Monday, November 30, 2020

Recognizing How Autistic Children Express Love

Image © Farid Iqbal Ibrahim | Flickr / Creative Commons
[image: The fingers of two silhouetted hands forming a heart shape.]

Ann Memmott

I want to talk about how autistic children might express love for their parents or carers. 

A well known book about 'five love languages' says that these languages are:

  1. Words of affection.
  2. Doing things for someone
  3. Giving gifts
  4. Quality time together
  5. Physical touch

It's certainly true that there may be a good few autistic young people who express their love for their closest family using one or more of those.

But there are other 'languages of love' in autistic communities:

1) "I love you, so I won't cause you a brain event by overloading you with eye contact and other social/sensory stuff."

But of course in the world of non-autistic people, this may be deemed rude, aloof, 'in their own world.'  A misunderstanding.

2. "I love you, so I will download information for you. Here it is. This is what I cherish, and so I am sharing it with you as an act of togetherness."

But of course in the world of non-autistic people, this may be deemed irrelevant, emotionless, inappropriate, boring.

3. "I love you, so I will give you space. I know that when I am upset, it helps me to have space and quiet, so I will offer this to you too."

But of course in the world of non-autistic people, this may be  interpreted as callous, unfeeling.

4. "I love you, so I will use a favourite cartoon, advert, book quote or similar, and repeat lines from that. You'll know that it's about people loving one another, about a happy family, about a wonderful relationship."

But, alas, so often people think it's meaningless repetition.

I'm quite often with parents who say to me, "My child will never love me. They'll never be able to tell me that they care about me. It's hearbreaking."

And there is their lovely autistic child, using all these autistic 'love languages,' sure that the parent recognises them.

One of the most important things autistic people can offer to parents is interpretation skills. Interpreting our culture, our way of communicating. Preventing misunderstandings. Helping families to learn one another's languages of love and caring.

So many parents grieve, thinking there is no love.

Look again.

Sunday, November 15, 2020

Do You Want to Play?: A Children’s Book on Autistic Play Written by Autistics

Cover of the book Do You Want to Play: Making Friends With an Autistic Kid. The background is purple on the top and white on the bottom. On the left is a large illustration of white kid with short curly red hair bedecked  with a  blue bow, holding a yellow toy dump truck, and looking at the viewer
[image: Cover of the book Do You Want to Play: Making Friends With
an Autistic Kid. The background is purple on the top and white on the bottom.
On the left is a large illustration of white kid with short curly red hair bedecked
with a  blue bow, holding a yellow toy dump truck, and looking at the viewer.]

Jess L. Cowing

“Sometimes it’s nice just being beside you…”

As publishers continue to release and market books that pathologize autistic kids such as Finding S.A.M. by Mary Bleckwehl, it is refreshing when a children’s book about autism includes an autistic character who is just an ordinary kid playing in the sandbox after school. So often depictions of autistic children for non-autistic people portray autistic kids as oddities and problems who must conform to neurotypical social norms in order to make friends and build community. 

Written by Daniel Share-Strom with a foreword by Maxine Share, and with illustrations from Naghmeh Afshinjah, Do You Want to Play? offers readers ways to reimagine shared experiences that do not pathologize autistic kids as problems, but instead encourage creative play between autistic and non-autistic kids as just another aspect of social negotiations on the playground.


Do You Want to Play? flips the script for how autistics are always expected to adapt to neurotypical social norms and expectations. Main character Jamie is playing after school, and when she sees a boy that she does not know, she attempts to play cars with him. Jamie learns from her friend Caroline that this boy named Dylan is autistic, and her friend suggests that that might be the reason he “doesn’t play with anyone.” 

For most of the book, Jamie is confused because Dylan does not play with her in the way she expects. But autism is not the barrier to playing; rather, as the author suggests, Jamie’s confusion prompts a quest where she tries out different kinds of play that might initiate a friendship. As Jamie posits early on, if “but.. he liked cars…/and I liked cars…/…so we could be friends, right?!”


