Tuesday, August 31, 2021

The Autistic Community’s Concerns Regarding Spectrum 10K and Eugenics Are Valid

Photo of a yellow diamond "Dead End" road sign flooded to mid-post and reflected in the water underneath.
By athree23 from Pixabay
[image: Photo of a yellow diamond "Dead End" road sign flooded to mid-post
and reflected in the water underneath.]

A new autism research project, Spectrum 10K, has just been launched accompanied by much media hype, celebrity endorsement, and rhetoric about neurodiversity. It is led by the University of Cambridge (principally Professor Simon Baron-Cohen), in collaboration with the University of California, Los Angeles, and the Wellcome Sanger Institute. Spectrum 10k aims to be the largest genetic study conducted on autism in the United Kingdom's history, and is trying to collect the data of 10,000 autistic people and their families.

We write in personal capacity as concerned autistic academics who research autism in the UK from a variety of fields. While the project’s aim is to help cultivate autistic wellbeing, the main outcome of the project is to generate an autism DNA database, which will likely be used by other researchers. A key worry expressed by many autistic people is that this database will be used for eugenic purposes in the future such as preventing autistic or otherwise neurodivergent people from existing. 

For the most part, autistic people and our families do not want funds to be used on genetic research, and would prefer them to be used to focus on services and societal interventions that can impact the wellbeing, quality of life, and mental health of autistic people across the lifespan. So far no genetic studies have improved autistic people’s lives, yet biological research continues to consume most autism research funding.

A bar chart: "Percentage of Total ASD Funding by Research Priority According to Country" The four countries are Australia, Canada, United Kingdom, and United States. Australia's percentages are Screening & Diagnosis: 11%, Biology: 17%, Risk Factors: 22%, Treatments & Interventions 9%, Services 10%, Lifespan Issues 11%, and Infrastructure & Surveillance 21%. Canada's percentages are Screening & Diagnosis: 9%, Biology: 40%, Risk Factors: 26%, Treatments & Interventions 27%, Services 2%, Lifespan Issues 10%, and Infrastructure & Surveillance 6%. United Kingdom's percentages are Screening & Diagnosis: 6%, Biology: 64%, Risk Factors: 0%, Treatments & Interventions 20%, Services 1%, Lifespan Issues 9%, and Infrastructure & Surveillance1%. United State's percentages are Screening & Diagnosis: 8%, Biology: 35%, Risk Factors: 24%, Treatments & Interventions 16%, Services 5%, Lifespan Issues 2%, and Infrastructure & Surveillance10%.
Source: Interagency Autism Coordinating Committee
[image: A bar chart: "Percentage of Total ASD Funding by Research Priority According to Country"
The four countries are Australia, Canada, United Kingdom, and United States.
Australia's percentages are Screening & Diagnosis: 11%, Biology: 17%, Risk Factors: 22%, Treatments & Interventions 9%, Services 10%, Lifespan Issues 11%, and Infrastructure & Surveillance 21%.
Canada's percentages are Screening & Diagnosis: 9%, Biology: 40%, Risk Factors: 26%, Treatments & Interventions 27%, Services 2%, Lifespan Issues 10%, and Infrastructure & Surveillance 6%.
United Kingdom's percentages are Screening & Diagnosis: 6%, Biology: 64%, Risk Factors: 0%, Treatments & Interventions 20%, Services 1%, Lifespan Issues 9%, and Infrastructure & Surveillance1%.
United State's percentages are Screening & Diagnosis: 8%, Biology: 35%, Risk Factors: 24%, Treatments & Interventions 16%, Services 5%, Lifespan Issues 2%, and Infrastructure & Surveillance10%.]

Despite fierce opposition from autistic people on and beyond social media, the key further clarification from the Spectrum 10k team has come in the form of an FAQs document. Here they explain that they want to use the DNA to target co-occurring conditions rather than autism itself, and moreover that they will be careful with the data to make sure it will not be used for eugenic purposes. While targeting some co-occurring conditions such as epilepsy may be a legitimate aim, there are two reasons to be worried by this reply.

First, we are sceptical that data protection against eugenic applications can be guaranteed. Newly discovered genetic syndromes could give rise to more prenatal tests. The study was approved to be shared “[i]n some instances” with “commercial collaborators” or “potential academic collaborators” or in “highly secure research databases”. Baron-Cohen himself has previously warned, “There’s no way that we can ever say that a future political leader or a scientist won’t use [genetic autism] research for eugenics.” Beyond this, autistic advocates have raised concerns about some of the researchers involved, and the Sanger Institute, which is involved with the Spectrum 10k project, has been accused of misusing DNA as recently as 2019.

