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Friday, December 31, 2021

Have Faith In Your Children With Intellectual Disabilities

Ivanova Smith, a Lavtian American person with short brown hair and glasses, out in the community at a restaurant table with two drinks with lemon slices and straws in them.
Ivanova Smith, out in the community
[image: Ivanova Smith, a Lavtian American person with short
brown hair and glasses, at a restaurant table with two glasses
with brown beverages, lemon slices, and straws in them.]
The October 2021 meeting of the Interagency Autism Coordinating Committee (IACC) featured some remarkable comments from its autistic members, including Sam Crane, Lindsey Nebeker, and Morénike Giwa Onaiwu—as well as public comments from ASAN's Julia Bascom and our own editor Shannon Rosa, about the rights and needs of autistic people with intellectual and mental health disabilities. The transcript of the meeting was published only recently, and the entire document is worth your attention.

Even so, we'd like to draw your attention to the comments of Ivanova Smith, an autistic advocate with intellectual disability who is the parent of two small children as well as a a newly seated member of the IACC. Ivanova is passionate about the rights of people with intellectual disabilities (ID) to grow up and participate in their communities—and is a forceful, living example of how people with ID can thrive, given the right supports and understanding. 

We are grateful to Ivan for giving us permission to share their comments here. And we hope you carry the urgency and optimism of their message into the new year.

----


This is Ivanova Smith. I just want to say I was institutionalized for five and a half years of my life. I was nonspeaking. I did not understand many things. I did not understand even my own name. 

It was not until I was started to be taught things and that people really did one-on-one support with me that I started to learn things, and I started to gain abilities in being able to be in my community. It is because people did not think that I could learn. 

This idea that people with intellectual disabilities cannot learn is a very dangerous idea and it leads to us being harmed. I think it is important to autistics with intellectual disabilities that we get the support to learn. And we need to get teachers equipped. 

We need to help parents teach their children that we grow just like anyone else. We should be given a chance and the dignity of risk to learn how to swim, to learn how to cross the street. If we need support, if we need one-on-one support to cross the street, we should be given that support to cross the street. We shouldn’t be shut away in an institution just because we are struggling to learn something. 

I struggled to read, and the school said you will never learn how to read. But my mother, she said no, I will not believe that and my mother sat in the hallway with me every day in the school and taught me to read, to use sign language, to use visuals. She used a different method that the teachers did not use. I learned how to read. It made it so I could have access to academic courses. 

But that is not fair [that] people who can’t learn to read to not be given that access, and to be denied that access to have to fight to be able to have access that anybody else wants. It is not right. Just because of an IQ score, we need to stop that and we need to look at people as human beings who want to learn and we need to make sure that everyone has the right to learn and that we all have the right to grow up. 

We are not mentally children. Autistics with intellectual disabilities are not mentally children. We grow up just like everyone else, and we need to learn how to be safe and we need to learn what – if we want to have one of these devices, the GPS [tracking] devices, we should be taught informed consent. We should be told about what the device does and what we want it to do and what we do not want it to do.

And if we want to go explore a community, we should just have somebody help us and support us in the community to explore. If I want to go on a walk near a river, but I need support, have somebody go with me and help me explore. 

Do not just take away that right for me to explore. That is sad. That does not help an autistic person feel like they are valuable or allowed in their community. We should all be allowed in our community. If we need extra support for that then we should be given it because that is our constitutional right. Thank you.

Thursday, December 23, 2021

HEARD: Supporting Black-Led, Disabled-Led, Cross-Disability Justice

The HEARD logo, with aqua-colored hands signing the letters "HEARD" against a white background. Superimposed on the hands are black block letters spelling "HEARD". A white scale symbolizing justice is superimposed on the "A" in the center.
[image: The HEARD logo, with aqua-colored hands signing the letters "HEARD" against a white background. Superimposed on the hands are black block letters spelling "HEARD". A white scale symbolizing justice is superimposed on the "A" in the center.]

Kerima Çevik

I have spent a good part of my life concerned about autistic adults who are survivors of catastrophic encounters with our criminal justice system. People like Arnaldo Rios Soto, Neli Latson, and Darius McCollum. Neli Latson is finally free but paid a bitter cost for the crime of sitting in front of his local library. Deaf and disabled folks trapped within systems they should not have been part of in the first place have few options and precious little help unless their stories become part of our news cycle. 
 
I wanted to be part of any effort to help them. So a few months ago, I joined the board of HEARD, a Black-led and disabled-led, cross-disability abolitionist organization. With practically no funding, HEARD has been doing vital work that no one else does.
  • HEARD advocates directly for incarcerated Deaf and disabled people and is often the only source of culturally and linguistically relevant services for Deaf people in prisons at all.
  • They also educate much larger, better-funded organizations and 
  • Facilitate communication between them and Deaf-disabled incarcerated people, which has led to a number of important and successful class-action lawsuits that never would have been brought otherwise.
  • They also fight hard against wrongful convictions and 
  • Use whatever tools they can to bring folks homeand 
  • Then to support them and their families once they do come home.
  • One of the exciting new programs HEARD is developing is a comprehensive healing justice reentry program for deaf/disabled people. It is a program that is trauma-informed and culturally/linguistically appropriate.  It includes training mental health providers on how to work effectively with formerly incarcerated people, providing social support, lending out tech and providing access to the internet, and helping people become peer educators, community interpreters, and facilitators.
Moreover, HEARD is addressing the reality that most political education resources are not accessible for people who are Deaf or who carry intellectual or developmental disability labels. HEARD has been changing that, developing resources about prison abolition by and for deaf/disabled people.

As you plan your end-of-year giving, I hope that you will give as generously as you can to HEARD. I don't think HEARD has gotten anywhere near enough recognition or funding for its work, and it's incredible how much it has done nonetheless--I have no doubt with more resources it will have even more of an impact. With our help, it could reach so many more deaf and disabled people in prison or returning home. I have a personal goal of raising at least $5,000 for HEARD by the end of the year and plan to give $1000 myself. Whether or not you can give, I hope you will also follow HEARD on social media and signal-boost their work.

Thank you, stay safe and healthy throughout this holiday season!

Wednesday, December 15, 2021

Circular Reasoning and The Question of Profound Quadrilaterality:

A Statement on the Nature of Shapes by an Autistic Adult.

