One of the cruelest tricks our culture plays on autistic people is that it makes us strangers to ourselves. We grow up knowing we’re different, but that difference is defined for us in terms of an absence of neurotypicality, not as the presence of another equally valid way of being. We wind up internalizing a lot of hateful, damaging, and inaccurate things about ourselves, and that makes it harder to know who we really are or what we really can and cannot do. If no one ever acknowledges that we have a voice, we can forget how to use it. We might even decide not to.
Tag: autism
Why are there greater mental health stresses on autistic people from gender-minority groups? To quote from the research paper,
“The increased rates of mental health problems in these minority populations are often a consequence of the stigma and marginalisation attached to living outside mainstream sociocultural norms (Meyer 2003). This stigma can lead to what Meyer (2003) refers to as ‘minority stress’. This stress could come from external adverse events, which among other forms of victimization could include verbal abuse, acts of violence, sexual assault by a known or unknown person, reduced opportunities for employment and medical care, and harassment from persons in positions of authority (Sandfort et al. 2007).”
Source: Ann’s Autism Blog: Autism, Transgender and Avoiding Tragedy
“Because Kara’s self-injury is a behavioral issue as opposed to neurological, it’s THC, not CBD, that stabilizes her mood.”
Source: Texas Rep. Pete Sessions’ War on Medical Marijuana
I get the distinction they’re trying to draw, but I cringe at seeing autistic needs framed as and reduced to a “behavioral issue”. Stop interpreting our needs as “behavior”. Behaviorism is bad framing. The behavioral vs. neurological and THC vs. CBD binaries in that sentence are too…binary.
Cannabis helps some of us endure overwhelming environments and the consequences of compliance, behaviorism, and burnout.
I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with a selection from “The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.”.
ANI launched its online list, ANI-L, in 1994. Like a specialized ecological niche, ANI-L had acted as an incubator for Autistic culture, accelerating its evolution. In 1996, a computer programmer in the Netherlands named Martijn Dekker set up a list called Independent Living on the Autism Spectrum, or InLv. People with dyslexia, ADHD, dyscalculia, and a myriad of other conditions (christened “cousins” in the early days of ANI) were also welcome to join the list. InLv was another nutrient-rich tide pool that accelerated the evolution of autistic culture. The collective ethos of InLv, said writer and list member Harvey Blume in the _New York Times _in 1997, was “neurological pluralism.” He was the first mainstream journalist to pick up on the significance of online communities for people with neurological differences. “The impact of the Internet on autistics,” Blume predicted, “may one day be compared in magnitude to the spread of sign language among the deaf.”
Source: The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.
I believe all persons with Autism need the opportunity to become friends with other Autistic people. Without this contact we feel alien to this world. We feel lonely. Feeling like an alien is a slow death. It’s sadness, self-hate, it’s continuously striving to be someone we’re not. It’s waking up each day and functioning in falsehood (French, 1993).
I updated “Interaction Badges: Opportunity but Not Pressure” with a selection from “History of ANI” as featured in “Loud Hands: Autistic People, Speaking”.
“Opportunity but not pressure” is a core principle for all Autreat activities: attendance at presentations, informal discussions that are held in the evenings, swimming and other recreational activities, socializing, meals (people who prefer to make their own meal arrangements are able to register for Autreat without paying for Autreat meals), on-site lodging (people who prefer to stay at an off-site hotel can register for Autreat at a commuter rate)—all participation is purely voluntary.
Freedom from pressures and expectations
For some autistic people attending Autreat, the sudden absence of pressures and expectations to behave in certain ways can be quite disorienting at first. NT people are often disoriented as well, and may experience culture shock. One NT attendee described feeling unsure of how to behave and how to relate to people, confused about how to interpret other people’s behavior, and anxious that he might offend people without realizing it (personal communication). In other words, he was able to experience at Autreat some of the same social confusion and discomfort that autistic people frequently experience in NT society. While this can be somewhat disturbing, a number of NT people have reported that it was a valuable experience that helped them to better understand what autistic people go through on a daily basis.
The absence of any expectation or pressure to socialize, and the knowledge that they’re free to withdraw at any time, seem to free many autistic people to want to socialize.”
Source: History of ANI
Featured in: Loud Hands: Autistic People, Speaking
“I learned more about my son by talking to those people for an hour than I learned talking to everyone else,” she says. “They were more compassionate, more accurate, and more understanding.”