Do You Want to Play? is not about an autistic kid conforming to his peers’ expectations, but rather, follows Jamie, the narrator and non-autistic kid, as she takes the initiative to meet Dylan where he is, lining up cars in the sandbox beside him. Dylan remains in the sandbox most of the story and Jamie is the one who approaches him, attempts to play, leaves, and then comes back when she thinks of a compatible way to share the sandbox. 

Dylan’s introduction even occurs upside down—that is, the unique format of the book requires the reader at two different points to physically turn the book upside down to read Dylan’s narrative as if to emphasize the moves people are required to make to shift their focus to a different perspective. And while Dylan speaks only at the end of the story to consent to Jamie’s request to play, he communicates throughout the story via actions beyond conversation. For example, at one point, he returns Jamie’s favorite yellow truck to her after she thinks it is lost.


As Jamie swings next to her friend Caroline, she realizes that there are different ways to play and share time with someone, or as Caroline states, “I like when you push me, but swinging beside you is nice, too.” Jamie latches on to the idea of being “beside someone” as a way of engaging and interacting, and decides to try that approach with Dylan. Eventually, Jamie plays next to Dylan and they share the sandbox together, Jamie playing with trucks next to Dylan who lines up cars.


Ultimately, Do You Want to Play? models how to build friendships through shared interests and negotiated interaction. Dylan is not singled out for being weird, he just happens to be different in an interesting way that Jamie is invested in accommodating and adapting for. Eventually Jamie recognizes how playing beside Dylan is also an equally valid way to play with cars that she just had not considered before. 

Even so, Jamie is still the narrator, and I wonder what Dylan’s narration of this experience would be. As refreshing as this book is, it would be great to see more children’s books also written by autistic people and that include multiple autistic and neurodivergent characters including autistic girls of color and autistic adults, not as metaphors or points of inspiration for neurotypical people, but as regular humans just living their lives, and sometimes playing with cars in a sandbox.

Wednesday, October 21, 2020

Why No Autistic Child Should Be in ABA Therapy

A visual icon with black text at the top reading, "no flapping  hands" above an illustration of a person flapping their hands, crossed by a black diagonal line.
[image: A visual icon with black
text at the top reading, "no flapping 
hands" above an illustration of
a person flapping their hands,
crossed by a black diagonal line.]
Shannon Des Roches Rosa

Professionals usually tell parents of newly diagnosed autistic children that it is "critical" to put those children in early intervention therapies like Applied Behavioral Analysis (ABA). Parents are warned about "missing a developmental window," then urged to place young children in intensive therapy for up to 40 hours per week. We are told that these therapies are justified by decades of research, and that they will save our children by making them "indistinguishable from their peers."

If parents are new to disability, plus in full-blown panic mode due to relentless cultural negativity about autism—as I was—they may become desperate for guidance from "experts." They also tend to do exactly what they are told: They put their kids in ABA. As I did.

What most parents don't know, and what I only know now after encountering both autistic experiences with ABA and following contemporary ABA research, is that autistic children need supports and accommodations, not interventions based on non-autistic child development and conversion therapy. "Early interventions," and especially ABA, are the exact opposite of what young autistic children need to thrive. As autistic parent Carol Greenburg notes, "I’ve heard many parents say their autistic kids are 'rule-followers' and bitten my tongue wanting to ask if they thought it’s because we’re naturally rigid, or because we’ve been undergoing compliance training for as long as we can remember."

Autistic children need their parents to understand that autistic "behaviors" usually have rational origins. That when we allow ABA therapists to "extinguish" flapping, echolalia, or other forms of autistic self-regulation to make a child appear less autistic, but without understanding why the child does these things, autistic children perceives this as irrational punishment. That children who act like they are in distress usually ARE in distress, and instead of teaching them to suppress that distress we need to find the source, be it pain, illness, sensory overload, or lack of functional communication options.

