Multitudes-A Way Too Long List Of Things Broken And Taken By My Past Caregivers

Posting this mainly for my records. Because the two people, a brother and sister, whom i let into my home and trusted to care for me from July 7, 2018 through June 21, 2019, took so much from me that i am only now way too slooooooowly trying to replace.
Things The Brother Broke 
*A shiny black and silver chrome butterfly candle wax scent burner i had in my kitchen that i really enjoyed because—butterflies—the nice scents that filled my house—and the way it lit up my kitchen counter where it sat.
*A large one quart sized glass pitcher with Cobalt Blue trim that i used to keep all of my rocks in.
*One large office-sized stapler
*One purple electronic rechargeable Swifferjet mop
*A green Hoover upright vacuum cleaner with attachments, i had bought in 2012, with money from the sale of my car.
*My Klipsche computer speakers and subwoofer that i had on my desktop computer, I really enjoyed the way they sounded. He replaced those speakers with speakers that are hard to adjust the volume on, and they are also quite shitty-sounding.
Things The Brother AND Sister Both Took/Stole/Misplaced
This is a quite long list, folks, so grab a cup or glass of your favorite beverage, iced, or warm, and relax and read on, please.
*A five step step ladder i had also purchased in 2012 with the money i had from the sale of my car.
*Two large green travel duffle bags i had purchased from Amazon
*A large black canvas suitcase on wheels with handle that a friend bought for me
*One small zipper travel carrying case big enough to carry all makeup, cosmetics, medications, vitamins, etc., in case i travel
*A $25 dollar complete manicure-pedicure case i also bought on Amazon—i did finally replace that this month.
*Five adult coloring books that a friend and my sister both bought for me
*Two decorative plastic bowls i bought to organize and keep my coinage change in. One was teal blue, the other white with teal blue fish on it.
*One of my heavy duty beige-colored folding chairs is still missing.
*One twelve piece screwdriver set i also bought on Amazon—i also just replaced that this month.
*A 17″ HP computer monitor
*One 54 set of multi-colored gel pens for coloring
*All of my fine tip and wide tip Crayola markers for drawing, art.
*Most of my multi-colored Sharpies
*All of my highlighter pens
*All of my sketch pads i would do my drawing and art on
*All of my multi-colored file folders
*Two pairs of my good scissors
*Two rolls of tape, one duct tape, the other packaging tape