Bev Harp
www.facebook.com/squawkers.mccaw

Click image to enlarge

An infographic titled Circular reasoning and the question of profound quadrilaterality. A statement on the nature of shapes by an autistic adult.  Image of blue (regular) rectangle. Subtitle: This is a quadrilateral. Text: It is called a quadrilateral because it has four sides. That is all that's required. This one also happens to be a rectangle. Four sides = quadrilateral + 4 right angles = rectangle.  Title: These are also quadrilaterals. Images of a parallelogram, square, and trapezoid with definitions. Parallelogram: four sides = quadrilateral + opposite sides parallel. Square: four sides = quadrilateral + 4 equal sides and 4 right angles = square. Trapezoid: four sides = quadrilateral + 2 sides parallel = trapezoid.  Subtitle: Quadrilaterals. Images of parallelogram, rectangle, trapezoid, and square. Text: Each of these shapes is a quadrilateral. No one shape here is more quadrilateral than the others. Meeting other conditions does not change the shape's quadrilateralness.  No subtitle. You might think that the square better captures the essence of quadrilaterality than the trapezoid. You might even think of the square as "profoundly quadrilateral." But you would be wrong.  Subtitle: There is a group of shapes who would like to change the definition of quadrilateral. Image of 5 circles and a trapezoid. One circle is saying, "That one isn't even rectangular!" The trapezoid is thinking, "Circular logic?"  Subtitle: This rectangle represents an autistic person. Text: A person is called autistic when they have social/communication differences and a need for sameness or repetition to a degree that affects major life activities. Image of a rectangle with the word "autistic."  Subtitle: These quadrilaterals also represent autistic people. Image shows a parallelogram, square and trapezoid. The parallelogram says "autistic + ADHD + anxiety + gastrointestinal disorder. The square says "autistic + intellectual disability + epilepsy. The trapezoid says "autistic + depression + PTSD. Text: Each person has co-occurring conditions. These vary from one autistic person to another. The co-occurring conditions are not part of the definition of autism. They cannot make a person more or less autistic.  Subtitle: Did you know? Text: Accurate definitions and logic are access needs for many of us. I would be very happy to stop arguing about the definition of autism, but I cannot until my access needs are met. Think of it as an accommodation if you must.  Disabled people deserve access to the supports they need, whether due to autism or to co-occurring conditions. But squares are not more quadrilateral than trapezoids. There is no such thing as "profound autism."


Image description: An infographic titled Circular reasoning and the question of profound quadrilaterality. A statement on the nature of shapes by an autistic adult.

Image of blue (regular) rectangle. Subtitle: This is a quadrilateral. Text: It is called a quadrilateral because it has four sides. That is all that's required. This one also happens to be a rectangle. Four sides = quadrilateral + 4 right angles = rectangle.

Title: These are also quadrilaterals. Images of a parallelogram, square, and trapezoid with definitions. Parallelogram: four sides = quadrilateral + opposite sides parallel. Square: four sides = quadrilateral + 4 equal sides and 4 right angles = square. Trapezoid: four sides = quadrilateral + 2 sides parallel = trapezoid.

Subtitle: Quadrilaterals. Images of parallelogram, rectangle, trapezoid, and square. Text: Each of these shapes is a quadrilateral. No one shape here is more quadrilateral than the others. Meeting other conditions does not change the shape's quadrilateralness.

No subtitle. You might think that the square better captures the essence of quadrilaterality than the trapezoid. You might even think of the square as "profoundly quadrilateral." But you would be wrong.

Subtitle: There is a group of shapes who would like to change the definition of quadrilateral. Image of 5 circles and a trapezoid. One circle is saying, "That one isn't even rectangular!" The trapezoid is thinking, "Circular logic?"

Subtitle: This rectangle represents an autistic person. Text: A person is called autistic when they have social/communication differences and a need for sameness or repetition to a degree that affects major life activities. Image of a rectangle with the word "autistic."

Subtitle: These quadrilaterals also represent autistic people. Image shows a parallelogram, square and trapezoid. The parallelogram says "autistic + ADHD + anxiety + gastrointestinal disorder. The square says "autistic + intellectual disability + epilepsy. The trapezoid says "autistic + depression + PTSD. Text: Each person has co-occurring conditions. These vary from one autistic person to another. The co-occurring conditions are not part of the definition of autism. They cannot make a person more or less autistic.

Subtitle: Did you know? Text: Accurate definitions and logic are access needs for many of us. I would be very happy to stop arguing about the definition of autism, but I cannot until my access needs are met. Think of it as an accommodation if you must.

Disabled people deserve access to the supports they need, whether due to autism or to co-occurring conditions. But squares are not more quadrilateral than trapezoids. There is no such thing as "profound autism."

Wednesday, December 8, 2021

Creating a "Profound Autism" Category Is Segregation, Not Progress

Shannon Rosa
twitter.com/shannonrosa

White dude seen from behind while hiking at Vasquez Rocks, home of the Gorn.
Photo courtesy the author
[image: White dude seen from behind while hiking at
California's Vasquez Rocks, famed for being the home of the Gorn
.]
All parents of autistic children struggle to give our children the lives they deserve, but we struggle in different ways because our children’s support needs vary so widely. I understand this complexity at a deeply personal level, as my autistic son requires full-time care—and I also get it professionally, as an editor and community manager at Thinking Person’s Guide to Autism, where a dizzying range of autistic experiences passes through our forums. Among other learned truisms, I can tell you that the recently proposed term “profound autism” is not very useful to parents like me, or autistic people like my son. What parents of high-support autistic kids like me need instead is more awareness of and connection with the other communities who understand our kids’ high-support traits, like the disability and non-speaking communities—in addition to the wider autistic community.

It’s not surprising that parents are seeking to segregate their high-support autistic children. Parents like me often aren’t given good information about the disability diversity within the autism community, or how to support our autistic children who have speech or intellectual disabilities on top of their autism. Instead of feeling supported by the autism community, we often feel isolated when our autistic kids are all lumped together—even though our kids’ autism-only disabilities, like a need for consistency and sensory sensitivities, are indeed very similar. We often find ourselves looking at the general autism community, and getting frustrated because it includes and is led by people we perceive as having lower support needs than our own children (even though since every autistic person qualifies as disabled, every autistic person needs some kind of support and accommodations—and this is true even if a person is able to talk, go to a mainstream school, or work in a regular job). We might falsely believe that inclusive autism spaces can’t possibly serve us. 

Also, when parents believe “profound” autism is a separate condition, their children’s illnesses, or common co-occurring conditions like migraines or Tourettes or anxiety can get overlooked, unaddressed, or written off as “behavior” or just “severe autism.” The parents get frustrated when approaches like Applied Behavioral Analysis, which ignores autistic needs in favor of conditioning “normal” behaviors, backfires. And because of the relentless negativity, fearmongering, and pseudoscience that seeps into media coverage of autism, “profound” autism communities are also often magnets for parents whose goal is to cure or treat autism, instead of understanding how to support an autistic child—especially if that child has other disabilities. And then when “nothing worked” because all of those parents' kids are "still autistic," and everyone is angry and feeling hopeless, the parents are left claiming that "no one" is addressing their “profoundly autistic” children’s support needs, so they need to create a separate category.

But if the parents of “profound” autistic kids would connect with all the communities that include their kids, like the disability and communication communities in addition to inclusive autism communities, they’d be so much better off. The non-autism disability communities, specifically, tend to be more oriented towards problem-solving for their kids’ rights and accommodations and medical needs. They get equally angry about the lack of support resources because there ARE a lack of support resources. But they also tend to view adults who share their children’s disabilities, and the value of their shared, lived experiences as the valuable resources they are, instead of rejecting crucial allies and supports.

Why is it so hard for parents of autistic children to understand which resources they need? One roadblock is a society that tends to view autism and disability as scary bad things, and see disabled people like our children as burdens. In addition, most mainstream autism resources were developed by professionals who haven’t gotten over the idea that disability is bad, or who aren't part of the autistic or disability community, and who didn't consult autistic people—so those resources tend to center on how to make autistic people easier for non-autistic people to live with, instead of focusing on autistic people's happiness and well-being. And since a family is usually only as happy as its least happy member, and since most families are not given information about helping autistic people be happy, this means too many families with autistic members are not happy ones.  

Parents who aren't themselves autistic or disabled and who rely on these mainstream autism resources may therefore have no guidance for viewing their children positively. They may not see their kids as who they are, but rather as what they aren’t. They won't have the lived context to teach their children self-acceptance or self-advocacy, which means their kids may not learn that they deserve and have the right to whatever accommodations they need. Again, these will not be happy families.