Research clearly shows how ABA can traumatize autistic children, instilling, "Compliance, learned helplessness, food/reward-obsessed, magnified vulnerabilities to sexual and physical abuse, low self-esteem, decreased intrinsic motivation" and other worrying traits. Further investigation shows "limited evidence" that ABA improves cognitive or adaptive skills, and that ABA's foundational repetitive drills are counterproductive for autistic learning styles. Analysis also shows one of ABA proponents' most common claims—that the therapy is evidence-based—is riddled by conflicts of interest.

Why don't more parents of autistic kids question ABA therapy? Probably because they don't know any better. I certainly didn't. Yes, I was aware of how awful the origins of ABA are, and that founder Ivar Lovaas literally tortured his child subjects, bellowing in their faces and giving them electric shocks. I knew that Lovaas believed that in "forcing [the autistic child] to act normal, he can push the child toward normality." 

But my son's ABA wasn't like that: It was a new kinder, gentler approach, incorporating methods like Pivotal Reponse Treatment (as seen on Supernanny) and completely without any "aversives." But however it was recast, it was still drill-based conditioning that focused on getting my son to do tasks because an adult said so, rather than understanding how my son learned best as an autistic individual—or indeed why goals like learning to make eye contact make no sense for most autistic children. 

Unfortunately, I wasn't confronted with the case against ABA until my son was a teenager. More worryingly, my ignorance is far from rare. Most research and writing criticizing ABA is either academic, or disability rights-oriented, and thus not on your average parent's radar. Dominant autism organizations like Autism Speaks, to which parents new to autism are often referred, describe ABA as a "'best' practice treatment." Criticism of ABA rarely surfaces in mainstream media—and if it does, concerns are part of a "both sides" discussion, at best.

Most parents, therefore, have no idea that autistic researcher Michelle Dawson decries ABA's premise as, "if autistic children must be treated ethically then they will be doomed." They don't know current research on ABA techniques endorses "motivating" children by withholding food or drink until they are desperate enough to comply. They don't realize that ABA "manifests systematic violations of the fundamental tenets of bioethics," nor are they aware that Association for Behavior Analysis International openly endorses techniques both the United Nations and the FDA consider to be torture.

Parents are also unlikely to encounter autistic people who can discuss their ABA experiences, and so don't understand that they may be setting their children up for trauma and dehumanization, rather than useful learning. And while autistic accounts endorsing ABA do exist, they also tend to be works of internalized ableism: preoccupied with mainstream social norms, dismissive of autistic processing and perception, and unaware that autistic people don't require ABA to learn skills like toileting or how to take turns. 

Is it then any wonder that—questionable adoption motivations aside—"rehomed" autistic preschooler Huxley Stauffer was both placed in, and did not "respond" to, ABA therapy? And that ABA may have made his life harder than it would otherwise be as a disabled transnational adoptee? Huxley's story is a caution for parents regarding our expectations for, and treatment of, our autistic children.

How can parents support autistic children without subjecting them to ABA? First, we need to learn about autistic traits, and how the interplay of autistic processing, motor, and sensory factors, and the most compassionate ways to respond, and how the way autistic brains work can make standard intelligence and adaptive scores irrelevant to their child's quality of life or “outcome.” This will help parents understand why ABA is inappropriate for autistic learning.

Next, parents need to find autism professionals who not only understand these factors about being autistic, but who understand that autistic people find prolonged interactions with non-autistic humans exhausting—instead of making nearly every mainstream autism intervention about adults invading the space of autistic children for stretches of time their peers would never be expected to tolerate. Parents also need to learn to be selective about the therapies they do choose: Our kids can indeed benefit from tailored therapies like speech therapy or occupational therapy, as long as those approaches are also respectful of, rather than antagonistic to, being autistic. 