*One of two of my small trash cans-it is hot purplish pink
*Four tubes of Remedy Olovamine Anti-Fungal Cream
*One seven ounce tube of Silva-Sorb wound care ointment
*Ativan—my Ativan pills were always counting as less pills in the bottle than my refill amount. The last time i got a refill it was for 90 pills. 90 pills in a refill—yet when i counted them a few days later, i ended up with 86 pills. I had not taken any of my Ativan at that time, and was using my CBD oil instead to control my anxiety. As of Brother’s last day working for me, i had only three Ativan pills left, and i had not taken but maybe ten pills all told out of the 90 pill refill for my use. Just 3 pills are now left in a bottle that was supposed to at least have 80 left by now, because, that was all of the pills i personally took from that bottle.
*Candy–several pieces missing from bags of—
–three red bags of Lindor Truffle Chocolates,
–one quarter of a jumbo bag of Mars Minis (includes miniature snack sized 3 Muskateers, Milky Way, Milky Way Midnights, Twix, and Snickers),
–most of the mint and caramel chocolate squares also missing from a bag of Ghiradelli chocolates that my friend and past caregiver, Connie Carter gave to me for my birthday this year
*Other candy from my candy dish in living room
*Other candy from my candy drawers
—peanut butter M&M’s
—Reeses white chocolate peanut butter cups
—Reeses regular chocolate peanut butter cups
—Handfuls of my assorted hard candy
*Food—i would find my pepperoni pizza Hot Pockets routinely missing
*My red Solo cups
*Cleaner/Air Freshener—i would routinely find my Windex, lemon Lysol cleaner, and Febreze gone, and out in the garage room
*several of my C-cell, AA, AAA batteries,
*several flourescent curly cue light bulbs,
*one of my power failure lightbulb lights that look like a lightbulb and socket
*my canned air that i use to clean out my computer
*electronic wipes
*One soft black knit cap that my mother bought for me
*Two light velour, velvety-textured blankets my mother bought for me. One is a full blanket, and is dark forest green-colored, the other two are lap and shoulder wraps, and are a dark rusty red color.
*8 large bath towels
*10 washcloths
*two kitchen towels
*My birth certificate
*10 copies of my SSI re-evaluation paperwork from 2005 and 2007
*One long wand Swiffer duster
*Two brooms
*Two dustpans
*One 12 pack of soft white crew socks
*One 60-ounce blue Correlle or Pyrex mixing bowl
*Two white plastic coffee mugs
*3 small steak knives
*Several carving and cutting knives
*Several pieces of silverwear, teaspoons, forks, tablespoons, butter knives
*My measuring spoons are also all gone
*Two kettles/pots
*Two cooking skillets
*I used to have a collection of over 55 music CD’s, 55 plus books, and all of those are also gone
*All of the old clothing i used to have is also gone now—several cute tops, and pants that i knew would fit me if i ever were to lose enough weight to fit in them again, so i would not have to purchase new ones
*Four dark blue money pouches
*Two boxes of staples that go with my stapler that he broke, all of my staples are all gone now too.
*3 packs of large manila envelopes
*2 packs of medium sized manila envelopes
*2 boxes of Mead white legal sized self adhesive privacy envelopes
*2 boxes of small Mead white envelopes
*A red ruler, and green ruler, are also gone
*10 large white poster boards
Things They Took That They Did Return
*A small crystal cross
*My desk drawers
*My artwork and art portfolio
*Three of my four heavy duty beige folding chairs
*my white Hoover carry vacuum that belonged to my grandmother, and is over 40 years old
*My green Living Bible
*Some of my colored file folders
*Some of my Sharpies
*The wing that broke off of my angel that is in my bedroom
But the above things that they broke and took from me, are all things that, either i myself worked hard to buy out of my own pocket, things that were given to me by friends, my mom and one of my sisters, and things i already had that i needed to keep on hand—-now i have to work to replace ALL of it. And i doubt i can do so without some sort of a financial miracle.
In Home Care Providers who are tasked to care, but who instead come in and take over a clients’ entire home and even herself—-then use and steal from that person who is sick, vulnerable,  disabled, and on a fixed low income, need to be held strictly accountable, placed into prison, and then made to work to pay that person back for everything they broke and took from that person.
Every single thing that they took and stole from me.
I now need to go apply to get a whole new birth certificate. All of my SSI paperwork is gone now too.
I have canary yellow walls that wake me straight up out of a sound sleep too early in the morning, on bright sunny mornings, because of their brightness.
I was routinely told by that brother and sister that my autism was not real, that my physical mobility limitations were just me being “lazy” and trying to get my way, that i was just being mean and demanding and spoiled. Told that i didn’t appreciate them and all they did for me.
When i was asking them to accomodate my disabilities.
I still have nightmares almost nightly, about this brother and sister, who came into my life, telling me they were going to be the friends and family that i have never had, and always have longed for—then, once i put my trust in them, they turned around and took full on advantage of me, and took FROM me.
While i spent 3 long weeks away from my home, so that he could rip all of my carpets out and refurbish the hardwood floors underneath, and paint my living room walls the nice sift blue or lavender that i requested he paint them—-they were spending much of that time with both brother and sister partying till all hours of the night and morning in my garage room. And painting my walls a color they knew i hated–hate.
Also realizing that they basically took much of my time away from my home to completely comb through all of my personal papers, documents, etc., and take even those from me. To actually use against me!
To realize that that job of taking my carpets out, then refurbishing the hardwood floors underneath, should of only taken at least a week at the MOST for them to do—but it took the brother and sister team an entire three weeks—with me up at his house staying with his mom and his girlfriend, where i was badly uncomfortable—-that was not okay.
The yellow walls in my living room were not okay, and are still not okay.
The constant gaslighting i got from this brother and sister,
the way they were always dismissing my needs and requests,
and dismissing the way that I liked for things to be done for me, IN MY OWN HOME,
the daily promises they would make to pay me back for the stuff and money they took,
then they’d break those promises
the daily making promises that we would go this place and that, then
suddenly the plans would change, and or she would take the car we were to go in
so then we could not go that place or this place
the daily circus of them always being late without letting me know,
their phones shutting off and going straight to voice mail,
the constant worry of are they going to leave me without a way to get to dialysis, a way to eat,  or are they going to leave me stranded at yet another medical or mental health appointment
the daily battles just to be heard and seen, to really be heard and seen by them,
the daily battle to make them see my autism, see and believe my autism, see and believe my physical disabilities
all of my things being moved, and gone, all of my things and plans and routines—always being moved, always taken, always gone, always messed with
my head always being messed with, my head, my emotions, my feels, always being fucking messed with
the constant changing of schedules, the constant upheaval—not to mention the large sums of money they took from me, from my duffle bag, and from me, they asked for it all the time—
—when i would come home with five hundred in my duffle bag, and end up next day with $180 of that because one of them snuck in and took from my wallet while i was sleeping
their unpredictable temperament—one day we would all be okay, the next day, even sometimes the next minute—suddenly i was being yelled at and scolded again
I was often yelled at and scolded by them
i was expected to act and do their idea of normal neurotypical
if i didn’t, i was told about it loudly and with shame inflicted upon me
this has all affected my kidney dialysis, has even affected me being able to go in to get the surgery  that i STILL need to get a permanent kidney dialysis access port placed in one of my arms, so i can finally be free of this awful chest catheter.
I am still reeling greatly from the effects of having the brother and sister as my care providers. I am reeling mentally, emotionally, and financially. My credit cards? Are all still maxxed out. I feel as if i have been placed deep into a dark hole that i will now never be able to climb out of. And this hurts on all levels. And brings me to a depth of DAILY despair that i can still not put words to to fully describe the daily agony and anguish i walk with. Because of the blatant and deliberate intentional cruelty of a brother and sister who kept telling me how much they loved and treasured me.
I have only been able to replace some of the towels they took, and a few other things. But i need so much more still.
This is not okay.
I am going to keep on writing. It’s the only sure thing that i still have of being able to process through all of this garbage i had to live with day in and out for the past year.
One good piece of news is that i do have Connie back in my life now too. She was my caregiver for four years, from March of 2014 to March of 2018, and only quit because she got an excellent job offer that she could not turn down. She came back when the brother suddenly turned on me, leaving me with no way to get my breakfast, and no way to get to dialysis on June 22, 2019.
The caregiver abuse that i have suffered, sadly happens to far too many disabled and elderly disabled people. Serious reform needs to happen so this can finally be stopped.
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Distorting DEEJ: Deconstructing A Misinformed Literature Review



Production photo of David Jame Savarese (Deej) a thin white male with short,
cropped hair and glasses, wearing a light blue polo shirt and beige slacks, seated
 at a table facing his girlfriend who is seated in a power chair back to us, facing him.
  A man holding a camera is standing to their left and caught in the act of filming them.
©DEEJ movie https://www.deejmovie.com/press


"A distinguishing feature of scientific thinking is the search for falsifying as well as confirming evidence. However, many times in the history of science, scientists have resisted new discoveries by selectively interpreting or ignoring unfavorable data." Wikipedia on Confirmation Bias

I understand that professionals who aren't familiar with autism and autistic lived experience may carry biases about non-speaking autistic people. I don't accept it, but I understand it. We're human and all of us have biases. When bias becomes a problem is when academic work begins with the conclusion that non-speaking autistic people must be presumed incompetent. I get seriously disturbed when scientists who know better lay out academic work to support a bias. It is personal to me, and so hurtful that I felt the need to write why.

I am an African American woman. What that means is that I and everyone who shares my race continue to be targets of something called scientific racism. Scientific racism, at its core, is misusing scientific structure and scientific reasoning to support false claims of racial superiority in general and was one way of oppressing Black people in particular—which makes me more alert to this kind of bias when I see it used against other marginalized groups.

I am also very outspoken about the unjust treatment of autistics like my son. Full disclosure, my son is non-speaking and uses an iPad with the appTouchChat HD as his primary communication support, as part of his multi-modal communication system. He does not use FC (Facilitated Communication) or RPM (Rapid Prompting Method). But for anyone who doesn’t know any better and is watching an AAC (Adaptive and Augmentative Communication) user in a documentary, my son and someone who used those communication methods would look similar.

Representation of true non-speakers in the media is usually limited to inspiration trash or objectification to gain funding. That is why it was gratifying to see DEEJ, an award-winning documentary about DJ “Deej” Savarese, an AAC using non-speaking autistic adult with complex support needs. This kind of representation—outside of stereotyping in media for us people of color—also began with movies, television series, and groundbreaking documentaries. There is no acceptance in a society where groups of people are not represented as three-dimensional human beings. I watched DEEJ and came away feeling it had earned its awards.

So when Social psychologist Craig Foster's article, "Deej-a Vu: Documentary revisits facilitated communication pseudoscience" was published in Behavioral Interventions in August of this year, I read the title and flinched. Not looking forward to doing so at all, I acquired and read the review. This is what I learned.