Second, some of the co-occurring conditions they list as targets are ADHD and dyspraxia, which we likewise do not think should be targeted for elimination. They also target mental health problems such as anxiety and depression. While targeting mental health problems is welcome, underling the idea that these can be explained by autistic DNA shows the implicit genetic determinism expressed in the project. In fact, research suggests that autistic mental health and wellbeing issues are accounted for by stigmatisation, a lack of societal acceptance, a pervasive need to mask autism to “fit in” to avoid victimisation, a lack of services which are accessible and adapted for us, and other social and interpersonal barriers that genetic data cannot, and never will, address.  

Many autistic advocates clearly feel that the project’s team have not addressed or have dismissed their concerns, as can be seen by searching through the #StopSpectrum10K hashtag on Twitter. One celebrity ambassador responded by seeming to imply that concerned autistics were “conspiracy theorist[s]” who simply “fear science.” Yet the worries being expressed by many members of the autistic community are valid.

From the beginning of the conceptualisation of autism as a diagnostic category in Nazi-annexed Austria, autistic people have been subject to eugenic efforts, with Dr. Hans Asperger first diagnosing and then dividing autistic children into those worthy of life and those to be murdered. This genetic determinist tradition has been maintained with initiatives aiming for prenatal tests and genetic markers to prevent autism and co-occurring disabilities in the first place. Today, autism researchers regularly display a negative bias towards autistic people. Autistic people are still often dehumanised in research through being compared to non-human animals (the subject of almost as much “autism” funding as human participants), are referred to as less domesticated, treated as evidence of an epidemic or burden, and are rarely meaningfully involved in autism research.

Autistic people celebrate equitable science, and often call for higher standards, rigour, and involvement in the process of science. Members of the autistic community are justified in worrying that this autism genetic project, which may bring some good, might also contribute towards untold harm. 

Robert Chapman, PhD (philosophy and bioethics)
Monique Botha, PhD (community psychology)
Steven Kapp, PhD (psychology and disability studies)
Anna Stenning, PhD (humanities)
Amy Pearson, PhD (developmental psychology)
Eloise Stark, DPhil (experimental and clinical psychology)
Damian Milton, PhD (social sciences)
Gemma Williams, PhD (linguistics)

Friday, August 27, 2021

Autism in Kenya: An Autistic Advocate's Perspective

M. Kelter, Interviewer
theinvisiblestrings.com

Content note: mentions of restraint, ableism

Netplus Kenya has been hosting an online series of moderated discussions in an effort to address high levels of stigma against people with disabilities there, stigma associated with long-standing cultural practices.

This series is called the Watoto Wetu Initiative. It’s next installment is this Saturday, August 28th, and will feature autistic activist Karen Muriuki sharing perspective on the urgent need to minimize life-threatening stigmas so that families can begin improving outcomes and quality of life for autisic people and other vulnerable communities. 

I communicated with Karen to ask about this speaking engagement and about the challenge of sharing information in areas where traditional beliefs define how many perceive and react to autistic differences.

M: What is the main theme of this event and who is the audience these presentations are intended to reach?

Karen: The event is about the need to protect people with disabilities in Kenya. I will be speaking on social protection of disabled individuals and asked questions by the moderator. The audience is both medical professionals and parents, but it’s also open to the public because we want full participation in this.

M: To what degree is autism known about or discussed there?

Karen: Unfortunately, not much awareness is done here due to society’s perception of autistic individuals, as well as how the media portrays autistic people. [Autism] is viewed as a curse, as possession by evil spirits, or the result of bad marital negotiations and bad parenting. Stigma has been and is still rampant here. There’s a little bit of improvement but still it is terrible. And they ignore those with hidden disabilities such as autistics like us which is really sad.

M: Are you gathering most information online, or are there conversation groups of any kind?

Karen: Mostly on the internet and also from my medical records. I found a report from a paediatric doctor who diagnosed me as autistic, it was my self discovery moment in my twenties because nobody in my family had wanted to tell me that I was autistic due to taboo, shame and stigma.

M: What were the types of information and resources that you found to be most helpful, in terms of understanding autism and your own experiences with it?

Karen: I found Autism Speaks first but later felt uncomfortable with their rhetoric. I decided to look for autistic-led articles and watch YouTube videos from other autistic people who’ve experienced masking, emotional abuse, and feeling misunderstood by neurotypical family members.

M: Have you been able to locate other autistic activists in Kenya? 

Karen: We were three but recently we have added a fourth one as well. There are autism groups here but they are parent led.

M: Do the four of you communicate regularly with one another?

Karen: Yes, on a daily basis despite them having struggled like me in terms of acceptance. We support one another in this.

M: As you share information about autism in a public way, is there a risk of backlash from your family or from others?

Karen: Oh yes, definitely, from non autistic family members who still do not understand me and my advocacy journey.

M: Is there any way people can help your efforts there, in terms of social media support?

Karen: You can highlight the plight of autistic people in Kenya, especially in rural areas where many autistic people are kept hidden, some are kept tied to trees. It helps for information about autism in Kenya to appear in blogs and videos.

M: Would you like to introduce yourself or share any other thoughts about your activism? 