It can be really hard for parents who see their kids progress while in ABA to hear criticisms of an approach that they may consider "the only thing that works." Parents may not believe their kids could learn such skills without being put through drills. Personally, I saw my son learn to pull up his pants and use a visual schedule, and declared ABA a success. But now, years later, I am worried about some of my son's less adaptive tendencies, worry that they may be acquired from his years of ABA, and fret that this is my fault for not knowing any better from the get-go. 

I want parents to consider that, when things are hard, doubling-down with more ABA techniques may make things worse. I want parents to ponder that an autistic child in a meltdown, however provoked, is experiencing just as much stress as parents are, if not more so. But if parents have never been given a framework to recognize their child's communication or experience (ABA supplies neither), if the child hasn't been given the tools to convey to their parents just how how distressed they are, and if as a result the child has probably lost trust in the adults in their life, then any "acting out" is often that child advocating for themselves in the only way they can.  

So, be wary of parents who feel victimized by having autistic children while also embracing ABA. Such people are unable to recognize that when autistic children have "behaviors" even while in ABA, that is usually because those children are justifiably distressed, and have never been given the tools to cope or feel safe in an autism-unfriendly world. Be deeply skeptical of stories from such parents about how they gave up on their older children since they “tried everything,” and their children are still autistic. Stories that blame the child's autism, instead of inexplicable tragedy or human fallibility, in the absolute worst case scenarios.

If we are all going to do right by autistic children, we need to listen to autistic people with first-hand insights about the damage wrought by being mistreated and misunderstood the way ABA and other early interventions do. These are not always easy conversations to have. Consider what autistic disabled advocate Cal Montgomery told me, “We don't actually know what autism looks like in almost any autistics. We know what autism plus trauma looks like. And with respect to the general idea of what autism is, that mostly comes from white, traumatized, boys and men." So not only are we mentally scarring autistic children, but we're not even considering the needs of those who don't fit a stereotypical autistic profile.

We need to talk to autistic people about the effects early intervention had on them. Since my son doesn’t have those kinds of conversations, I spoke with Grace Trumpower, an autistic pre-med college student. When Grace was a young child, their parents were persuaded to put them in an intervention called sensory exposure therapy, which conditions a person to gradually tolerate distressing stimuli. Grace said it was initially fun, but then got distressing. And the therapists not only intentionally ignored that distress, but hid it from Grace’s parents. Grace said that, ironically, the therapy room was full of therapeutic items like noise-canceling headphones and weighted blankets that actually would have helped them cope—but the therapists’ goal was normalizing their clients, not accommodating them.

If we’re going to have early intervention research do right by autistic people of all intersections, we’re going to need participatory research—research done with autistic people, rather than on autistic people. Participatory research is already a growing movement in social and mental health autism research. It’s time for behavioral autism research to follow suit. And for a timely example, we can learn a lot from pandemic hero Dr. Fauci and his past experience first ignoring and then embracing AIDS activists: Real progress doesn’t come about until you work with the community you’re trying to help.

There are fundamentally flawed assumptions built into ABA practitioners’ and supervisors’ training. Most of these professionals have a sincere desire to help underserved children, which is why it can be difficult for them to comprehend why the philosophies they've poured their educational and professional souls into are so flawed. And while I've encountered many ABA "techs" who are both undertrained and under-committed (euphemism), some truly wonderful people have not only worked with my son, but taught both of us a lot—despite the questionable framework in which the learning occurred. However if early intervention professionals truly want to serve autistic children, then they need to transition to better ways to guide our autistic kids, ways that don’t crush those children's spirits and hearts. 

I can't undo the years my son spent in ABA, but I am also now upfront with anyone who works with him about exactly why I do not allow ABA-type approaches. I let them know they may not demand eye contact, quiet hands, or sitting at a table for intolerable stretches. He may not do pointless busywork drills. His communication and requests and boundaries must be respected. He will set his own visual schedule, and gets breaks when he needs them. Due to this shift, he now trusts the adults in his life to listen to him, and have his back. He is, without a doubt, a happier person now.