But if parents get their information about parenting autistic kids from the autistic community, they will find people who think that their kids are awesome, and deserve to be happy, and want their parents to feel the same way. The parents will learn about autism from people who had autistic childhoods. They can find out that the way their autistic child socializes is perfectly normal—for an autistic person—and that many social communication difficulties go both ways. They find out that the child's strong interests  can bring them deep joy, their repetitive movements can bring them peace, and their insistence on sameness can help them cope with an unpredictable world. They find out that things that non-autistic people consider "no big deal" are actually a very big deal for autistic people, like noises and flickering lights and consistency and processing delays and surprises. They learn to respect and work with the autistic child's communication style, especially if the child uses echolalia, scripting, or alternative communication methods like typing or iPad apps. They will find out that autistic people consider ABA therapy a form of torture, and that at the same time some types of speech therapy and occupational therapy can be crucial. 

When parents get information about their kids’ disabilities from the disability community, they will find people who think that their kids are awesome, and want their parents to feel the same way. They can also help parents understand that meaningful inclusion in school matters more than token mainstreaming without supports, that interdependence and being able to make choices matter more than becoming completely independent, and that being part of a community means increased personal safety while segregated living means increased personal peril.

If parents rely purely on the "profound" autism community, they are unlikely to find the resources their children need. So we need to spread the word that parents can get additional guidance from disability-centric organizations that also welcome autistic people, like Little Lobbyists, which focuses on children with complex medical disabilities; The ARC, which focuses on people with intellectual and developmental disabilities, or CommunicationFirst, which focuses on people with communication disabilities—in addition to autistic-led orgs like The Autistic Self-Advocacy Network, which advocates for autistic people of all abilities, and your autistic and non-autistic friends here at TPGA—all parents of high-support autistic children who are now taller than their mothers.

When parents find actually useful resources, the families and their children can be much happier. This doesn't guarantee that everything will be fixed! But that is because our society does not yet provide the benefits and resources to support autistic children and families properly, and also because parenting is hard, and because all children have the potential to require more supports than their parents had ever imagined—regardless of whether they are disabled. 

Saturday, December 4, 2021

An Autistic Passion for Fashion

Emma Seely-Katz
humanrepeller.com

I was diagnosed with Autism fairly late, at age 22. None of my loved ones were surprised. One thing that might have tipped them off is my longtime obsession with fashion and clothing, which I realized belatedly could fit into the paradigm of “special interest.” When I thought about it that way, it became apparent that being Autistic can give one a unique and valuable way of approaching fashion that I think deserves more exploration.

For someone with heightened sensitivity, clothing and accessories can make or break an entire day out. Not only do things like texture and fit have the potential to trigger or soothe, clothes and accessories can be chosen for their visually or kinetically stimulating properties, their ability to store necessary items close at hand, their ability to address light, sound, or scent sensitivities… The potential to use dressing to create a tiny bubble of comfort, like a suit of armor, is so exciting to me and I believe it can manifest in an interesting and unique sartorial sensibility. 

Autism is a highly relational state of being—interactions with other people can be daunting as someone with a different way of processing sensory input, but they provide me with, and then give me the opportunity to test out, tools I can use to expand my conception of the world. Fashion is a similarly relational endeavor, and I find it helpful to approach it as another tool with which I can mediate my experience of being alive. I use it not only to soothe myself but also to convey to others who I am and what is important to me. 

The following are some suggestions for clothes, accessories, and miscellaneous accoutrements that might be good fits for those with Autistic or other hypersensitivities. I am nonbinary and wear clothes designed for all genders, so this guide is designed from that perspective. I try to include some pieces that are financially accessible in my guides, but they are all just style suggestions and can easily be riffed upon at a thrift store! If you enjoy this article, you can check out more at humanrepeller.com where I’ve written posts on how to dress like specific anime characters, utilitarian clothing, first date outfits, and more.


TUBE TOP

Model wearing a dark gray long sleeved tube neck top and matching pants.
[image: Model wearing a dark gray long-sleeved
tube neck top and matching pants.]

For people who want the look of a high-necked top without the constriction around the neck of a typical turtleneck, this top would be perfect! Black Crane uses high-quality fabrics and this top will certainly treat your skin well. 

EARTHWORM SHIRT

Short-sleeved red plaid button-up shirt with multiple front pockets showed containing itmes like digging spades, pencils, and a small spray bottle.
[image: Short-sleeved red plaid button-up shirt with multiple front pockets
containing items like digging spades, pencils, and a small spray bottle.]

This 100% cotton shirt won’t irritate sensitive skin but will provide a truly awe-inspiring amount of storage spaces to keep things close at hand to keep tics and triggers at bay. I always need lip balm, chewing gum, a pen, and a glasses wipe within reach or I can plan on having a miserable day, and this sturdy, reinforced shirt won’t let me lose any of them through a frayed hole.

LAKE SHIRT

Gray button-up long sleeved shirt with long neck flaps tied in front of the model's throat.
[image: Black button-up long sleeved shirt with long neck flaps
tied in front of the model's throat.]

This shirt is made of soft, lightweight cotton voile, can be tied and untied in times of stress (it looks great both ways), and is black so stains are less of a concern, which is a huge point in my book when I’m considering a dress shirt. The unique silhouette will be an instant conversation starter and indicates an interest in fashion that could lead to some incredible talks with new acquaintances! 

CLOUD COAT

[image: Photo of a model wearing a black quilted cloud coat.]

This iridescent coat is made from beetled linen, a special treatment that makes the fabric more durable and water-resistant, great for those of us (myself definitely included) who hate the feeling of wet skin and want a light but striking layer to keep us dry. The sleeves can be cinched with ties or left to hang loose depending on what feels better to you.

EMERGENCY SLEEP HOODIE

[image: Model, seen from the back, wearing a black hoodie with a small
matching pillow attached to their shoulders by three metal carabiners.]

This hoodie displays a sense of both levity and pragmatism–the decoration on the back detaches into a pillow that would be a boon on flights, train rides, or waits at the DMV, and can also be used as a bag if you have spare carabiners or a cord to attach to the three included carabiners. A huge preventative measure for Autism freakouts is to never be caught off-guard without necessary supplies, and with this hoodie, you won’t!

MOSAIC COLLAR SWEATSHIRT

[image: Black long-sleeved sweatshirt with
rainbow mosaic piecework around the neck.]

This sweatshirt is made of unbeatably cozy 100% cotton fleece and its unique mosaic pattern provides a ton of visual interest to the default sweatsuit that I often retreat to in need of comfort and range of motion in my outfit.

ORANGE BEAN

Orange L.L. Bean coat with brown collar and cuffs, with multiple colored patches sewn on the center front.
[image: Orange L.L. Bean coat with brown collar and cuffs,
with multiple colored patches sewn on the center front.]

I'm not recommending dropping $2K on this jacket (though if you have that kind of money, by all means!), but I think it’s great inspiration for an even cooler look: Thrift an old jacket (L.L. Bean coats like this one are dime a dozen at thrift stores) and go crazy sewing on patches that make you happy or send messages about yourself that you don’t want to have to verbalize! This patch shop is a great place to start.

TERRY CLASSIC SWEATPANT

Bottom half of a model wearing light blue mostly traditional design sweatpants.
[image: Bottom half of a model wearing light blue
mostly traditional design sweatpants.]