Karen: I am Karen Muriuki, an autistic self advocate and activist from Nairobi, Kenya. I tell you educating the masses here isn’t very easy due to society’s mindset of disability, but when we educate them from our perspective in layman’s language, then they can begin to understand why awareness is so desperately needed here, especially in rural areas of the country.

Karen will be speaking Saturday, August 28 between 7pm and 8:30pm GMT +3 (9am PT/noon ET). If you would like to follow the event live, here is a link with the details:
https://twitter.com/karen_muriuki/status/1429428011758202887/photo/1

Follow Karen on Twitter: @karen_muriuki

The image is a poster announcement for an upcoming Netplus event in Kenya. The background of the image is white, with some darker white brush marks at the top. Along the right side of the poster, crayon-styled squares have been drawn, with squiggly lines filling them in. The boxes are different sizes and different colors alternating between green, blue, yellow and purple.  Details of the event are as follows: Watoto Wetu Initiative, online series. The role of leadership in protecting PWDS (the word leadership is in bold black font). Speaker: Karen Muriuki, autism activist. Moderator: Benjamin Wafula, Netplus Kenya volunteer. 28 Saturday, August, 7 pm 830 pm. Meeting ID: 834 2482 9648 passcode: 738329   Profile pictures for the speaker and moderator:   At the bottom of the poster are a row of icons for participants in the event. From left to right the icons are: a light blue, circular symbol for The Ready Aiders Foundation; the Netplus symbol (green, crayon-styled drawing of a lightbulb next to the word Net and a plus symbol). Next, there is the word platform and zoom, below them reads: Contact no 0731482762 then a dividing line followed by 0705526422. Finally, there are three symbols for Netplus on social media, icons for their twitter, you tube and instagram account
[image: A poster announcement for an upcoming Netplus event in Kenya. The background of the image is white, with some darker white brush marks at the top. Along the right side of the poster, crayon-styled squares have been drawn, with squiggly lines filling them in. The boxes are different sizes and different colors alternating between green, blue, yellow and purple.

Details of the event are as follows: Watoto Wetu Initiative, online series. The role of leadership in protecting PWDS (the word leadership is in bold black font). Speaker: Karen Muriuki, autism activist. Moderator: Benjamin Wafula, Netplus Kenya volunteer. 28 Saturday, August, 7 pm 830 pm. Meeting ID: 834 2482 9648 passcode: 738329


Profile pictures for the speaker and moderator:


At the bottom of the poster are a row of icons for participants in the event. From left to right the icons are: a light blue, circular symbol for The Ready Aiders Foundation; the Netplus symbol (green, crayon-styled drawing of a lightbulb next to the word Net and a plus symbol). Next, there is the word platform and zoom, below them reads: Contact no 0731482762 then a dividing line followed by 0705526422. Finally, there are three symbols for Netplus on social media, icons for their twitter, you tube and instagram account.]

Monday, August 23, 2021

Learning Life Skills or Just Playing a Game? Why Can't It Be Both? An Autistic perspective on TTRPGs

Shawna Spain
twitter.com/LikeSevenSpoon

Woman with braided hair and purple glasses is bent over a notebook with a character sheet for "Veri Truestone." There are various dice around her, a rainbow set, a ceramic set, some resin sets and two metal dice in a tiny glass jar. There is a dice vault with rainbow colors, another with wood burning of a map, and then a dice bag with purple fabric. The dice are from Heartbeat Dice, Die Hard Dice, and Everything Dice. The rainbow vault is from Heartbeat Dice, and the map vault is from Deven Rue. The dice bag is from Tea & Tails. The rolling trays are from Wyrmwood Gaming and Die Hard Dice. And the book is the Adventure Journal from Table Titans.
Photo courtesy the author.
[image: Woman with braided hair and purple glasses is bent over a notebook with a 
character sheet for "Veri Truestone." There are various dice around her, a rainbow set, a ceramic set,
some resin sets and two metal dice in a tiny glass jar. There is a dice vault with rainbow colors,
another with wood burning of a map, and then a dice bag with purple fabric.]

I didn’t know I was Autistic when I started playing Shadowrun, a table top role playing game. My boyfriend at the time was playing, and I overheard a couple of sessions where they seemed to be telling a collaborative story—and I never heard any arguments or weird pauses, which is how most of my social interactions went at the time. So I asked a lot of questions: 

Like, you all agree to the same rules? 

Yes, he tells me, it’s all in this book. 

A book I can just buy and read? 

Yes, he said. 

So I asked, you all tell this story, like together? And he tells me well there’s someone who runs the game, so they like, decide ahead of time what we do, like which adventure, etc. And I was hooked. 

(I am paraphrasing this human for the record because this was over a decade ago, so cut me some slack please? I only have a short term memory for spitting out exactly who said what. :)) 

Ahem, back to this game. 

I begged to be in. BEGGED. To be in the game. I wanted to play so badly, here was a built-in friend group. With agreed upon rules of engagement. With prescribed social situations I could LITERALLY study for. Sign me up.