If we want autistic children to have the kind of lives they deserve, then professionals need to stop promoting stress-triggering ABA and early intervention therapies that encourage parents to see their child as broken and incapable of learning any other way, and instead help parents learn best practices for supporting and accommodating autistic children. Until this happens, generations of our community's kids will grow up believing that how they react to the world is wrong, rather than different. As autistic writer Finn Gardiner tells it, "I had a bunch of stims trained out of me and my speech therapist was always giving me rewards for eye contact and ‘quiet hands.’ It took me until I was an adult to be comfortable with visible stims again."

Tuesday, September 15, 2020

Pablo: A Show For And Featuring Autistic Kids!

Sparkle, a seven year old autistic vlogger was asked to review Pablo, the CBeebies children's programme, which she throughly enjoyed doing!

Sparkle, a little mixed-race girl, pointing at Pablo playing on a TV screen..
Photo courtesy Sparkle and Family
[image: Sparkle, a little mixed-race girl, pointing at the title image
for the series Pablo, which is playing on a TV screen.]

Pablo is explained on the BBC website as "Five-year-old Pablo is on the autistic spectrum. He creates imaginary friends who come to life, and together they go on fun adventures and cope with tricky day-to-day situations." (In the U.S., Pablo is available via Netflix.)

Sparkle is familiar with Pablo having watched it for the past few years; she watched two episodes to recap so she could give a fresh perspective. 

First was 'The Sparkles': Pablo goes for a walk on the beach, and is enchanted by the beauty of the reflection of the sun as it glistens on the sea surface. As he paddles and splashes, the water ripples and sparkles. Pablo—as many of us autistics can—is able to capture the image and memorise it perfectly to take home and replay.

He 'watches' the the sparkles play and chase each other around a lamp light, and then it phases into the animation. 

The sparkles play with and chase the animal characters,  who all enjoy looking at them, Pablo comes and explains to them what they are.

Sparkle's conclusion from this episode was that Pablo has an amazing imagination and things in his head to watch and enjoy. "The sparkles are pretty and they match my name!" She giggled.

We then watched 'When Foods Collide.' In this one, Pablo is out for something to eat at a cafe with his mum, and has communicated he wants egg and spaghetti hoops. It is brought to the table on a plate and Pablo is distressed to see the egg is being touched by the spaghetti hoop sauce. The episode lapses briefly into animation, with the egg trying to move away from the sauce. "Leave me alone!" It trills in horror. The scene then comes back to Pablo in real life, who expresses his displeasure by flapping his hands and refusing to eat the food. 

At this point we stopped watching, as Sparkle had a lot to say: "When foods touch, it's wacky, like its like two different foods combined! The taste is horrible and it makes my head dizzy." She pauses, then continues, "When food touches I have to scrape it, as it's disgusting," she exclaims, wrinkling her nose in disdain. 

Many autistics cannot tolerate the blending of textures or flavours when it comes to their meals. Sparkle has a plate that is divided into sections, so we can put her meals into the compartments and not distress her. This works well for her, and makes her meal times more enjoyable. 

Sparkle enjoys Pablo, she likes that he's an autistic child. She asked whether the actor is autistic, I didn't know and she said, "If he's not he must have a lot of fun pretending to be!" [Editor's note: Yes, actor Jake Williamson is autistic!] She is happy to hear that autistic people voiced the characters and likes the animation. "Nice colours and a good message," she states. 

Pablo for the win! 

Friday, August 21, 2020

An Autistic Perspective on Becoming a New Mom

Photo © Howard Ignatius | Flickr / Creative Commons
[image: A newborn baby being held up for the camera. 
The baby's mother is in the background, lying agains a pillow and blurred.]

Amber Bond

It's been 20 days and motherhood hasn't been what I expected.