Foster's background is not in the diagnosis, care, or treatment of autism. He does not have a background in speech pathology or Augmentative and Alternative Communication (AAC). Foster's focus seems limited to skepticism and concussion non-disclosure research. I wonder why he chose this topic? He could have simply done his review on the history of Facilitated Communication (FC). Instead, his deliberate targeting of Savarese by compiling any negative literature on FC he could find comes off as a reductive approach to the documentary DEEJ, as well as one that aims to erase the film’s actual message of inclusion and representation.

Perhaps Foster is uninformed about the catastrophic role psychologists have played in the history of autism. From Asperger’s Nazi collaboration to the debacle and destroyed lives of Bruno Bettleheim’s expansion of Kanner’s “refrigerator moms” view of autism, to Ivar Lovaas and his conversion therapy cruelties, psychology has continued to destroy autistic lives. I’d like to say this has changed, but autistic children are still being given electric shock punishments at the Judge Rotenberg Center “for their own good.” With this kind of track record, the task before these professionals should be to regain the trust of their non-speaking autistic clients and their families. But here, Foster singles out a non-speaking autistic and his family to push the regressive idea that we must be skeptical of any non-speaking person's claim to competence.

Foster's review tries to rebrand the DEEJ documentary on inclusion as some sort of infomercial for FC. He claims he was filtering and inserting FC as a topic, so skepticism could be placed in the minds of those evaluating the film. I find this unnecessary. If the viewer doesn't know what FC is, what they would see is someone using pads, laptops, and in some cases, pen and ruled notebook pads as AAC support. When I viewed the film, I simply accepted the equipment as AAC support because the film made no effort to explain otherwise. FC was not the focus of the film, so it was neither emphasized nor discussed.

Foster's review cherry-picked only the scenes from the documentary showing the use of supported typing. He speculated about Deej's intelligence and competence to produce speech through AAC devices without having met, assessed, or researched anything about Deej, including how Deej communicates with support staff when they have not trained as FC facilitators or even how the Dynavox narrations were achieved in the documentary. Instead, Foster uses select scenes to conclude that Deej communicates entirely via FC, therefore, he must be presumed incompetent. There’s no mention of whether Foster followed up with anyone to verify his conjectures about the nature of Deej’s education, interactions with support staff, communication methods, or achievements.

I decided to do what Foster hadn't done. I reached out to the Savarese family. I learned from Deej himself that he has had 52 teachers, 22 professors, 18 school support assistants/facilitators, 15 after-school assistants, 5 speech therapists, 4 occupational therapists, and 6 principals in 2 different school districts over 18 years. To my knowledge, Foster did not interview any of them. Foster commenting on Deej's diagnosis and the scope of his intelligence was a misuse of scientific reasoning.

To prove his point about FC, Foster also ignored scenes that complicated his thesis, like the scenes in which Deej toured Washington D.C. with his cousin. Deej's mother leaves a notepad of scripts with printed words so that the cousins can communicate by having Deej point to responses to any query by his cousin. Meaning Deej toured DC without a facilitator and communicated without FC. When Deej begins his pioneering tenure at Oberlin, he has support staff who are not trained in FC who help him transition. Yet Deej is seen making transitions and participating in activities that indicate competence. His efforts to self-regulate in response to his parents' requests for him to try and self-calm show receptive language acuity—he clearly understands what people are saying to him—and the cognitive competence to overcome moments of anxiety that might normally end in autistic meltdown or shutdown.

If Foster's literature review was stripped down to his analysis of Deej's competence based upon his viewing of a 72-minute documentary, Behavioral Intervention would have received intensive backlash for violation of section 7 in the American Psychiatric Association's (APA) Principles of Medical Ethics, otherwise known as the Goldwater Rule. The Goldwater Rule was put in place to keep mental health professionals from conjecturing a diagnosis of a public figure's competence without proper in-person examination and assessment. I believe that targeting the documentary, then using negative and sensationalized literature on FC as a weaponized tool to justify this sort of armchair diagnosis, is a violation of the Goldwater Rule by proxy.

Filtering and presenting this film as if its entire purpose was to promote FC is inaccurate at best. By forcing academic focus away from the documentary's themes of interdependence, inclusion, and the presumption of competence, Foster does harm not only to the FC community but to people like my son who continue to suffer maltreatment because of the same scientific ableism that produced Foster's review.

As we have no accurate way of measuring intelligence without language proficiency, and literacy is often denied to non-speaking individuals without AAC support of some kind, can any psychiatric professional generalize the latent intelligence of non-speaking people with intellectual and developmental disabilities (ID/DD)? Yet this is exactly what Foster does when he posits,"Other aspects of the documentary suggest that FC's purported ability to reveal hidden intelligence is once again illusory. When a speaker calls Deej's name for a National Honor Society ceremony, Deej's mother needs to prompt Deej to walk to the stage. "

I confess I paused here and burst out laughing. Foster obviously doesn't know anything about autistic processing delays, or what event crowds, camera/cellphones flashing, and the roar of applause does to someone autistic in public spaces regardless of their degree of disability. Deej's disorientation during this event is unremarkable. He's autistic! His response was a completely natural reaction for any autistic adult. In fact, this is why his father’s surprised reaction and verbal exchange between his parents ended in their rushing to provide support. Just because an autistic person wants to try to get through a high-stress event on their own doesn't mean support persons shouldn't be there in case things go wrong. Foster's mistaken analysis of this scene does not support his thesis. It simply verifies that David James Savarese is an autistic adult who reacts as any autistic adult would in a similar situation.

Foster plowed ahead with his thesis: "When Deej and his mother pack to move to Oberlin, Deej's mother explains to Deej that some clothes are too small—he keeps them for sentimental reasons. Moments like these are easy to miss, perhaps because it is easy to forget the expectations that the documentary sets for Deej. These moments might seem compatible with a young man who has autism with complex communication needs, but they do not seem compatible with a young man who has earned his enrollment in Oberlin College."

Again Foster's lack of experience with autistic people and literature about autistic life experiences is evident in this paragraph. Just last month, a mother went through great lengths and succeeded in getting a larger size of the only dress her autistic daughter would wear. Presenting a common autistic behavior—intense attachment to meaningful objects—that is typical regardless of communication or support needs as evidence of incompetence doesn't really stand up to scrutiny.

Even if we remove Deej's disability from his desire to keep clothes he's outgrown, Foster would still be off the mark in his conjecture. Many of my high school classmates left home for college with stuffed animals, dolls, favorite clothing they had outgrown, even baby blankets that held special memories for them. No one claimed this proved they were not competent to earn their places at their universities.