Now again, I was undiagnosed as autistic, so most of these thoughts were unformed and nebulous. I didn’t really have the words to say that I had no close friends in the city I lived in, that I was anxious at parties and other social situations so I dreaded them—emphasis on the dreaded part—because of that awkward silence, which always happened. The awkward pause that rings out with such piercing clarity after I say something. And all I know is I said something wrong. Because no one will actually explain what I did. 

All I knew was this game had rules, and it was social, and I wanted to do it. 

They let me in. It was amazing. 

Then I moved away, for reasons I will not go into here, and it looked like I wouldn’t have a game again. Until someone invited me to a Pathfinders game—and I immediately agreed. And I learned a lot. And then I moved again. 

It was some years before I got up the courage to actually run my own game. I was diagnosed as autistic by that point, and as a result I was constantly thinking I shouldn’t do this, someone socially competent should run the game, what would I bring to the game? And I decided, well, organization, for one. Organizing a group of people to play a game was something I’d had practice with, albeit on a less regular basis. 

I am of course referring to what I did when my psychiatrist—the one who diagnosed me with autism—said I should try to engage with more than one person (not someone I lived with) once a week, and more than two people once a month. And I said, how the heck am I supposed to do that exactly, and he said, well you like playing board games. Try that. 

And he was right. Board games have rules. They have a beginning, a middle, and an end. And then people leave. (Usually.) 

For me, board games were glorious. I learned about being a poor loser. I learned about being a poor winner. I learned that sometimes people want to play a different game than you have planned. I learned that, sometimes, people don’t show up. I learned how to schedule enough people to play a game. And no, I didn’t learn any of this in a school environment, or a working environment, and sure I was often confused by how people reacted to my reactions, and why I didn’t have friends. But given a loose structure—I learned. 

So when I decided to run my own Shadowrun game, these learned organization skills were what I thought I could bring to the game. I completely skipped over storytelling, despite years of people telling me I should write a book (haha), or a play, or a movie. Despite years of me writing actual (unpublished) books. I was focused on the prescribed social interactions, with a set schedule, and rules. 

Glorious rules, that we would all follow. They would all agree to follow them, forever. 

All I would have to negotiate on my own was reminding them about the game, them getting into the house, hosting them, and then them leaving again. And most of those guidelines I could get from movies, and with careful data collection over time, I could figure out that one person always left immediately after the game but doesn’t hate me, another person is going to hang out forever so I need a clear signal when I need to go to bed, and a third person will only ever bring their own drinks, also not because they hate me. 

It was a win. I found a place where I could be myself, my pedantic, rules-driven, storytelling-obsessed self. 

I have to say, I am not great at running Shadowrun. It’s too crunchy. It took a huge amount of work for me to prepare it, and if anything did not go as planned during the game, I really struggled to course correct, which made for some clunky storytelling. I thought it was all because of the mechanics, too many dice, too much lore I couldn’t comfortably adapt in my head because of the Rules I have in there rattling around. 

I switched to Dungeons and Dragons (DnD) a bit after that. And…I overplanned. I sat down and planned for hours before every game, sometimes longer than actual game play. And I could never remember all of the rules, which used to frustrate me greatly. But I had super patient people playing with me, who knew my quirks at that point after years of putting up with my board games regimen. So they were patient as I learned how to run a game. 

And heck, did I learn. And here’s the thing: what I learned in games, I could use in real life. It took me a long time to figure this out, but nowadays if someone tells me they are a game master (GM), or the storyteller for a game, I find I can ask a couple of simple questions and really get on the same page as them. Because of that built in structure. Though this can be both good and bad. 

For example, if you are talking to someone who plays these kinds of games, and you ask them what they think about the orc issue, or whether they like the new racial rules, you can see where they might be on racism. Or if you ask someone if they like session 0’s and safety tools—you can usually tell how amenable they are to being inclusive and encouraging safe spaces. 

Or if you ask a GM how they keep their adventurers moving in the right direction—are they the kind of GM who must have a map, must plan out the story in advance and can not deviate from it, or is an improv GM? This usually tells me how much direction an individual might need, how well they would do at leading a team or running a project in my actual real day job, the one I get paid for and has nothing to do with games and requires heaps of very tricky social interactions, and so I have a cheat sheet. 

You know where I didn’t learn how to figure people out like that? Anywhere that was not a game. Not in previous jobs, not in books, not in school. I learned these life skills using a table top role playing game (TTRPG), purely by accident.

I slowly worked my way from a Over Prep GM to an Improv GM, meaning I used to spend heckin time building maps (love/hate relationship right there) and plotting story lines or modifying modules (I am absolutely incapable of playing modules as written). Now as an Improv GM, I mostly make everything up on the spot and I don’t use maps, I use Theater of the Mind—meaning I describe everything instead of using a map for positioning. 