These are the comfiest, best-fitting sweats I’ve found thus far in my extensive travels across the sweatpant matrix, and can be matched to Richer Poorer’s sweatshirts for an easy, cohesive look for the days when you just need to feel like you never really had to get out of bed.

TERRY TROUSER

Lower half of a model wearing tailored dark blue sweatpants. Their hands are in their pockets and they are wearing a long-sleeved gray sweatshirt and white converse shoes with black laces.
[image: Lower half of a model wearing tailored dark blue sweatpants.
Their hands are in their pockets and they are wearing a long-sleeved gray
sweatshirt and white converse shoes with black laces.]

Another Richer Poorer pick, these pants have the same incredible comfort with a more tailored look—I would even dare to wear these into the office!


Brown and gray cargo pants that convert into shorts.
[image: Brown and gray cargo pants that convert into shorts.]

Temperature changes are a huge trigger for me, so I love convertible clothing. These pants look slick and have a built-in belt and ankle cinches for a perfect, not too-tight or too-loose fit, and zip off into a just-as-good-looking pair of shorts. These would be excellent for hiking or biking or just one of those days that starts at 60 degrees and ends up at 80!

CONVERTIBLE DOUBLE KNEE PANTS

Brown pants with multiple pockets down the front of both legs.
[image: Brown pants with multiple pockets down the front of both legs.]

Another transcendent storage solution, I own a pair of these pants and they were worth every penny. The possibilities for storage space and for mixing and matching (the pocket panels are removable and interchangeable with the other colors of the pants) are immense and exciting. The pants are a bit heavy, which I find comforting but is something to consider if hefty fabrics bother you. 

ULTRA STRETCH COMFORT PANTS

Photo of a Black model, from the shoulders down, wearing a red jacket and khaki stretchy pants.
[image: Photo of a model, from the shoulders down,
wearing a red jacket and khaki stretchy pants.]

There are many days when looking “put-together,” especially for work, is a huge weight on my mind and comes into conflict with my comfort and ability to move freely. Uniqlo has a great selection of pants that smooth out this conflict, including this pair!


[image: Model from the shoulders down, wearing a baggy white top, with their hands in the pockets of baggy dark gray pants.
[image: Model from the shoulders down, wearing a baggy white top,
with their hands in the pockets of baggy dark gray pants.]

I have struggled with body dysmorphia, compounded by Autism, creating a hyperawareness of my body and how it fits into clothes, and sometimes I just want to throw on a huge, baggy sack and be done with it all. These pants allow for this sensation while still looking cool as hell. They are marketed as genderless and would look great on people of any stature.

ACCORDION PLEATED SKIRT

Person wearing a gray long plaid accordion pleated skirt and black Oxford shoes, from the side, with one foot slightly raised in front of them.
[image: Person wearing a gray long plaid accordion pleated skirt and
black Oxford shoes, from the side, with one foot slightly raised in front of them.]

This skirt is made of rayon, meaning it won’t hold wrinkles–one less garment to agonize over leaving crumpled on the ground for a day or two. Its fun, sharp texture is invigorating to the touch and to the eye, and the length is perfect for showing off epic shoes or socks. 

BRUISED HOODIE DRESS

Model wearing a hoodie dress in thin fuzzy horizontal stripes of green and orange.
[image: Model wearing a hoodie dress in
thin fuzzy horizontal stripes of green and orange.]

This dress is an easy choice for days where coordinating a top and bottom sets you off on a mental rampage through a closet of clothing that doesn’t quite fit the bill. Its colors are unique and beautifully integrated, and the hood is perfect for temperate but windy days when a jacket or hat is not in order but you want to protect your hairstyle.

BOILER SUIT

Model from the shoulders down, wearing a navy blue one-piece long sleeved boiler jumpsuit.
[image: Model from the shoulders down, wearing a
navy blue one-piece long sleeved boiler jumpsuit.]

Another great choice for when selecting both top AND bottom is just too much, this incredibly affordable boiler suit will only look cooler with wear and tear.

RUBBER GARDENING BOOT

A pair of black ankle-height rubber gardening boots.
[image: A pair of black ankle-height rubber gardening boots.]

Wet feet are a personal dimension of Hell to me, and these rubber boots would shield me from it without compromising the unimpeachability of my outfit.

BONDI SR

A white lace-up tennis shoe with an extra-supportive sole.
[image: A white lace-up tennis shoe with an extra-supportive sole.]

I injured an ankle several years ago, leading to a cascade of pain up and down my body every time I walked for three damn years before I discovered Hoka Bondis. They genuinely changed my life, and this iteration is in the mail to me as I type. With water resistance, slip-resistant soles, and no mesh, these are perfect winter sneakers, but I suspect I’ll be wearing them year-round. Anything that decreases my pain also decreases my Autistic distress, as the two are deeply interconnected for me.

RECYCLED EAR FLAP CAP

An olive green felt cap with adjustable ear flaps.
[image: An olive green felt cap with adjustable ear flaps.]

This cap is cozy, adjustable, will shield your eyes from overstimulating sunlight, and has a fold-down flap that will keep your ears warm AND do a bit to muffle loud noises (or signal that you’d rather not be talked to right now). 

PLAID FLEECE BONNET

Model wearing a blue plaid contemporary fleece bonnet that ties under the chin.
[image: Model wearing a blue plaid contemporary fleece bonnet that ties under the chin.]

Another cap that will serve many of the same purposes as the one above in a completely different aesthetic sensibility, with the added bonus of keeping your neck warm. 

CARPET HEAD COVER

A model wearing a thick knitted cap that covers the ears, neck, and  part of the chest.
[image: A model wearing a thick knitted cap that covers
the ears, neck, and  part of the chest.]

The most heavy-duty warm of all the head coverings I’ve recommended, this unique piece will keep you feeling safe and swathed when you are out in the cold.

KNOTS BANDANA

A square blue bandanna with white drawings of various functional knots.
[image: A square blue bandanna with white drawings of various functional knots.]

Check out all the bandanas this site has to offer and you might find one that satisfies a hyperfixation of yours, whether that’s wildlife, maps, fishing, or snakes! This knot bandana is hanging above my bed right now but it also looks great tied around your neck or head and will quickly convey your interests to anyone who might catch a glimpse. 

LEATHER ID WALLET NECKLACE/CROSSBODY

Model from the shoulders down wearing a pale brown crossbody leather wallet necklace.
[image: Model from the shoulders down wearing a
pale brown crossbody leather wallet necklace.]

This handy little thing is the antidote to feeling suffocated by belongings: simply slip your important cards into the pouch, clip on your keys, and get the heck out the door!

ITA FANNY PACK

Black fanny pack with a clear plastic window on the front that is protecting and displaying a number of enamel pins, including ones of Winnie the Pooh and Mickey & Minnie Mouse kissing.
[image: Black fanny pack with a clear plastic window on the front that is
protecting and displaying a number of enamel pins, including ones of
Winnie the Pooh, and Mickey and Minnie Mouse kissing.]

One of my recent hyperfixations was pin collecting, and if you’re into that too, having a subtle but handy ITA bag to safely display them in saves a lot of headache worrying about them falling off and makes you easily identifiable to other people with similar obsessions, perhaps fellow Autists who are now your new friends! All because of a fanny pack! See, fashion is powerful. 

SONY WH1000XM3 NOISE CANCELLING HEADPHONES

White Sony noise-canceling headphones.
[image: White Sony noise-canceling headphones.]