I have questions about Foster's superimposing negative FC literature on the mention of sexual abuse in the documentary as well. He said: "Messages about human sexuality also reflect old problems with FC. Facilitated communication has generated accusations that specific persons have molested FC users sexually. When subsequent investigations failed to support the FC-generated accusations
(e.g., Siegel, 1995), it forced additional consideration about who was doing the accusing, the user or the facilitator? Likewise, when Deej's computer-generated voiceover states “I see scary people who want sex” and his poetry refers to prostitution, viewers should wonder whether these words reflect Deej's perspective on sexuality or a facilitator's speculation."

Let's address the topic of FC generated false reporting of sex crimes. Foster cites Siegel, 1995. But he doesn't discuss the reality that this brief used two subjects and did no general statistical analysis comparing the number of FC generated false reports to the number of false reports of the same crimes in the overall population. We all agree that the risk of a false indictment is dangerous. But we have no statistical understanding of how FC related false indictments compare to non-FC related false indictments. I am trying to understand how Siegel can generalize, or come to any conclusion from, her sample of two subjects, that the risk of false reporting/indictment is higher or lower than the general population. Siegel found that communication wasn't established in these two subjects. How can one confirm or deny anything without establishing communication with either subject? Dr. Siegel does not employ any other method of communication (a yes/no switch for example) to try and establish a baseline. We do not know if Dr. Siegal had specialized training for this type of investigation. We don't know how many interviews the two subjects were made to submit to because of their use of FC. Foster cites Dr. Siegel without mentioning her first sentence in paragraph 3 of the discussion section on page 325 where she states: "This study does not rule out the possibility that there are individuals who may communicate via facilitation when they cannot communicate orally, via sign language or via communication boards." Indeed it cannot rule out the possibility because only two subjects were evaluated.

We are current witnesses to the extremes of skepticism against science. I am concerned that approaching topics like FC that require longitudinal study, with confirmation bias like Foster’s, will push public opinion further away from the scientific community.

Foster's brief exploration of Deej as a vehicle for encouraging improper forms of scientific reasoning confused me. He says, "Deej, the person, is not necessarily representative of the diverse group of people who have complex communication needs. Even if Deej were to demonstrate hidden intelligence, it would not prove that hidden intelligence is widely prevalent. This hasty generalization could be akin to making a documentary about Lionel Messi and suggesting that Argentinians are incredibly talented footballers. Hansson (2013) described the use of hand-picked examples as a characteristic associated with pseudoscience."

But isn't Foster himself hand-picking examples of Deej's documentary and lived experience to frame his own thesis in this review? Does Foster's literature review then fit Hansson's description of a characteristic associated with pseudoscience? Or is this further evidence of confirmation bias in Foster's review?

I can't stress enough that Foster's statements reveal a lack of understanding of the challenges faced by non-speaking AAC users of any kind. When he said, "Still, evidence that Deej can communicate hidden intelligence independently is simply not there." I again feel Foster is evaluating from his armchair without factoring the impact of autistic comorbid conditions and characteristics in his conclusions. Again Foster has no qualitative research on Deej to back up his assertion.

Foster's unconcerned opining of Deej's degree of disability is very similar to the racial bias found in medical doctors. = I actually feel that if FC wasn't part of the DEEJ documentary at all, Foster would have still approached his literary review with the presumption that Deej was incompetent, given his statement,: "The documentary instead provides explanations for the lack of independent communication that follow the explanations provided by FC supporters generally. Deej's computer-generated voiceover states that no assistive device can do what his mother does and that sometimes he experiences anxiety that disrupts his ability to communicate."

I disagree with Foster's implication that Deej is discussing his mother's role as a facilitator alone. Foster does not mention the scene in the film when Deej's grandparents tell his mother that she is the only consistent thing in Deej's life during his stressful transition from the home he's known most of his life to another state and an unknown university campus. Deej, in essence, loses everything from proximity to friends who have known him since early childhood to his father who can't be with them during this transition. Foster also excludes the fact that by the end of the documentary, Deej has transitioned to the Oberlin dorms, and his mother's role is reduced to simply managing his support team. The documentary mentions Deej’s relief at having his mother return to the role of just being his mother.

I want to talk about Foster's mention of the use of a pen as a prompting object to direct Deej's typing. There is tremendous hypocrisy in how psychologists compare their own methods to those used to support typing. Hand over hand techniques and other invasive prompting is common practice in Applied Behavioral Analysis (ABA). ABA is the only therapy for autism with mandated insurance coverage in most states despite valid ethical concerns verified by recent research into ABA and PTSD in autistic clients. Behavioral psychologists do not claim that any writing done by hand over hand prompting is abusive of autistic clients. If you ask a behavioral psychologist why they are using hand over hand prompting they will tell you that the goal is to fade the invasive prompting over time so their clients eventually write independently. It is hypocrisy for psychologists to champion methods while dismissing the support of individuals who have physical barriers to typing.

While Foster included a non-apology to Deej's family consistent with his policy on respectful skepticism, any heartfelt sincerity in such apologies is lost if those delivering them are undermining a human being's right to be accepted as a competent contributing member of society while doing so.

And Foster's flawed literature review, unfortunately, introduces a taint of confirmation bias to any future publication he pens on this topic. The documentary DEEJ deserves better and so does Deej Savarese himself. I recommend that anyone viewing DEEJ watch the film with an open mind. No one's filtered view, including mine, should interfere with the sharing of one human being's story of adoption, freedom, and hope for his marginalized peers.

-----------------------------------


Nickerson, Raymond S. (June 1998), "Confirmation bias: A ubiquitous phenomenon in many guises", Review of General Psychology, 2 (2): 175–220


Foster CA. Deej-a Vu: Documentary revisits facilitated communication pseudoscience.