There are benefits to all ways of running a game, and I am not here to tell you which one is best. You do you, my friends. What I am here to say is, learning to be an Improv GM has made me a better manager in my real day job, has taught me coping skills for when things change suddenly, and has allowed me to trust my inner storyteller as a real life skill, not some little hobby I keep to myself because it isn’t applicable to real life. 

Being a skilled Improv GM means all of the watching and mimicking I do to fit into everyday life is useful, and I can see how it’s useful instead of feeling like I am cheating. It means the research I do casually to understand why people do what they do has an outlet that is not harmful. I do not practice unregistered psychology on my friends—but I do tell fascinating stories with interesting puzzles. It means all of my quirks and brain Rules have a place to exist comfortably. 

And, yeah, a part of me still thinks I have tricked these people into playing games with me, and are they really my friend, what is a friend anyway. But mostly I am thinking about the next story I can tell, and tell collaboratively. I am wondering what frame I can sketch out so my friends and I can fill it in. What joy can I bring to them with different puzzles, or items, or the other non-player characters in the game. What kind of story can I tell with each group I run a game with. 

And I create safe spaces, which is true joy for me. As an autistic, nowhere is safe, because most of society relies on intuition and unspoken rules and what I semi-affectionately call Neurotypical Bullshit. There is rampant racism, classism, and ableism out there and it is HARD to navigate as a neurodivergent. I don’t know everything and I make mistakes, but in my games, I build in ways to give polite and constructive feedback. Sometimes I am the first person who has been able to explain that concept to someone, and they learn a useful life skill. Often I learn things from my players, all in the guise of telling a story, playing a game. It is wonderful. It is comforting. It creates balance in my life. 

TTRPG’s didn’t save me, and they aren’t the only reason I am the way I am. They are a component in my history, and my present, and probably my future—but they are an important one. 

Take this away with you: collaborative storytelling can be a very rewarding social situation when there are safe spaces to agree on rules and parameters for that social engagement. If you have an Autistic in your games, try setting some really clear expectations and create unambiguous ways of giving and receiving feedback. 

If you are an Autistic: you can do this. No one ever told me I could run a game (except my husband) and I didn’t see myself represented in games for the longest time. I am here to tell you: you are allowed to play this game. You are allowed to run this game. You will make mistakes. But done correctly, this is a place to make lower-risk mistakes, and learn from them. And heck is it fun. 

No one made me do this, although there are therapeutic groups that use these games to help with social skills, and I support them as long as there is no force or negative manipulation involved, and it truly is a game. I figured everything out on my own over time—I knew my social skills weren’t what neurotypcial people expected; the dreaded awkward pause still haunts me to this day—and I eventually realized running games was helping me with this in a low risk environment. I had good friends, a safe place, and a structure, and I thrived. 

I think all of this is something not a lot of non-autistic people realize about autistic people like me. When we have good people, safe spaces, and a structure around whatever we truly enjoy, we can thrive so well. And we can drive that journey ourselves; the independence is wonderful. 

And if you look at it right, technically I have a lot of support doing my GMing, and a lot of accommodations. And I am excellent at it. But no one really questions that support or those accommodations because I have integrated it into the game environment. What more could we do as humans if we had more of those spaces, places where we were comfortable, not forced to be someone else, not forced to conform to neurotypical expectations? 

That is what I am telling you. I use TTRPG’s as a way to build an environment I feel safe in, that I can practice and play in, and that I can thrive in. This should be an option for other autistics, and even if maybe they’ll need a little help to get started, that is okay. I want to repeat that mistakes happen—you’re a human, mistakes happen, to everyone—and it’s what you do with that learning experience that matters. 

Oh and did I mention? You find the right group, the right game, the right structure- and it is heckin fun.

Tuesday, August 10, 2021

Wouldn't You Want to Know If Your Autistic Child Was Being Harmed?

Outline of an adult holding the hand of a child while they stand side-by-side. The adult is on the left and the child is on the right. It is ambiguous if we are viewing their front or back side. Both are surround by a yellow box with a white gradient towards the upper right corner and with rounded corners.
Created by Ezra Katz, Wikimedia Commons / Creative Commons
[image: Simplified all-black figures of an adult holding the hand of a child
while they stand side-by-side, on a yellow background.]

Autistic Science Person
twitter.com/AutSciPerson

I am exhausted by non-autistic parents who:

  1. Ignore the experience of autistic people who went through ABA 
  2. Say ABA "was never like that" for their child 
  3. Assume their child cannot be traumatized long-term because they "seem happy" 
  4. Think we're saying they're trash parents

You can't speak for your kid. You can't know what they think, what they feel, and what may have caused them long-term trauma that they'll have to work through.

You. Can't. Know. That. Right. Now.

That's not how mental health effects from masking and from sensory invalidation work.

And then I try to remember that when I'm talking to one parent who is speaking over their kid and their experience, five or ten parents are reading that exchange and may be learning from it.