These headphones have been reviewed as comfortable for long-haul wears, great at noise canceling, and easy to use, minus any wire tangling or snagging that comes with non-Bluetooth headsets. I like the silver colorway a lot, but the black is slightly cheaper! 

I hope a few of these garments were invigorating or inspiring to you, and would love to hear how Autism has facilitated or hindered your fashion sense! DM me on Instagram @humanrepeller or head over to humanrepeller.com to see more of my articles on the various facets of fashion I am into. 

<3 HR

Tuesday, November 30, 2021

UC Davis Neurodiversity Summit 2021: Debate on the Neurodiversity Movement, with Shannon Rosa and Matthew Belmonte

Earlier this month, our senior editor Shannon Rosa was invited to participate in the 2021 UC Davis Neurodiversity Summit, on a panel debating the role of the Neurodiversity Movement in supporting and including autistic people with intellectual and communication disabilities. The panel was moderated by Dr. Susan Rivera and also included Dr. Matthew Belmonte, a neuroscientist and autism researcher. The two panelists agreed more than they disagreed, as you can see by either watching the video or reading the full debate transcript below. 

The full conference included autistic people with intellectual disabilities and/or who communicate via AAC, on panels such as a Discussion on Experiences of Discrimination and Stigma, and Autism, Communication and Agency, and is worth your time. 

Headshot photos of Shannon Rosa, a white woman with red hair and glasses, and Matthew Belmonte, a white man with Picard hair and a beard, next to their short bios:  "Shannon Rosa is the senior editor of Thinking Person's Guide to Autism, an autism information and advocacy nexus. She's the parent of a high support autistic son. Her writing can be found in The Washington Post, and Spectrum News, among other places. She lives in California with her family."  "Matthew Belmonte is a neuroscientist, and is brother and uncle to two people with autism. His research has explored the brain physiology that underlines autistic cognitive traits in people with autism spectrum conditions, and their family members, and in the general population. He has written both on treating and curing autism as a disease condition (narrowly and classically defined), and on recognizing and accommodating autistic traits and insights broadly construed."
[image: Headshot photos of Shannon Rosa, a white woman with red hair and glasses,
and Matthew Belmonte, a white man with Picard hair and a beard, next to their short bios.]

Dr. Susan Rivera: We're going to have a debate on neurodiversity between two individuals: Shannon Rosa, and Dr. Matthew Belmonte. And I have the honor of moderating this discussion. So, let me first introduce our two conversants. And before I do that, actually, I just want to say that this is going to be a debate that's really critical to the main point of our neurodiversity summit this year, which is to really think deeply about the extent to which the Neurodiversity Movement has been inclusive and supportive of the interests of people with intellectual disabilities and non speaking autistic people. And generally, those neurodivergent people who might require a higher level of support—and inclusive of all. 

So to that end, we'll be, as part of this discussion with Shannon and Matthew, exploring why people might be skeptical about the neurodiversity movement. So we wanted to give you a bit of a trigger warning that some of these ideas could be upsetting, and we really need to be able to accept both the excellence and the challenges that come with neurodivergence. So that's really what we are about today. 

With that, I'll go on to talk to introduce our two conversants before we start with the questions. First, Shannon Rosa, her pronouns are she/her, is the senior editor of Thinking Person's Guide to Autism, an autism information and advocacy nexus. She's the parent of a high support autistic son. And her writing can be found in The Washington Post, and Spectrum News, among other places, and she lives in California with her family. 

And then our other conversant is Matthew Belmonte, pronouns he/him. He's a neuroscientist, and is a brother and an uncle to two people with autism. His research has explored the brain physiology that underlines autistic cognitive traits in people with autism spectrum conditions, and their family members, and in the general population. And he's written both on treating and curing autism as a disease condition (narrowly and classically defined), and on recognizing and accommodating autistic traits and insights broadly construed. 

 
[video: Zoom panel of this discussion.]

Thank you very much, Shannon, and Matthew for being a part of this really important discussion. So I'm going to go ahead and start in with the questions. And first, what I want to do is ask sort of a stage setting question. So and it's a real simple one: What does the neurodiversity movement mean to you? And Shannon, I'd like to put that question to you first.

Shannon Rosa: Thank you so much for having me. Again, I'm the parent of a high support autistic son, which means that my son is mostly non speaking and requires 24/7 care for his best life. So neurodiversity, to me is fairly straightforward. It just means that all different kinds of brains and cognitions belong to people who have rights and deserve rights. Meaning that everybody matters, and that nobody deserves to be dismissed because they may present differently because of the way their brain works. And we've already had many different examples of that [in previous summit panels], and people advocating for neurodiversity today.

Dr. Susan Rivera: Thank you very much, Shannon; and Matthew, how would you respond to the question of what the neurodiversity movement means to you?

Dr. Matthew Belmonte: Thanks, Susan. And thank you, Patrick and everybody listening for being part of this. I think, you know, like with a lot of things with autism, there are at least two ways to define or to perceive it. And the essential construal of neurodiversity is just that it's about human variation and cognition, perception and action. And the fact that everybody, anywhere on that spectrum has value. I don't think anybody could argue with that. I think the term "neurodiverse" also has acquired a categorical meaning, though. Where it's applied to individuals as a differentiator, rather than to populations or societies as a unifier. And it's that second sense that can be problematic when it's combined with a certain Pollyanna rhetoric. But I think we'll get into that.

Dr. Susan Rivera: I think we will get into that more in the discussion. But thanks to you both, because I think just having that sort of "what it means to you" be part of the how we start our discussion is going to be helpful. Shannon, did you want to respond?

Shannon Rosa: Yeah, I'm sorry, I actually responded with the definition of "neurodiversity," rather than the "neurodiversity movement." So, the neurodiversity movement means advocacy on behalf of people who are neurodivergent, who have different brains. And it's important for people to know that the neurodiversity movement is informed by the disability movement, and specifically by the advocacy of people with intellectual disabilities who were formerly institutionalized. So by its very origin, the neurodiversity movement is inclusive of people of all abilities, speaking and non-speaking, intellectually disabled, and non-intellectually disabled—and I think that that is something that sometimes gets overlooked when people focus on the advocacy of neurodivergent people who are perceived as having lower support needs.

Dr. Susan Rivera: Thank you. That's really important, grounding. I appreciate that. The second question I'd like to ask is to really start to get into it. So I want to ask each of you to give your perspective on why some people are opposed to the neurodiversity movement. And, Shannon, let's go ahead and start with you again.

Shannon Rosa: I think it's really easy to understand why people might have a skewed perception of the neurodiversity movement, because I am a parent who is not autistic. I came from outside of the Autism and neurodiversity communities. And since I have a child who's very high support, I saw all these people whom I perceived as advocating and living independent lives, and couldn't understand how they had anything in common with my son, as autistic people—like, how could they be the same? 

But as I interacted more and learned more about the experience of autistic people, I realized that not only do autistic people have commonalities—though of course, every person is an individual—but all autistic people have commonalities that they share with my son, whether it is a love of sameness or social difficulties. And the fact that somebody may present as not having any disabilities in person, because they can "pass" doesn't mean that they don't have the same kinds of meltdowns as my son, doesn't mean that they don't have the same kind of sensory processing difficulties as my son, it doesn't mean that they aren't completely able of shutting down and not being able to speak the same way as my son. 

And so I think it has to do with the fact that this kind of diversity is not portrayed accurately in the media. I think that the media loves stories of people who are succeeding by their terms—not on disabled people's terms, but on the mainstream media's terms. And I think that they also love stories about—or I should say, not love, but prioritize stories about—people who, as is perceived often with people like my son, as "suffering." 

