTheMaskOff”.

I’m really autistic now. But thanks to a lifetime of being told that I must disguise the pain, at all costs, I learned to mask. To put on a false front, be the person that others wanted me to be. Smile when in pain. Be really nice when in pain. Cope when in pain. Not Be Me. Never, ever be me. Never. If I was the real me, I would experience hatred from others, more isolation, more loneliness, more condemnation, more false accusation (because of ignorance of autistic culture and communication).

And, do you know what happened? It broke me.

I look around at my fantastic autistic family, friends, colleagues. The ones who have done the best masking, the best disguising? Broken. Or sitting amongst a trail of debris from broken relationships, broken job situations, broken health. I look at the research showing the suicide rates, the average age of death (54). Not from some genetic malfunction. From relentless pressure, relentless humiliation and pain. Anyone would die early from that. We need less focus on pleasing shareholders with news about ‘genetic cures’, and more listening to autistic people. More realising that actually we don’t need to be in that level of pain.

There is a myth that if we disguise being autistic, it’ll all go away. The future will be lovely. All will be well. A myth that autism was some sort of behavioural choice by us to annoy people around us. Rhubarb, to use an apt word.

It’s a myth. There is no perfect future from having to pretend we’re not ourselves. Only the extra hell of having to mask each day. Having to pretend that we are not autistic, and still endure the ridiculous expectations, sensory hell and social overload that non-autistic people place upon us.

So…

I’m OK being autistic.

Source: Ann’s Autism Blog: What do I mean by “We’re OK being Autistic” ? #TakeTheMaskOff

I updated “The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults” with selections from “The belief in a theory of mind is a disability — Semiotic Spectrumite”.

And this is where the neurotypical belief in theory of mind becomes a liability. Not just a liability – a disability.

Because not only are neurotypicals just as mind-blind to autistics as autistics are to neurotypicals, this self-centered belief in theory of mind makes it impossible to mutually negotiate an understanding of how perceptions might differ among individuals in order to arrive at a pragmatic representation that accounts for significant differences in the experiences of various individuals. It bars any discussion of opening up a space for autistics to participate in social communication by clarifying and mapping the ways in which their perceptions differ. Rather than recognize that the success rate of the neurotypical divining rod is based on mere statistical likelihood that the thoughts and feelings of neurotypicals will correlate, they declare it an ineffable gift, and use it to valorize their own abilities and pathologize those of autistics.

A belief in theory of mind makes it unnecessary for neurotypicals to engage in real perspective-taking, since they are able, instead, to fall back on projection. Differences that they discover in autistic thinking are dismissed as pathology, not as a failure in the neurotypical’s supposed skill in theory of mind or perspective-taking.

Ironically, constantly confronted with the differences in their own thinking and that of those around them, and needing to function in a world dominated by a different neurotype, autistics are engaged in learning genuine perspective-taking from the cradle on. The perceived failure in that perspective-taking is thus based on the fact that autistics do not rely on and cannot rely on neurological similarities to crib understanding by projecting their own thoughts and feelings onto others.

As such, autistics talk about themselves rather than others, a feature of autistic narrative that has been pathologized as “typically autistic” by researchers like Ute Frith. The fact that much of autistic writing is dedicated to deconstructing neurotypical fallacies about autistic thinking set in the world when they spoke about (or for) us, and to explaining differences in autistic thinking in order to broker mutual understanding remains unremarked upon, as it would have required adequate perspective-taking to have identified this.

Thus, if we were to summarize the effect of neurotypicals sitting in wells that are structured in much the same way, delimited in much the same way, oriented in the same general direction and located in the same geographic location, manifested as an unassailable belief in their natural gift of theory of mind, we would have to conclude that this belief in theory of mind severely impairs neurotypicals’ ability to perceive that there is sky or even the great sea outside the narrow limits of their purview. It also necessarily impacts their cognitive empathy vis-à-vis autistics and, sadly, their affective empathy as well.

This deficit in neurotypicals needs to be remediated if autistics are to have a chance to participate as equals, because the truth is, in this regard, autistics suffer and are excluded from social communication not because of our own disability, but because of neurotypical disability.

Source: The belief in a theory of mind is a disability — Semiotic Spectrumite