As an autistic person, I have incredible sound sensitivities. On the morning of my scheduled C-section, a man wheeled his tiny toddler—who wailed impossibly, seemingly uncontrollably—past the waiting room in a stroller, at least thirty times for at least thirty minutes. I messaged my mother that I was reconsidering my life choices. 

This was, of course, met with emoji laughter—though I wasn't sure I was joking, as the sudden, shrill, and very loud sound of other people's children crying has always cut through me. I had inquired the previous day if earplugs might be a reasonable choice for motherhood.

I used to shirk away from pregnant women. I constantly found myself wanting to say: "Do you know that there is a human being growing inside you??" as though it were some sort of alien development. I cringed when they talked of sudden nosebleeds, all-day vomit, or even when they joyously announced that we could all gather 'round to see this foetal child kicking visibly through their skin.

I've often said I don't understand children prior to the age of one or two—that I'm not sure how to interact with something that tells me nothing.

However, I have often envisioned myself growing old with a daughter. In considering this idea, it took a long time to work through the fears that my general state of being brought me: Would the noise be too much? Would I have to walk away too often? Would I not be able to understand the child until they could communicate in words? Would I be too cold? 

My husband always veered more on the side of wanting a child, but said "It's your body and your choice." I was thirty-four before I started realistically considering the possibility of motherhood.

It took six months for our efforts to come to fruition, and the sadness I felt in worrying that maybe I could not have a child at all let me know that, despite all my anxieties, parenthood was something I wanted.

My anxieties are often self-protective. If I imagine that a situation will be extremely difficult, I am often surprised when it is less so. The month we received a referral for fertility—being that I was past the age of thirty-five by then, and we had been attempting for six months—was the month before our baby was naturally conceived.

I also have incredible tactile sensitivities. This has, as long as I remember, caused a dissonance between myself and my physical being. Occupying space has always felt disconcerting, and I dealt with this feeling in my late teens and early twenties by starving myself very small. Though I am physically recovered, the mental ramifications of being so fiercely food- and body-conscious for so long have remained with me. 

Therefore, all the potential physical changes of pregnancy were terrifying to me. 

However, nothing has made my body feel like it has functional purposes more than aesthetic ones like pregnancy, birth, and postpartum. Somehow my body grew a human being. Somehow it made essential food for that human—and something about all of this seems much less strange or alien or creepy than it did to me in unknown theory.

If you want absolute humility, two days in the hospital postpartum will do it. With previously unknown nurses changing pads, setting and removing a catheter, and squishing at my boobs at all hours, I'm pretty sure I lost all shame and discomfort in the name of my child.

My baby was born exactly two weeks past my thirty-sixth birthday. I didn't know I had the capacity to love something so completely, instantaneously. Her crying, to me, has been very logical communication and activates this intense protector complex that I didn't believe I had: I am sad when I cannot help her as quickly as I'd like, but I am never frustrated with her.

I love her deep, soulful eyes and her little baby sounds; the picture of my husband's grin in her reflexive sideways smile; her elf ears and her long, lanky limbs; her fierce roaring when she's hungry. She has my heart.

I never could have imagined this life for myself.

Saturday, July 11, 2020

Autistic with Cancer: Six Tips for Navigating the Medical System

Person with white-appearing skin, wearing a disposable exam gown,  from shoulders to hips, hands folded, waiting in a medical exam room.
Photo © wp paarz | Flickr / Creative Commons
image: Person with white-appearing skin, wearing a disposable exam gown,
from shoulders to hips, hands folded, waiting in a medical exam room.]

Anne Borden

I’m currently going through breast cancer treatment, and have encountered barriers to accessing accommodations while autistic. Based on my experience, I wrote this article to help autistics and other neurodivergent (ND) folks navigate the medical system. In this article I cover both sensory and communication issues, with strategies that have worked for me and other ND cancer patients I’ve talked to. I’ve also included some scripts. I hope it can be helpful in some way!