When what is really happening is that because people don't have access to the insights of autistic people, because parents perceive them as not having anything in common with their children, [families like mine are] actually cut off from the supports that could make their lives easier and could actually prevent a lot of the suffering that we see in these kind of sensationalized stories about autistic people. I'm not saying that people don't have difficult lives, because I understand that very deeply how things can be difficult. But I'm saying that the perception is so black and white that we don't have a real sense of the complexity of neurodivergent existences and how they interrelate.

Dr. Susan Rivera: Thank you, Shannon. Matthew. I'm gonna push this over to you. Now. Why do you think some people are opposed to the neurodiversity movement?

Dr. Matthew Belmonte: Well, again, yeah, it depends on how one construes the neurodiversity movement and at its core, and I think perhaps in a more original and essential and true definition, which Shannon voiced beautifully, I don't think most of the people who are opposed to it would actually be opposed to it. What I think does go wrong, as, again, as Shannon said, is "media amplification" and it leads to a sort of warping of what the neurodiversity movement is. 

And I will confess, you know in the past couple of decades, you know, hearing and meeting media stories about people speaking in terms of neurodiversity, it really has been alienating for my family because my brother is non speaking. My niece is not particularly communicative. She speaks, but it's difficult. And I think that there is this perception from what gets amplified in public, that the people who speak in the neurodiversity movement are speaking on behalf of the people who can't speak. That's not entirely true. But what gets put out there, what gets amplified presents that image.

Dr. Susan Rivera: Thank you very much, Matthew. And it's telling that both of you sort of highlighted the role that the media plays in what is sort of misrepresenting in some cases, or at least sort of biasing how the neurodiversity movement is represented. 

So now, a question that also sort of gets to the heart of the matter. I want to ask you, if you think that the concept of a "cure" is opposed to the neurodiversity movement? By that I mean, most likely a cure to autism, which is how it's usually thought of, but you might think of cure in a broader sense. So is that concept in opposition with the neurodiversity movement? Shannon, we'll start with you again.

Shannon Rosa: Okay. I think that this is a really complicated question (like most of the things that we're discussing). I don't think a cure for autism is a realistic thing given that autism not like Down syndrome, or Prader Willi, where there's a specific genetic fingerprint that we can use to say "okay, this is what causes this condition," right? So just starting from the very basics, [a cure for autism] is not realistic. 

But a cure for autism itself is opposed to the ideals of the neurodiversity movement, which is about, again, accepting people and understanding people of all different neurodivergencies—if we're focusing on purely the definitions of autism itself and not on any coexisting conditions like epilepsy or GI conditions, which are often the things that we hear people talk about that they want cured. I think that there are things a lot of people who are autistic themselves would say that they want cured, like debilitating anxiety, or debilitating depression—but those things are not intrinsic to autism. 

And overwhelmingly, when you actually talk to autistic people themselves—which is what I do all day long as the editor of Thinking Person's Guide to Autism, which is a nexus of hundreds of thousands of autistic people, professionals and parents and a lot of people who are all three or combinations thereof—autistic people do not generally want a cure. And if they DO want a cure, it is often because of the poor way that they are treated as autistic people. 

And we heard a lot about that today already, about [autistic] people who are not being treated like human beings, they're not treated as though they understand what's going on. They're not treated as though they matter or they listen, or they're conditioned to believe that they don't deserve the same rights as other people. Or they really want to have relationships with people and those relationships are not happening—or they're conditioned to think that they deserve relationships with people but are not taught how to actually form relationships—you know, there's so many functions. 

None of those things are intrinsic to being autistic. And so I think that yes, the idea of a cure for autism is counter to the ideals of the neurodiversity movement. But the reasons why people want a cure, and what they mean when they talk about a cure are very complicated. And so we have to listen to what people are saying when they talk about why they want a cure.

Dr. Susan Rivera: Thank you so much, Shannon. And Matthew, I want to hear your response to the question of whether the concept of cure is opposed.

Dr. Matthew Belmonte: I'd love to. You know, I think a lot of people do see it as opposed. And I respect Shannon's viewpoint. I see it the other way, I see it as entirely consistent with the essential definition of neurodiversity that I started off with. And I think that the difference really has to do not with any fundamental difference, but with what really what we mean by cure, what we mean by autism, and what we mean by neurodiversity. So maybe I can try to unpack that. 

I mean, I talked about the categorical meaning that the the term neurodiverse has acquired. You know, to me, it doesn't really make sense to talk about a neurodiverse person, I think, you know, we're talking about a neurodiverse population, a neurodiverse society, and every individual is somewhere on that multi dimensional curve, right? That distribution of different brain and cognitive traits. 

So when I grew up with my older brother, autism was something that was rare. It was something that was pretty consonant with—or mapping onto—what a lot of people now have come to be calling profound autism. And what really differentiated me and my brother was his issues connecting intention to behavior, and his inability to speak. I mean, we were both fascinated with sensory patterns. We both lined up things in order of size or color. Well you can see I'm rocking now, I'm a little nervous. But, you know, we had a nervous habit of flapping a little, we couldn't recognize new faces immediately, we didn't like to look into people's eyes. So he was "autistic," I was "shy", right? I don't think that anybody talking about curing autism is talking about "curing" a love of sameness, or "curing" a social unconventionality. That's not the issue. 

What the issue is, is if one has a brain that cannot connect one's intention to one's behavior in the moment, that can be very frustrating. If one has a brain that cannot connect one's thoughts, or flexible communication, that is very frustrating. Now, some people may treat those as support needs. I treat them as autism. That's what I want to cure. In that view, what would one be left with if one were to cure autism? While I think one would be left with a truly neurodiverse population, that would be composed of individuals that would feel in charge of their own perception and body movement and thinking and who would be able to share their unique insights with everybody else through communication. And I stand by that ambition.

Dr. Susan Rivera: I hear a lot of commonalities in what the two of you are saying in terms of the things that people wish to have "cured," if you will, would be the things that are causing them not to have their best life necessarily. And those things are not necessarily intrinsic to autism. They aren't a part of autism. I guess a follow up question to that would be, we talked a little bit about supports. So what should be the goal of supporting individuals? What's the outcome we should be aiming for there? Shannon, do you have any response to that?

Shannon Rosa: I think the goal for anybody—and again, this has been talked about before—is living a happy and contented life on their own terms. So I think that the goal of support should be making sure any disabling conditions that a person experiences are addressed. So for instance, for my son, that means he needs a calm environment, he needs a lot of communication support, he needs a lot of regularity, he needs things like visual schedules to help him know what his day is going to be like. Because if you have a communication disability and an intellectual disability, in his case, that involves a lot of anxiety over what's going on in your day, and what's happening to you, and we have to make sure he knows as much as possible about what his day is going to be like, to the best of anybody's abilities. 

And I think, most importantly, this involves an intrinsic understanding of autism, rather than an extrinsic understanding. It involves understanding what the autistic experience is like. And again, that's something that you can only get by talking with autistic people—it doesn't matter how much observation you do. So I think that any supports we provide for autistic people, whether they're our loved ones, or they are our clients, have to be autistic-informed. I think that, without using an expletive, I think if your supports aren't autistic informed, then they are, fill in the word. You're not going to be actually helping people. 