Behavioral Interventions. 2019;1–10 https://onlinelibrary.wiley.com/doi/abs/10.1002/bin.1687


Foster, CA. Skepticism at heart is not partisan. Skeptical Inquirer 2017


https://skepticalinquirer.org/2017/01/skepticism_at_heart_is_not_partisan/


Hagiwara, N., Slatcher, R. B., Eggly, S., & Penner, L. A. (2017). Physician Racial Bias and Word Use during Racially Discordant Medical Interactions. Health communication,


32(4), 401–408. doi:10.1080/10410236.2016.1138389


Confirmation Bias


https://en.wikipedia.org/wiki/Confirmation_bias


Kupferstein, Henny (January 2018) “Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis” Advances in Autism ISSN: 2056-3868


https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html


UN calls for investigation of US school's shock treatments of autistic children


https://www.theguardian.com/society/2012/jun/02/un-investigation-shock-treatments-autism


School Shocks Students With Disabilities. The FDA Moves To Ban The Practice.


https://www.npr.org/2019/01/23/687636057/massachusetts-school-defends-use-of-electric-shock-treatments


The Legacy of the Civil Rights Act of 1964


https://www.history.com/topics/black-history/civil-rights-act#section_4


Bruno Bettleheim, The Empty Fortress


https://archive.org/details/emptyfortressinf00bett_0


Leo Kanner's infamous 1947 Time Magazine interview that began Bettelheim's destruction of autistic children and their mothers with quotes like "The children, says Dr. Kanner, were "kept neatly in a refrigerator which didn't defrost."


http://content.time.com/time/subscriber/article/0,33009,798484,00.html


Siegel, B. (1995). Brief report: Assessing allegations of sexual molestation made through facilitated communication. Journal of Autism and Developmental Disorders, 25(3), 319–326. doi: 10.1007/bf02179293
Hansson, S. O. (2013). Defining pseudoscience and science. In M. Pigliucci, & M. Boudry (Eds.), Philosophy of pseudoscience: Reconsidering the demarcation problem (pp. 61–77). Chicago, IL: University of Chicago Press. https://doi.org/10.7208/chicago/9780226051826.003.0005
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Forcing Friendships Doesn't Equal Autistic Youth Gaining Social Skills

My son's first friendships were with family.
[Image of a hug between Mu and his adult big sister. His back is to the camera.
His sister is smiling. Posted with the permission of the subjects.
Image by their father, Nuri Cevik.]
Kerima Çevik
theautismwars.blogspot.com

"How do I handle my child seeing the children of every new family who moves into the neighborhood surrounding us included in outdoor play knowing he is being excluded from the group?"

I saw another parent posting this question as one of the most frequent questions autism parents ask as their kids become preteens and teenagers, and I cringed a bit. It is a common concern for all families with autistic youth trying to navigate a world where they are often othered and mistreated. My son and I also see them when we hang out on our deck or the backyard in the summer, or on snow days. Kids his age, teenagers, will for the most part either ignore him, ridicule him, or ask to do his respite care to fulfill their community service requirement at school. They never ask him what he wants.

That last bit is particularly anger-inducing. Asking for my son as if you are doing me the favor of walking the family dog is dehumanizing to my son in a dismissive way that reeks of ableism on steroids. These are not the kinds of interactions that will help him build the self-confidence he will need to navigate this world after his father and I are gone. He needs to understand that random people may be ableist and some people are dangerous. He needs to know that some will offer friendship as a ruse to some other end. He must be given the chance to interact enough to grasp the differences between true friendship and all other types of approaches.

My son is not just Autistic. He is the son of a Black woman. Survival social skill building is a requirement of being Black in America. Like code-switching to gain access to better education and employment opportunities, knowing who hates you and what that looks like can keep you alive. In approaching/considering my son’s interactions with others, my racial and ethnic experiences inform my stance on his human rights.

Parts of my childhood were spent in areas where my siblings and I were the only African American children in predominantly white neighborhoods and schools. We were in North Carolina in 1972, where "This is Klan Country" billboards appeared on highways in several parts of the state. We never lived or went to school with the expectation of friendship. We were taught to survive the environments, which were for the most part hostile to us.

My mother was an educator. Her parenting flaws were legion but she had a tendency to rise like a phoenix in times of adversity. When I came home at age twelve with a bruise on my cheek asking what an n-word was, she pulled out an unabridged dictionary and had me look it up. Then she told me in terms that I could understand what this slur was meant to do and why it was untrue. We discussed how I would handle my bullies. She warned that even those in authority might hold biases and turn away while I was being beaten and how to reduce situations ripe for being dragged off and beaten up at school in the future.

My mother said something to me back then that was life-changing. She said people were not required to like me or befriend me. They were required to respect my right to exist, to move in the same space, and to be treated equally under the law.

That is what I want my son to learn. I want him to know, as an Autistic person, that he can choose to befriend someone or not. An autistic young person has the right to have an active and willing agency in the process of deciding who to befriend, what boundaries should be set on such friendships and who they are just not comfortable with. Before any of that can happen, they must understand not to comply with every demand made to them from everyone. They need to understand they have a right to say no to people. And they need to know what kinds of behaviors are abusive and wrong.

But I don't see this happening with parents. The focus is on finding friends, even finding dates when children become teens and adults, without assessment or understanding of their children’s needs, wants, or ability to protect themselves from harm. This goes hand in hand with the belief that friendship by any means necessary with "normal" teens will "rub off." As long as parents force friendships their autistic kids will someday go to sleep at night and wake up magically typical in the morning. Any sign of intolerance from their autistic offspring for whatever the parent views as ideal social interactions with peers is then a behavioral challenge needing to be imposed not only on the disabled child but on peers in the neighborhood. This escalates to pleas to communities to create normalizing events by inducing pity for the autistic child or young adult to elicit a response from the schools, friends, or neighbors.

I hope I never embarrass my son by blasting a social media demand that someone come and befriend him without his consent. He played with other children on playgrounds until he didn't wish to go to them anymore. The noise of a gaggle of young folk filling a sidewalk and refusing to yield to his wheelchair is not particularly pleasant for him. If the non-disabled peers who are his neighbors don't even have the courtesy to yield when needed unless he glares at them, how can I as a parent demand that those same teens befriend him?

Contrary to assertions that these forced experiences are a necessary part of the social skills process, the aggressive demand of parents that other teens interact or befriend their autistic teen can backfire by being off-putting. Negative responses from teens cliques/groups parents wish their autistic teen was part of are NOT teachable moments. My view is that my son is a human being, not a social science project. He doesn't exist to teach his non-disabled peers tolerance.

Two cautionary tales of autistic teens irrevocably harmed by the mistaken parental idea that somehow they had neighborhood friends are the cases of the autistic teen boy in Ohio who was assaulted by five teen males with bodily fluids during a faked ice bucket challenge, and the case of an autistic teen boy who was systematically tortured during snow days and holidays by two teen girls. In both cases, parents spoke of insisting their teens leave with their abusers, even when they showed reluctance to do so.

The parents spoke of being relieved their offspring had made friends with typical neighborhood peers. They had no idea their children were being victimized by their "friends." The need for the parents to want their children to have friends in order to make parents feel better overrode possible red flags about these relationships they might have spotted immediately otherwise.