But, honestly it is exhausting to be told as an autistic person that you are somehow vilifying non-autistic parents by letting them know through blog posts, research articles, and primary sources, that ABA is abuse.

I know this might be surprising but we autistics care about autistic kids.

That is, truly, the only reason why I continue to have conversations with parents who are in denial, who gaslight autistic experiences, and claim that we're calling them bad parents.

All we want you to do is just get info to help your kid. Not to insult or vilify you.

Autistic adults are constantly attacked through misguided feelings of non-autistic people who were told to get this therapy for their kid, and who are now having to face feelings of failure or of betraying their kid because we autistic adults tell them those therapies are actually harmful to autistic kids like we were. And while some parents do face their feelings, others lash out at us with words—and that's honestly horrible.

I hate that autistic adults have to put up with non-autistic parents' feelings of inadequacy or doubt or shame or failure. These parents should care about and welcome our input, not harass us and call us bullies. Where is the empathy and compassion so boasted by non-autistic people?

Sometimes these interactions with parents ruin my whole day. It just feels so inconsiderate but mostly— so illogical! Wouldn't you want to know if a therapy your child was in was harmful to them? Wouldn't you want to know if your child was in conversion therapy?

Wouldn't you?!

I would never not want to know something that could prevent my, or someone else's, pain. I would never not want to know how to help someone I love! It puts me in an executive function loop of why? Why would you want to remain ignorant about this? Why would you not investigate?!

Why not, just to make sure, would you want to sit in on the therapy or take more precautions, or reduce the hours and just see how it goes? Why would you not want that information and have your kid continue something Which Has The Possibility Of Harming Them? Shouldn't just the possibility of harm to your child be enough to want to listen?

I truly do not know why some parents don't want to listen to autistic adults. I truly, truly don't know. There is so much good autism information for parents from autistic adults, and so much of it is freely available, and yet the parents choose not to know. 

I will never know why.

----

Article based on the author's recent Twitter thread.

Monday, August 9, 2021

Two Autistics' Experiences With Low-Gain Hearing Aids For Auditory Processing Problems

Photo of a pair of blue insertable low-gain hearing aids lying on a dark brown wood-grain surface.
Photo courtesy Naomi M.
[image: Photo of a pair of blue insertable low-gain hearing aids 
lying on a dark brown wood-grain surface.]

Naomi M. and endever*
anotherqueerautistic.wordpress.com

Summary/tl;dr

  • Specially programmed low-gain hearing aids can help people with auditory processing problems, even when they don’t have other difficulty hearing. They work by enhancing the sounds that help people understand spoken words. They can also make sounds less painful.
  • Auditory processing problems make it difficult to understand spoken words, especially when there's background noise. It's like your brain has difficulty hearing correctly. Many autistic people have auditory processing problems, as do some non-autistic people.
  • The authors of this post both tried specially programmed hearing aids to help with auditory processing issues and with sound sensitivity. We have found them life-changing.
  • In this post, we give background on auditory processing issues and hearing aids, and also share our personal experiences.

Important Note

This article describes our experiences as two specific people with auditory processing difficulties who are otherwise hearing. Our experiences may not generalize to any other individual person with auditory processing difficulties. We also caution readers against generalizing our experiences with hearing aids to those of d/Deaf/hard-of-hearing people, including those who also have an auditory processing disorder. Although we sometimes have overlapping experiences, there are ways our experiences often differ, and we can’t speak for other people. 

The authors of this post both strongly believe that d/Deaf/hard-of-hearing people and/or disabled people deserve to be able to choose which accessibility options we use, and when. For us, those include hearing aids, but this is not true of everyone. 

What are auditory processing issues?

Auditory processing refers to how our brains make sense of the sounds we hear. When someone’s brain can’t effectively process sounds, it can make it very difficult to understand spoken words, especially when there’s background noise!

Auditory processing disorders are more common in some neurodivergent people—for example, autistic people—although non-autistic people can have auditory processing disorders too. 

Some people with auditory processing disorders are also d/Deaf or hard-of-hearing. Others have normal hearing, but because of auditory processing difficulties, have experiences that overlap with those of d/Deaf/hard-of-hearing people. (You can read some discussion in this Twitter thread on overlap between the APD and hard-of-hearing communities.)

Standard hearing tests rarely detect auditory processing problems. They check for ability to hear words in a quiet environment but usually don’t check for difficulty hearing sentences in background noise, understanding rapid speech, or other tasks that are difficult for people with auditory processing issues.

It’s difficult to find providers who know how to test for auditory processing disorders effectively, and many people with diagnosable auditory processing problems (which include many autistic people) never receive a diagnosis or accommodations. In this article, we use “auditory processing disorder” and “auditory processing issues / problems / difficulties” interchangeably, partially for that reason.

Auditory processing issues impact interactions at work, school, home, and out in the community. Understanding other people is harder and more tiring, and it takes up time and energy that we need to come up with responses at the speed others expect. 