There are so many incredibly kind and thoughtful people who are involved in the field of autism advocacy and supports who aren't themselves autistic. My son has always had the kindest people around him—even if they don't necessarily understand why he's upset, they can tell if he's upset, and they do their best. But your best when you don't understand what autism means, isn't going to be enough.

Dr. Susan Rivera: Really important points. Matthew, anything to add to that?

Dr. Matthew Belmonte: I'm sorry, that was a little tangent. Can you remind me the question that we were asked?

Dr. Susan Rivera: Yeah, yes, of course. So I was just sort of saying what should the goal of support be? And what's the outcome we should be aiming for? Ultimately?

Dr. Matthew Belmonte: Yeah, well, I think it really goes back to what I answered before, in terms of what the ideal cure would be. So again, I would like to see people, well, I'm not sure how to choose my words here, whether you say people with autism, and maybe people with a residuum of autism, or people with Asperger's, or whatever. But I would like to see people able to share their insights, needs, desires, with the rest of the world. And I would like to see people with the agency, including the practical physical agency, to affect the world in the ways that they want it to move. And sometimes it's just a question of being able to move your body in the right way, you know, move your body in the way that you want it to, and at the time that you want it to. So these are the things that I think we really need to be working on. And I definitely concur with Shannon's point about the involvement of autistic stakeholders, because I will say that a lot of the autism research that has been done historically--Shannon, I'm going to use the word that you were thinking of, but wouldn't say--it's been bullshit.

Shannon Rosa: It actually isn't the word I was thinking of, but

Dr. Matthew Belmonte: Oh, okay. Well, sorry for speaking for...

Dr. Susan Rivera: Insert favorite expletive.

Shannon Rosa: Exactly.

Dr. Matthew Belmonte: So growing up with my older brother, I saw my parents bending over backwards to do these damn—I mean, for a while it was a low protein diet...one intervention, then another. And those things didn't generally do anything for my brother. What they did, is they generated papers. They generated academic promotions. And they were pretty good for I guess, for the people who were writing grant proposals. So I do think that we have to have a stakeholder involvement in setting the agenda. And that agenda should be a mix of the things that can come to immediate fruition to improve quality of life, but also the basic science about understanding autism more, so that we can get more things down the road. 

And to that end, I think that certain countries are ahead of others, when it comes to stakeholder involvement. And I always like to highlight the UK National Institute for Health Research, which actually has a requirement of stakeholder input, ideally, as part of the research team itself. The US I think, has some ways to go on that. But yeah, that's the direction in which I think we should be working.

Dr. Susan Rivera: Thank you. And I'm so happy and grateful that in both of your answers, the importance of autistic stakeholders being at the table and helping to shape and form, research and treatment came up. So thank you very much. The next question I want to ask kind of overlaps with a little bit of what we've been talking about. More specifically, we often speak about sort of medical and social models of disability, as though they're opposites and irreconcilable—as though we have to choose between focusing only on changing the person or only on changing the environment. And I want to know what your thoughts are about that. What do you think? To switch it up we'll start with with Matthew this time.

Dr. Matthew Belmonte: Okay. Well, yes, to draw a loose analogy, we're not going to stop doing research on say, spinal cord problems, just because we've installed curb cuts. And we're not going to do vice versa. "I'm going to stop with all your curb cuts, because we're doing research on spinal cord problems." So, it's a false dichotomy, isn't it? And I think at the same time, we can recognize that there are certain issues which are properly construed in a medical model, and as a deficit or disease. At the same time, we can accommodate those issues. And we can also accommodate all of the surrounding issues, you know, the things that aren't actually deficit disease, I talked about not curing a love of sameness and not curing social unconventionality. We need that stuff, because we need a diverse society. So no, it's a completely false dichotomy, and it actually does great harm.

Dr. Susan Rivera: Thank you. And Shannon, what's your what's your point of view there?

Shannon Rosa: I mostly agree with Matthew, as a lot of you will see that as this discussion is going on, we have more agreement than we have disagreement. But I think it's important to understand what the medical and social models mean. So the medical model views autism as a disability [meaning] a collection of deficits, whereas the social model, it says that it's the world that needs to change—in a nutshell. And I think that they actually both have places in the neurodiversity movement. 

If everybody would just remove their fluorescent strobing lights in the classrooms, then you'd have a lot fewer meltdowns for autistic kids, right? But then if the strobing lights caused that autistic child to have a seizure, I mean, yes, in that one incidence [removing the light] would fix things, but it doesn't change the fact that they have epilepsy and that they need treatment for epilepsy. And that's where the medical model comes in. 

So I think that we can't say that it's an "either or" is a problem, as it is, with almost everything that we're discussing. We have to talk about the complexities of all these issues rather than saying it's a binary. We absolutely need research into medical issues that affect autistic people. I want to know, for instance, why is it that my son has these intense sensory issues? It would be good to know if there's a mechanism for that, so that we can help him. But that doesn't necessarily mean "curing" him, that means understanding. 

I think the real problem, honestly, with the medical model for autism is that more than 80% of the research on autism right now is biologic and less than 10%, according the Interagency Autism Coordinating Committee's report, is on quality of life. And Susan knows this intimately since she's now on that board. So what we need to do is switch our focus to be more on the social model, and less focus on the medical model—not to eliminate it, but for there to be equity in addressing both of these needs.

Dr. Susan Rivera: Thank you very much, both of you for those great answers. I want to ask a slightly different thing now and again it overlaps a little bit with what we've been talking about. But it's kind of a pointed question. And that is, who should speak for neurodivergent people who cannot advocate for themselves, either due to age, whether they're too young, or due to communication barriers. So, Matthew, let me invite you to opine on that question.

Dr. Matthew Belmonte: Yeah, well, obviously, this has been a question that's central, for my family. The short answer is: whoever can be trusted to have their best interests at heart and who knows them best. And in the vast majority of cases, that is a family member. Either a parent or you know, when the parents are no more, a sibling. And in some cases, you know, it's another trusted person. But I don't think there's any substitute for that familial closeness and love and that unspoken understanding. I mean, when my brother and I were, you know—when he was sifting sand through his fingers, I knew exactly what he was feeling: that each individual grain and the uniformity of them all put together. Or when we were both staring at shadows rising and falling under street lamps. It was that regularity and, that comfort and, there's that sense of "yeah, okay, I get you." We don't need to say anything. "I understand what you want. I understand what you need. I feel your feeling." I don't think anything really can substitute for that family connection. 

And I think that in most cases, a family member is the one who should be speaking (with information from all available sources) when the person, unfortunately, despite best efforts, and because of current technological limitations, cannot speak for themselves.

Dr. Susan Rivera: Thank you, Matthew. Shannon, what would you say to who should speak for neurodivergent people who cannot advocate for themselves?

Shannon Rosa: I would say it depends on if we're talking on a broader level or an individual level. Of course, I do not disagree with Matthew—I mean, the thing is that whereas autistic people know autism best, parents tend to know their children best, or their loved ones best.

But again, if you don't have an understanding of your [autistic] child's experience, it can be hard to be the advocate that they need. And in this case, when we're talking about the needs of autistic people as a population—non speaking and communication-disabled people as a population—we have a lot of people in the community who have those traits and who are able to speak on those conditions. And also, a lot of autistic people have been non speaking as children, and they have developed speech later on (whether it's through AAC or gradual, verbal spoken ability). So, I think that we have to know who we're talking about. 