In contrast, every person who has genuinely befriended my son has come directly to him, not me, and extended their hand or signed to him or asked him if he would like to sit with them. They made it clear to my son that they wanted his friendship and their intent was transparent. And yes, they knew he was a nonverbal autistic. They only asked how he communicated, respected boundaries, and made an effort to find activities that allowed him to see us and understand he could return to us anytime he wished.

My point is simple. We parents shouldn't push friendships on our autistic children because we think they need to have them to reach a goal of being indistinguishable from their typical peers. We shouldn’t presume their incompetence at acquiring friends or berate them for not having any or enough friends. We should not create or force participation in events requiring typical partners and then send social media lamentation that our kid is autistic and has no friends when things don't go well. What parents do by this behavior is to broadcast across a global platform that they have a vulnerable disabled person who is friendless. They broadcast that they are willing to force their autistic loved one to comply with anyone who presents themselves as a potential friend to them. This destroys our young people’s self-worth, reinforces the belief that they must comply with everyone’s demands, and leaves them with a sense of helplessness and lack of agency in their own lives.

Look at what your autistic offspring like, what they want, and how they navigate the world first. Consider what would work for them. Then sit with them and however they communicate with you, explain consent and boundaries. Only when parents are certain their autistic teens want friendship facilitation and understand boundaries and consent should friendship facilitation happen with the active agency of the autistic teen. Otherwise, this is about us, not them.

P.S. Friendship facilitation does not mean broadcasting your teen's lack of friends online or trying to gaslight other teens into taking them to events like homecoming dances, proms, or birthday parties. It means looking for meetups and events that will be accessible to your autistic teen, asking them if they want to participate, and allowing them to leave if and when they wish.

This could save our children from irreparable trauma.

Peace.

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A version of this article was previously published at The Autism Wars.
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Autistic Burnout: An Interview With Researcher Dora Raymaker

Dora Raymaker is a researcher, writer, and artist based in Portland, Oregon. She is co-director of the Academic Autism Spectrum Partnership In Research and Education (AASPIRE) with Christina Nicolaidis. AASPIRE is currently running a pilot study on autistic burnout and suicidal behavior. Autistic people have often talked about burnout, and it emerged as a major theme in their previous study on autism and skilled employment, but up to now, it has received limited attention from researchers.

Fergus Murray interviewed Dora for Thinking Person's Guide to Autism.

Photo courtesy Dora Raymaker
[image: Dora Raymaker, a white person with
curly shoulder-length red hair with one teal
lock, glasses, and a steady gaze.]
FM: Could you summarise what autistic burnout means to you?

DR: The question evokes for me the impacts of autistic burnout on my own life, like "it means feeling my abilities and successes slip away and being powerless to stop it..."

But I think it is more asking, "how would you define autistic burnout?" I think that's an important frame for the rest of the conversation. We're still a finalized-analysis away from coming up with a definition grounded in research, but a fair start at an operational definition might be, "A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one's abilities and needs." In other words, autistic burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.

FM: There has so far been very little research on autistic burnout, although it is something autistic people have been talking about for a long time. Why do you suppose that is?

DR: Autism research, until fairly recently, has been mostly directed by non-autistic researchers, professionals, and family members whose priorities may be different from, or not fully inclusive of, the priorities of autistic people. Add on top of that a still-pervasive medical model of autism in the research world (disability as a disease to be cured, rather than disability as a divergence to be supported) which makes it even harder to get through the barriers between what we've been talking about wanting and what autism research is actually examining. This is a complicated topic I could probably spend the whole interview on, so I'll stop my geekery about it there, LOL.

Anyway, I'm hopeful that we'll have more research about autistic burnout (possibly disability burnout?) in the future. Autistic people have more voice in research than we used to, from the policy level to the participant level. Also I'm anticipating the surge of work into connected topics, such as camouflaging and mental health, will bring autistic burnout more into the awareness of the research community.

FM: How do you see the relationships between burnout and other experiences often reported by autistic people—meltdowns, shutdowns, sensory overwhelm, and catatonia?

DR: These other experiences are distinct states from burnout, but people report experiencing them far more often when also in a state of burnout. If we consider autistic burnout as a reduction in resources to cope with activities and environments that were already difficult—including by camouflaging and all the negative consequences of that—then it makes sense that a person would be left with less ability to tune out sensory stimulus, breathe through their trauma-reaction, or otherwise avoid the triggers for these other states. Nearly everyone we've spoken with in our research cited increased instances of these experiences as a consequence of the burnout.

FM: Have you been able to show what some effective strategies for coping with or avoiding burnout might look like?

DR: We asked people in our interviews what strategies helped them avoid or recover from burnout. We also looked at social media, where people have been sharing strategies. The community has also been compiling this information, and there are some good resources out there, like this guide from Autistic Women and Nonbinary Network (AWN). I recently did a talk at Seattle Children's Hospital on the research, and the slides from that talk also list a number of the strategies. You can get the slides here, and the talk should be available on YouTube at some point. Until then, it was recorded on Facebook, and you can view it there.

The tl;dr version: being accepted for who you are as an autistic person and supported by others, being able to act autistic and do things that fuel you (like engage in special interests), taking time off, and having a reduction in expectations to do things in the same way as non-autistic people are some of the primary things that help.

FM: Many autistic adults report that they only realised they were autistic (or only received professional help) after experiencing burnout. Some may have talked to specialists before this, and been denied a diagnosis because they were not seen as sufficiently impaired. Do you think it might help some people to avoid burnout, if it was easier to be formally identified as autistic without insisting that someone's autism must 'limit or impair everyday functioning'?

DR: Yes, absolutely. Even just realizing that you're probably diagnosable could be helpful, because it gives you access to community wisdom, and the strategies people use.

However, if the dynamic of autistic burnout really is related to spending more resources coping than one has, I'm not sure the real leverage in avoiding burnout resides with the autistic person alone. Especially because a number of the strategies people have to avoid or recover from burnout involve being able to act more autistic, being accepted as autistic, and getting support and accommodations--all things that require the cooperation of others. So we need to also be looking at ways to make neurodivergence more accepted and less stigmatizing, as well as ways for services to become more inclusive of supporting autistic people who appear to be "functioning well." Knowing you're on the spectrum, alone, isn't, in my opinion, going to fix this.

FM: Some have suggested parallels between autistic burnout and Chronic Fatigue Syndrome. Do you think this is likely to be a fruitful connection to explore in future research?

DR: I'm not a clinician and don't have interest in clinical research. However, there are clinicians like Christina on my research team. Her impression from descriptions of autistic burnout are that it's likely a different thing from CFS (although one could certainly be experiencing both), and that addressing autistic burnout directly is probably going to help more people than looking for a possible relationship between it and CFS. That said, it could be research for someone else with interest in that area to explore.