Our Experiences With Auditory Processing Issues

endever*: Before hearing aids I was missing a lot of pieces of conversations with friends, especially in background noise. I avoided any media without captions, and had trouble following audiobooks and using the phone. 

Another huge issue for me was the fatigue of auditory processing and the difficulty of focusing on auditory input, even in circumstances when I did hear someone correctly.

Naomi: Auditory processing wears me down. It takes longer, and it’s difficult for me to participate in conversations—especially when there’s background noise—because processing takes up time I need to plan my response. It can be very fatiguing. 

I also experience auditory pain, especially in response to some high frequencies, and find multiple or complex sounds disorienting (simultaneous conversations, busy spaces). 

Why Hearing Aids? Don’t They Just Make Sounds Louder?

Most hearing aids do! However, low-gain hearing aids can be used to enhance the sounds that make words easier to distinguish—without making EVERYTHING louder. They are regular hearing aids that are specially programmed by a knowledgeable audiologist to enhance speech while making loud sounds quieter and reducing background noise. 

Low-gain hearing aids can also be used to help with issues such as sound sensitivity, tinnitus, and misophonia (where some sounds, like chewing, are aversive/painful). 

If you’re looking into low-gain hearing aids, confirm that any audiologist you plan to see has experience with programming low-gain hearing aids for auditory processing difficulties. The hearing aids need to be carefully programmed to support an individual’s auditory processing profile. Many audiologists are unfamiliar with using low-gain hearing aids for auditory processing difficulties and don’t have relevant experience (although there has been some published research). 

Do They Really Help? What With?

Our audiologist says most of her clients report benefit from using low-gain hearing aids to support auditory processing. Both authors of this post found they helped significantly in multiple areas, including in-person spoken conversations, videoconferences, phone calls, and media, as well as helping with auditory pain/sensitivity.

Conversations

endever*: One of the first things I noticed was a very strong sensation that I was somehow magically hearing people say things before my eyes saw their mouths make the right movements—I think I hadn’t previously realized the extent to which I was previously processing on a delay. Another thing I saw early on was that S-spectrum sounds were more noticeable than before, which makes sense as it’s those sounds I was in speech therapy for

Going out to brunch with my friends before quarantine was markedly improved by using the hearing aids’ directional/”blinders” setting. I was acutely aware that it was taking less effort than usual to clue into my friends’ voices. 

Now in a day treatment program, I’m finding that distinguishing words over lower background noise is easier than it used to be, although when I am between multiple conversations competing at equal volumes it is still difficult to focus on one voice at a time. I attribute a large portion of my success at the program (in terms of tolerating the long days, coping with little alone time, and not ending up in meltdown/shutdown) to the fact that auditory processing takes less cognitive effort than it would have a couple years ago.

Naomi: They absolutely help! Talking with other people was immediately much easier and less tiring. In a quiet room or on a relatively quiet walk outside, it feels like spoken words now go into my brain with the same sense of ease as written words do. They’re not perfect in all circumstances, and I still have difficulty hearing people clearly in areas with bad acoustics. 

Some sounds were tinny at first, but not disorienting or uncomfortable. The tinniness went away over a few weeks as my brain adjusted. 

Auditory Pain/Sensitivity

Sufficiently high-tech hearing aids can help with pain and sensitivity in three ways. They can compress loudness, by making some loud sounds quieter. If specific frequencies are painful, they can compress those frequencies, raising or lowering their pitch. They can also use pink noise (related to white noise) to help desensitize hearing over time and/or mask tinnitus. 

endever*: They help me with background noise both on normal setting and on pink noise. On normal they seem to filter it out somewhat. It is hard to describe how the filtering feels in the moment, but basically I just feel less aggravated by the end of the day when I’ve been wearing my hearing aids

As for pink noise, transit has been going much better now that I have hearing aids. Pink noise doesn’t feel quite like relief like earplugs do, but the situation doesn’t feel distressing the way it used to either. I also use pink noise for things like studying in an environment that is already relatively quiet (but perhaps with annoying mini-sounds like the refrigerator humming).

Naomi: They make a huge difference for my auditory pain. It’s been worse in the past, but I didn’t realize how painful sounds still were until they hurt less. My hearing aids both make loud sounds less painful and compress specific high frequencies that hurt, like crackling chip bags. I used to wear noise-canceling headphones most of the time; now I rarely do.

One major and surprising advantage: I automatically tune out some kinds of background noise now, like window fans or people talking quietly in the hall. 

Videoconferences and Phone Calls

endever*: I definitely don’t miss what people are saying in video calls as much as I used to! At this point it’s easier to rely on the hearing aids than on autocaptions (the latter tends to throw me completely off when they get even a little bit wrong). I still think many Zoom meetings could be emails, but I’m not as annoyed by them anymore.