I updated “Bring the backchannel forward. Written communication is the great social equalizer.” and “Wanted: hospitals and doctors’ offices that…” with selections from “Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle | CommonSpace”.
When AMASE conducted a survey about the mental health of autistic people around Scotland, we found that many had been excluded by such simple things as practices insisting on telephone contact
Source: Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle | CommonSpace
I updated “Wanted: psychologists, psychiatrists, neuropsychiatrists, and neurologists who…” with selections from “SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues”.
Both formal research, and autistic people’s own reports, clearly show that autistic health concerns-including mental health issues-are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions.
It is only through participatory autism research that we have become aware of matters like the crisis-level rates of suicide and suicidal ideation in autistic people, while studies of commonly self-reported but poorly studied and understood co-occurring conditions like hypermobility or Ehlers-Danlos syndrome are only now emerging. If we are going to properly support autistic people of all abilities to achieve best possible health outcomes, our health care initiatives need autistic guidance.
I would like to see more of this autistic-informed policy integrated into autism education for medical professionals, for matters like accommodations during patient-professional interactions. We need more medical personnel to understand why autistic people-even those technically capable of holding a conversation-can have a debilitating fear of needles, may have difficulty with sensory-intensive procedures like MRIs or EEGs, may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. We must develop strategies for ensuring those autistic individuals are accommodated, so they can receive the care they deserve without being written off as “difficult.”
I would like to see more medical professional awareness about the sensory needs of autistic people both in general, and in medical environments. When my son was recently in the ER at Stanford University, he was given access to a lovely sensory “Imagination Station,” and in addition the flickering fluorescent lights in his room were turned off. Many autistic adults who heard about my son’s experience reported that they too would like access to these kinds of sensory accommodations, but such options, even when available, are usually reserved for children.
I would like to see more outreach to medical schools and other training programs about the need for more neurologists, behavioral psychiatrists, developmental pediatricians, and registered dietitians both in general, and who understand autism specifically. These scarcity of these specialists makes accessing health care even more difficult for autistic kids and adults.
I would like to see investment in “health passports,” like those developed by the UK’s National Autistic Society, to improve autistic people’s hospital and medical experiences. I would like to see encouragement to adopt and support models like the autism and healthcare toolkits and resources developed byAASPIREandUCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, and useful best practices for patients with developmental disabilities.
I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. Autistic people must to be able to trust the professionals taking care of them if they are to tolerate anxiety-provoking medical environments-yet too often autistic people are not even addressed during in-person conversations about their own health, or they are spoken in a manner more appropriate for speaking to A Very Good Dog (as happened to my son while getting his flu shot just this week). In worst-case scenarios, dismissive attitudes can lead to tragedy, as with the recent death of 18-year-old Oliver McGowan. These attitudes must change, because my son’s life and those of his autistic community members are valuable, and should be treated that way.
Finally, I would like to see recognition that health care access gaps are even more pronounced for autistic kids and adults who aren’t male, autistic people of low socioeconomic status, and autistic people of color, due to well-documented barriers including accessing formal diagnosis, and thus receiving proper care and accommodations. We need investment in easy-read and multilingual autism and health care information. Ideally, we also need investment in “community ambassadors” who can translate and/or advocate for people who may have multiple barriers to resources, and thus to effective self- or family advocacy.
Source: SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues
I updated “Neurodiversity in the Classroom” with selections from “Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?”.
The picture shows a school classroom as I see it, as an autistic person. A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students. Deafening noise. The stench of different smells. The confusion of many voices, including some heard through walls from neighbouring halls and classes. School uniform that feels like barbed wire on my skin.
In the chaos, a different voice which I have to try to listen to. It’s so hard. My brain doesn’t want to tune the rest of the noise out. Apparently I’ve been asked something, but I miss it. The voice gets more strident, the class turns to look at me. The intense stares overwhelm me. The person next to me jostles me and it feels like an electric shock on my skin. Only six more hours of hell to go…. only six….
Some of our autistic pupils simply cannot do this alone, without ‘time out’ to recover from the pain and exhaustion during the school day. Not for hour after hour of puzzling painful chaos.
We’ve turned classrooms into a hell for autism. Fluorescent lighting. Endless noise. Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure. Autistic children mostly could cope in the quieter schools of decades ago. Not a hope now.
We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.
Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children. Punishing them for responding to pain is not something any of us need to do.
What schools need to do is to understand autism. In understanding it, we can help to stop putting the children in pain and exhaustion. It’s actually quite easy. And quite cheap.
Source: Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?
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