FM: You’ve completed the first stage of your study, interviewing ten autistic people about their experiences of burnout. Did any surprising themes emerge in these interviews?

DR: Since many of the people on our research team have been part of the Autistic community for years where autistic burnout is frequently discussed, I’m not sure that there were any particularly surprising themes to us. One of the themes that might be most surprising to the general public is that some things they might think are good for autistic people—learning to emulate mainstream social behavior, appearing to “overcome” autistic traits, things like that—may actually be hurtful in the long-term. I think it makes sense if a person thinks about it—if you were asked to pretend to be something you’re not constantly out of fear of negative, possibly life-threatening consequences, and it was very difficult to do, how long could you keep it up? I think it might surprise some people how close autistic burnout is in a lot of ways to professional burnout, or to caregiver burnout, or something else that they might have experienced themselves.

FM: You plan to develop tools to measure burnout in the second part of your study. How might you go about measuring something like that—and what sorts of uses do you foresee for it?

DR: Measurement is a whole field of research in itself. This study is using a mixed-methods approach to create a survey. That means first we’re doing this qualitative part to understand what ideas, or “constructs,” might need to go into a survey to measure autistic burnout. We’re putting together the symptoms of burnout that people talked about in their interviews, on the blog posts, in the community to create a draft of that measure. Then we’ll be trying the survey out with a small number of participants. They’ll take the survey, along with some additional surveys, and be able to give some written feedback. We can then run statistics on the results to start validating the measure. We can learn things like, does the survey contain the right constructs? Do the sections of the survey group together well? Is there an expected relationship between scores on the autistic burnout survey and another survey; for example do people with high burnout scores also have low self-efficacy scores (since people in our interviews talked about a loss of self-confidence when in autistic burnout)? These are all parts of validating a measure. Then we refine the measure and test again.

As far as uses, there are many. Two big ones related to the work I’m most interested in are: 1) It can be used to tell if someone is experiencing autistic burnout, which could then change how services or supports relate to that person; 2) If anyone creates an intervention, or a program of some sort, to help prevent or relieve autistic burnout, a measure will be needed to know if the intervention is working; in other words, you need to be able to measure it to know if you have changed it.

FM: What’s next for AASPIRE?

DR: A lot! We have multiple projects, including our ongoing work on issues such as healthcare and employment, and a new branch of AASPIRE starting up in Australia. You can visit aaspire.org to see some of what we’re up to. As far as the burnout research, the next steps after finishing up this study are 1) to publish papers in the academic and clinical literature to start getting the word out, and 2) to apply for new funding to further test the measure and begin exploring further how autistic burnout impacts people’s lives, so that we can start working toward creating an intervention to prevent or relieve it—as well as giving others tools to do the same.
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Stop Claiming Autistic People Who Commit Sex Crimes "Don't Know Any Better"

Cropped photo of a shadow of two people, on grass. A foo t in a woman's black flat shoe is visible on the lower right.
Photo © Jan Olof Nygren | Creative Commons
[image: Cropped photo of a shadow of two people, on grass.
A foo t in a woman's black flat shoe is visible on the lower right.]

Zack Budryk

twitter/@BudrykZack

A show that ran as long as Law And Order is, naturally, going to have some off days. I’ll admit to occasionally tuning into the show’s seemingly never-ending basic cable blocks as a guilty pleasure. One of the telltale signs you’re about to watch one of the shitty ones is when the culprit is apprehended about 20 minutes in. When it’s taken care of that early, you know the trial portion of the episode is going to revolve around the perpetrator’s lawyer arguing that their client killing people is a medical condition or something similarly absurd. So you can imagine how irritated I was, to say the least, when someone decided to pull the same trick  in real life.

The Internet is vast and contains multitudes If, for some reason, you want to identify the absolute worst people on here, there are several ways you could go. There are the neo-Nazis of course, but there are also the mass-shooting truthers, the guys who call everything “free speech” and of course, whoever wrote this.

But a top contender is the “pickup artist” community, a blanket term for various oily sleazes who purport to teach men to score through tactics aimed not at genuinely being more appealing to women, but at manipulating them or wearing down their resistance. As you might imagine, obtaining consent is often neither here nor there for these people, and some of the subculture’s most famous faces, such as sex tourist Roosh Valizadeh, are admitted rapists.

Which brings us to Jason Berlin. Berlin was sentenced to prison for participating in the rape of an inebriated woman in 2013. At the time of his crime, he was paying for seminars that claimed to train men in pickup artistry, or “game,” in their parlance. Last week, Berlin’s lawyer argued in a sentence-reduction hearing that Berlin had recently been diagnosed with an autism spectrum disorder and as such was not aware raping women was wrong. It’s difficult to know where to begin with something this obscene and absurd. It brings to mind theoretical physicist Wolfgang Pauli’s reaction to a poorly written paper: “That is not only not right, it is not even wrong.” Berlin’s defense claimed he was manipulated by his co-defendants, Alex Smith and Jonas Dick, and that he had the “social and emotional capacity of a 5-year-old,” according to the Daily Beast.

As an autistic man who’s been married for five years and in a relationship for nearly a decade, I have a front-row seat to the ways this argument is bullshit. First of all, while autistic people are in fact susceptible to manipulation from neurotypical people, we also have strong senses of right and wrong. This is especially true when we’re younger. For example, when I was in fourth grade I printed up a broadsheet about how my classmates were sliding into juvenile delinquency by saying things “sucked” because my parents had forbidden me to say it.

Berlin, autistic or not, actively boasted about the incident and blogged about his goal of having sex with 15 women over a three-month period. The defense’s implication that simply having autism made Berlin an incompetent child is difficult to square with the $2,000/month apartment Berlin rented for himself and his partners. Paying rent and maintaining an apartment are relatively complex life skills. Local coverage of the trial noted that while Berlin was unemotional in his apology, he “cried openly when his mother turned and faced the victim and apologized to her.” I realize our understanding of autism is constantly evolving, but what’s described here sounds less like autism and more like “not actually being sorry.”

This argument is offensive because it plays into the stereotype that autistic people as exclusively white men who have problems relating to women. This ignores the fact that not only do autistic women, exist, but they too are susceptible to manipulation and are at high risk of sexual abuse as a result. By treating autism as some kind of brain parasite that removes men’s capacity to know rape is wrong, Berlin and his defense have reinforced those stereotypes and actively made these women’s lives harder.