I used to have trouble hearing voicemails, but that’s going better now. I still avoid picking up the phone when it rings spontaneously even if I might be able to speak just then, but I’m willing to do pre-set phone appointments now if IP text relay isn’t working. (I usually use text relay especially for expressive communication, but with hearing aids I can just use my communication device on speakerphone.)

Naomi: My post-videochat fatigue and irritation have dropped immensely. I still have difficulty understanding what people are saying sometimes, and I still turn on autocaptioning when available, but I no longer have an ongoing sensation of "why are you doing this to me and could we just get this over with as fast as possible," and I’m not wiped out afterward.

Phone calls are also easier. I usually connect my hearing aids to my phone using bluetooth, but can take calls without connecting them, although the phone squishes my ear against the hearing aid a little. 

Media (Music, TV, Etc.)

endever*: The first thing that stood out to me about this was that I actually understand unfamiliar lyrics now! It’s completely mind-boggling; music can bring sheer joy. 

My first reaction to listening to audiobooks via Bluetooth was that it feels like the narrator is speaking into my brain itself whereas usually there’s a sensation of distance. 

For TV shows I notice it takes less attention to take in more content—even when I’m distracted on mental tangents or simultaneously skimming social media, when I do clue back in I haven’t missed as much of the story. I now often don’t notice whether captions are turned on or not, it just doesn’t occur to me

After having done several experiments of watching shows with hearing aids and then without them, the biggest difference is always the immediacy (both temporally and spatially) of the dialogue. Before the trial I had no idea my brain was lagging behind so much.

Naomi: Music sounds good, and it’s easier to make out lyrics. Movies and television are easier to focus on, and more interesting to watch

I also watch more YouTube videos now, and listen to podcasts. I don’t find myself rapidly zoning out anymore—I can listen, pay attention, and summarize the information afterward. I previously thought my auditory attention problems were ADHD-related (I have ADHD as well) but I now think auditory processing difficulties play a big role.

However, I do still want (and often need) handouts available to accompany lectures, and still prefer to get most information in written format

Are The Hearing Aids Comfortable to Wear?

endever*: Mine are physically comfortable, although the pile-up of glasses/hearing aids/mask straps has been a bit much. I sometimes wear light fabric covers on my aids that are attached to cords that clip to my shirt if I’m worried about losing them.

I also like to decorate mine! I know the relative invisibility is a pro for many, but I happily add colorful tube coils and so on in the name of cyborg pride. 

Naomi: I find my hearing aids physically comfortable to the point of being unnoticeable, even with glasses. They’re also not particularly visible, especially with my hair down. 

Are Hearing Aids for Auditory Processing Issues Expensive?

Both authors of this post tried hearing aids for auditory processing issues via a nearly-free (postage + damage deposit) six-week trial offered by an audiologist who did not require a previous auditory processing disorder diagnosis. She programmed the hearing aids remotely via a device that plugs into a Windows computer. We both ultimately chose to purchase permanent hearing aids. 

Permanent hearing aids are expensive. The high-tech ones needed for auditory processing issues are miniature computers, and run $5000-8000 including aftercare (for both ears). In the U.S., insurance rarely covers low-gain hearing aids like this. The audiology office we worked with found only about 15-20% of insurances would provide any reimbursement at all. 

This isn’t unique to hearing aids for auditory processing issues. Many d/Deaf/hard-of-hearing folks who use hearing aids face similar financial barriers. 

This is systemic audism. Everyone with hearing differences deserves appropriate support, including assistive technology if they choose

Auditory processing issues can affect quality of life, school success, employment, and mental health. We hope that in the future insurance companies become more willing to cover effective supports like low-gain hearing aids, instead of more expensive, ineffective treatments like abusive ABA therapy for autistic children.

Summary

endever*: All the changes I’ve noticed now that I have hearing aids have made them absolutely worthwhile for me to invest in. They’ll need replacing eventually, but now that I know how much they help I can prioritize saving ahead in my low-income budget. 

Naomi: Overall, the hearing aids have been hugely helpful. It's easier to participate in conversations and less tiring. I no longer feel like someone's spraying me with a hose full of confusion and painful sounds—I’m just interacting! It’s also much easier to be around background noise

Caveats

We want to close with two important caveats. 

First, hearing aids shouldn’t be used as a reason to deny accommodations like captions, information presented in written format, a quiet place to study or work, or respecting someone’s request to face them while speaking. Hearing aids help us hugely, but aren’t perfect and aren’t accessible to many people.

Second, if someone doesn’t want to wear hearing aids, they shouldn’t be made to—even if they’re children, even if it’s inconvenient for others, even if their reason for not wanting to wear them is cosmetic, even if they’re autistic or intellectually disabled or otherwise disabled, even if they’re not able to refuse consent out loud or in writing and can only decline to wear hearing aids by taking them off.

It can be worth checking whether physical or auditory discomfort could be causing problems—but someone who doesn’t want to investigate that shouldn’t be forced to either. It’s THEIR body.