I also think there's a real problem with the way that people speak about neurodivergent people like my son, because too often, the permission is given to be "honest" about the difficulties that they experience without having any respect for their privacy. I mean, I understand how parents can feel like they don't have anybody helping them and how they have to talk about how things are to get attention paid to the needs of their non speaking children. 

But they could also actually listen to the neurodiversity movement, and advocates, about the things that [their kids] need. For instance, the Autistic Self Advocacy Network's Executive Director Julia Bascom spoke very eloquently at the last Interagency Autism Coordinating Committee meeting about the need to advocate for mental health on behalf of people with intellectual and communication disabilities. 

So I think that if we don't have [autistic] insights, we can't advocate for our [autistic] loved ones as a whole, but, of course, as individuals, we are going to advocate for our individual loved ones.

Dr. Susan Rivera: Thank you both. You know, I think something from the Q&A is really relevant to what both of you were talking about. One says, "Many families are dysfunctional." So you might be good advocates for your family members, but they liken it to gay conversion therapy; family can sometimes be the problem. And of course, this is a reality that we all have to be aware of. And so I wanted to infuse that comment from the Q&A, but also just wondered if either of you had a response to that?

Dr. Matthew Belmonte: Well, if I may, that's certainly true. And and that's why I said in most cases, that's why I qualified it. Yeah, tons of autistic or non autistic people have screwed up families. But in most cases, their families are trying to do the right thing, even if they're under a whole lot of stress.

Shannon Rosa: Yeah, I agree. And I would also say that I think a problem that we don't talk about enough and that Matthew has alluded to a little bit is that a lot of times, autistic people, they don't spring from nowhere, right? A lot of times we have autistic parents or autistic family members or we see a constellation of traits in the family. And so kind of counter-intuitively, being autistic can actually make it harder to be around another autistic person or to be a caregiver for another autistic person because of things like competing access needs (like one of you needs to be loud, the other one needs quiet) or executive functioning issues where it's really hard for you to manage all of the schedules and routines and everything for another person. 

And then the other thing is that again, because we don't have these autistic-informed resources to help parents support their autistic children, a lot of parents do not know how to support their kids, and they see them as a project or a problem rather than as a human. And their lives are very, very hard. They are harder than they need to be. I'm not saying that "if you listen to autistic people, it will be a magic wand and there will be fairies running around and everybody's life will be wonderful". That is not what I'm saying. But if we have more patience and listen to autistic people about what our kids need, then all of these families can be a lot happier. Because you know, a family is only as happy as its least happy member, right? So if your autistic loved one is unhappy, everybody's going to be unhappy. And that's not how any of us want to be.

Dr. Susan Rivera: Thank you both so much. I'm going to follow along now and take some more questions from the Q&A. One is, "What do you all think of the fact that, if I'm correct, the term autism was defined in the context of the medical model, which comes from a deficit framework. Similarly, ADHD, which I have..." so says the the person making the comment "...was also defined in a deficit context? Can that coincide with the neurodiversity movement?"

Shannon Rosa: Yes. [laughs quietly]

Dr. Susan Rivera: Any challenges with that coincidence?

Shannon Rosa: I mean, it comes from the DSM, which is basically a collection of deficits: "These are the things that are wrong with you." And, trust me, there's a lot of ADHD in my family. So knowing that you have a disability is one thing, and knowing how to support yourself as a person with a disability is something else. And that comes from the social model, usually.

Dr. Susan Rivera: Thanks, Shannon. Matthew, anything to add to that?

Dr. Matthew Belmonte: Yeah. With regard to autism in particular, we've been suffering from an insufficiency of terms. And as I said, you know, back in the 1970s, autism was this this "rare" thing, and it really, rather maps on to what people these days want to call--some people these days want to call--profound autism. And in those instances, the deficits are quite frank, and I think incontrovertible. If someone doesn't have the ability to speak, or doesn't have the behavioral or cognitive control, that's pretty clearly a biological brain issue—a medical issue. But autism has come to be something so broad, that these days when we use the word, it seems to me not to fit because the word is coming, as Shannon said, from the DSM. From this catalogue of things that are by definition, "disease states." And I think that a lot of people diagnosed with autism these days, especially in light of DSM 5, where everything's been mushed together, really don't have what I would consider to be a"disease state." A lot of people diagnosed with autism these days have a difference that should be fully (or at least mostly) the subject of accommodation.

So I'm not sure where I'm going with that. But just to say that I think a lot of the controversy here comes from the fact hat the terminology is so insuffcient, and historically has been quite slippery. And we now find ourselves in this weird circumstance where we're using what is definitionally a disease label to describe an aspect of human cognitive diversity, which I don't really think is appropriate. I think the whole thing needs to be reframed.

Dr. Susan Rivera: Matthew, there's something in the Q&A that I think is a bit of a tough one for you, but I'll read it directly. "As a speech language pathologist, I would agree that treating something like communication difficulties is important." And I don't think the neurodiversity movement is opposed to that. But this person says, "...I'm curious as a non autistic person, why insist that this constitutes a 'cure', when many autistic people have expressed that this wording is hurtful, so why not advocate for the interventions that help with the specific challenges you've highlighted without using terminology that can be hurtful?"

Dr. Matthew Belmonte: Thank you for the comment. I really don't intend to be hurtful. I'm sorry, if it has that effect. I guess where I'm coming from, is looking at the example of autism that I grew up with, it's very difficult for me to abandon the ambition of curing that (and again, you know, please take on board what I mean by cure). Again, I think this is an xample of terminological insufficiency, both in terms of the slipperiness of what different people mean by the term "cure," and also the slipperiness of what different people mean by autism or what people mean--what people construe as essential, rather than co-occurring features of autism. I really don't understand immediately--I don't know immediately, how to deal with this. I resist abandoning that ambition, because it feels like shortchanging my family, actually. I don't know what to do about it. I do take your point.

Dr. Susan Rivera: Thank you so much for that answer. Matthew, I really appreciate you giving us that very heartfelt perspective. I do appreciate that. This might be one of our concluding questions from the Q&A, as we're we're starting to wrap up time-wise. But if we have more time, we'll take more. And there is one that says "Can anyone suggest spaces available for casual conversations to bridge the gap between ASD researchers and stakeholders that goes beyond this summit?" 

Shannon Rosa: Well, again, I'm the senior editor at Thinking Person's Guide to Autism. And we publish articles frequently on research. We have one at the top of the page right now that's on the Spectrum 10k project from a bunch of autistic autism researchers. We have a very active Facebook community. We have a very active Twitter community. And we also sponsor an event at every in-person INSAR (The International Meeting For Autism Research) called AutINSAR, which is a Twitter chat that is literally between autistic people and autism researchers, and many of whom are both. So if you need any of those resources, please let me know. So if you follow Thinking Persons Guide to Autism, or you write to us at thinkingautism at gmail.com, I can get you all these resources. And of course, there's always the participatory autism research efforts.

Dr. Susan Rivera: Thanks, Shannon. Matthew, I see you've put something in the in the chat for everyone to see.

Dr. Matthew Belmonte: So I want to I want to put in a plug for my friend Jonathan Drury's project "Autism Dialogue." It's something that I participated in, and it has contributed a lot to my insight and to my I guess, my ability to inhibit quick and ill advised thoughts. So this is something that that follows the model of "Bohm dialogue," if you're familiar with that. And it is a dialogue amongst people who identify as autistic or autism spectrum, and people who have a professional or personal stake in the community. And it is really a very nice alternative, sort of the opposite side of just yelling at each other on Facebook.