Like a lot of people on the autism spectrum, I struggled with modern dating rituals until I found a partner who clicked. It’s true that dating is an environment that can be particularly fraught for autistic people. But—and I didn’t expect to have to clarify this, yet here we are—there’s a difference between “getting a date is confusing” and “I don’t know not to have sex with someone without their permission.” In trying to blur these lines, Berlin is infantilizing himself and all autistic people and playing into misconceptions that allow non-autistic people, often with ill intent, to step in and presume to speak for us. It also plays into the insidious, well-established tradition of connecting violent crime with autism as in the cases of Sandy Hook shooter Adam Lanza, misogynistic spree killer Elliot Rodger, and, not a week after he murdered 58 people in Las Vegas, Stephen Paddock.

A spotlight is currently shining on just how easy it is to prey on women in our society in general. To blame what Berlin did on autism is not only ableist and scientifically unsound, it ignores our disturbing tolerance for this kind of behavior. Something makes men like Berlin decide not that what they do is wrong, necessarily, but that the wrongness of what they do is irrelevant. If we focus on autism, rather than whatever that thought process, is, we won’t do anything to prevent future Jason Berlins. All we’ll do is continue to stigmatize autistic people.

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This article was previously published at NOS Magazine.
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Being Hyper-Verbal Is A Real—And Disabling—Autistic Experience

Two Vietnamese men, seen from behind, wearing billed caps and squatting as they have a conversation. The man on the right is gesticulating with his left hand
Photo © ePi.Longo | Flickr / Creative Commons
[image: Two Vietnamese men, seen from behind, wearing billed caps and squatting as
they have a conversation. The man on the right is gesticulating with his left hand.]

M. Kelter
www.TheInvisibleStrings.com

Content note: This article discusses suicide risk factors specific to the autistic experience.

I worry that too many people think of hyper-verbal autistic speech as being synonymous with "articulate" or "fast" or as something purely beneficial. This is actually not correct. Hyper-verbal autism is autism, and it is a disability. I want to provide a few details about how it generally works, so that I can draw a line connecting it to what people generally think of, when they think of autism.

I am on the spectrum, and I was fortunate enough to spend a few years working with a specialist who taught me the parameters of my particular way of engaging with language. We found that my verbal processing tends to create difficulties for me when it connects up with three factors: Emotional volume, thought speed, and social pragmatics.

What I am going to describe here is the way hyper-verbal speech works for myself—one, non -representative individual—and the way that these factors are exactly what you would expect to find in the realm of autism.

Some who have children with significant degrees of intellectual disability feel like conversations like this can obscure what they call "real" autism. But this, too, is incorrect. The distinction they are making only manages to cut the common thread that connects varied autistic experiences into a coherent neurological profile.

To explain what I mean by that: there simply is no reason to see different experiences with autism as mutually exclusive, as if they are in competition for territory. Autism is a disability that impacts communication. And because there is predominantly a genetic basis—there are currently 102 genes associated with ASD—you would actually expect for people on the spectrum to be very different from one another. The genetic complexity means that people are taking many different neurological pathways into an autistic profile.

The unifying component of autism is communication, not the many individualized forms communication can take. If you focus only on differences at the expression side of autism—whether someone is verbal or non-verbal—you are going to skip over that essential shared ground. Variations are not invalidating of a diagnosis, they are what you would expect to find in a condition this genetically heterogeneous.

So, that's how the different types of autistic communication link up, but I do want to go into some detail about accelerated language since it is one of the ways that autistic communication happens.

Take that word "accelerated" and think of hyper-verbal speech as an accelerant or a fuel, something combustible that can turn volatile when mixed with the wrong variables (like fire, for example). Then take that accelerant and throw it on a mood.

When words are naturally assembled in such a way that they bring a detailed, granular focus to an experience, it can become quite destabilizing if that experience is an emotion. The words take the volume of a mood and turn them to a much higher level.

Hyper-verbal autism is no joke. It is not an affectation. When anger or depression or self-hatred gets a boost from this kind of added intensity, it can be very difficult to steer in a better direction. The interplay between mood volume and hyper-verbal speech is under-discussed and under-appreciated as a risk factor for suicide in autistic people. Please believe me when I tell you this.

These concerns include risks for children, as well as teens and adults. If you are a parent and you do not believe me when I say this kind of speech can be extraordinarily difficult to manage, ask another parent of a hyper-verbal autistic child. I am quite confident that they will tell you, at least in many cases, that the internal fights these children go through as they battle with their own words; it can be a terribly difficult situation.

If we are thinking of words as a kind of fuel, thoughts are what drive the vehicle. The speed with which words can form and race to new and varied patterns can make concentration a daily, hourly nightmare. I am rarely able to concentrate. Simple tasks are not simple. Every possible thought is instantly ten alternate thoughts that quickly grow to a hundred and then more and when you take that head space into a grocery store or a school test or a job interview, most of every day can feel like an incredibly frustrating obstacle course.

That's internally. Externally, people interpret your concentration issues a lot of way. It can scan as not paying attention, as rude, as flighty, as indifferent, as lacking empathy (because you're too overwhelmed to notice subtle emotions and people, not understanding autism, feel neglected and inadvertently spread myths about empathy) and so on. The concentration issue alone can lead to significant degrees of impact and disability when it comes to daily functioning.

Take the mood thing, the thought thing and imagine how they play out in the middle of a real-time social interaction. It can be extremely disruptive. The impact of this kind of autistic speech can be significant and—due to the hostile reactions it receives from the rest of the word—it can easily lead to depression and social isolation.

Via front-line observation, I can report to you that in social contexts, hyper-verbal autistic speech functions like a chain event. As a child, I had social needs, I liked approaching other kids and sharing my thoughts, but that's now how interactions work. You have to know the social codes and hidden social rituals, and my words blew past all of that like a boulder going downhill. I would approach kids and start talking out of my head in a deluge of monologue, and that only ever drove kids away, or elicited bullying (aka violence). Mood disorders and social isolation ensued. It was a chain event.

To be clear, the answer back then would not have simply been to have me talk less. People tried that, but it didn't take because that's not how autism works. The answer would have had a lot more to do with changing the way people react to autistic differences, but we can take that up in another post.

If you are someone who generally believes that hyper-verbal autistics are arrogant, or have it easy, or that they do not have "real" autism: please know that you do not understand what autism is, and you are not helping autism conversations. What you are doing is are disparaging a group that doesn't need more disparagement. My only hope is that you can sense that I am trying to share good information with you here, and that you do not need to shout at autistics on twitter because they said a thing.

I honestly believe people will have an easier time understanding the autism spectrum the instant they stop creating nonsensical barriers between autistic people and their lived experience, and the ways that they engage with communication. New school, 2019 autism is simply a better conversation to have. I did not like the old one.
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