There is very little accurate information available to help health providers understand and support autistic communication and sensory experiences. As a result, autistic patients are left to navigate a system that often misunderstands and mistreats us. It’s difficult. In fact, some autistics do not even seek medical care when it’s needed, due to such institutional barriers.


Through my advocacy work with Autistics for Autistics (A4A), I’ve been co-presenting at medical schools to help medical students with their future practice, so they can communicate well with AAC users and learn about things like auditory processing disabilities, and sensory differences. The students are always very interested in the presentations and line up afterwards with questions. 

Yet despite this interest from medical students, A4A too often has to push hard to convince some medical schools to “let” us present! And right now, there are only a few seminars of this type in the world! Most physicians’ understanding of autism come from outdated textbooks that focus on identifying “signs of autism” in young patients, with no information about how to provide accessible service to autistic patients. Their knowledge about things like AAC communication, selective mutism and sensory issues is typically nil. Until there’s better education, we will need to develop strategies and rely on our communities for some important parts of our health care. 

Tip 1: Find a community 

A big part of navigating cancer care is finding a support community. I found mine in an online breast cancer support group. Mine is not specific to autistic people (although someone should create one of those!). Some members of the support group are further ahead in their treatments and can give me good advice; other members are going through the same things I am now and can commiserate. It’s also very healing to be able to offer advice and support to people who are just beginning their treatments.

In looking for an online support group, try to find a local group so you can get local information. Also remember that smaller groups tend to work better—because with big groups people may not see or respond to your posts. 

Whether it’s online groups, family or friends, you need people who can listen and validate your reality right now. Focus on the supporters and prioritize them. Have boundaries with everyone else.

Tip 2: Have support at appointments

Right now because of Covid-19, you probably won’t be allowed to bring anyone to your appointments in person. But you can have a friend or family member listen through your phone! This way they can provide emotional support and take notes. If you have unreliable speech, they can also ask your questions as a go-between. 

It might feel awkward to say you’re going to use your phone, but it is your right and the hospital staff should understand that. 

Scripts for appointments: 
  • “My partner will be here by phone since they can’t be here in person.” 
  • “I need to have this information in writing: can we do that now?” 
  • “I may have questions afterwards, could you give me your email?”

Tip 3: Frame your access needs

Generally, medical providers respond best to very direct communication. For example, telling a nurse “I need extra time to sit because I’m light-headed” works better than saying “These procedures make me feel nervous” (which would probably just result in them telling you not to be nervous). 

If you have a therapist or general practitioner who can write up access needs on their letterhead, do that. Get the document to your cancer team in advance. If you are an AAC user, you can send information in advance on how they should communicate with you. And for those who choose not to disclose being autistic: remember you can still let them know your access needs whether they know your diagnosis or not.

  • “I need a few extra minutes for questions at the next appointment.” 
  • “I need to rest a bit more before I stand up.” 
  • “I need to schedule appointments through email, instead of phone calls.”

  • [AAC] “Please allow time to type my answer before you ask the next question.” 

Tip 4: Know what to expect

Learn what to expect during surgery, chemo and radiation by talking to people who have been through it, such as online support groups. They’re a great source for the day-to-day information you need to feel grounded and take care of yourself, especially outside of the clinic. I’ve found that most people are glad to share their information and experiences, big and small.

I had questions about my chemo and radiation: the schedules, what it would all look like. But the oncologist was too busy to talk about that…and the booklets they gave me were just really vague. It is completely reasonable to want to know this kind of information, but it won’t necessarily be offered to you! In my case, I requested a phone meeting with a nurse before my session to talk about each step of the process. I would not have gotten the information without that request. 

  • “I have more questions but I know you’re busy. Is there a time I can call back?” 
  • “I’d like to have someone walk me through what to expect on a chemo day. How can we arrange that?” 
  • “I have some questions about the medications at home. When can I meet with a  nurse?”

Tip 5: Identify your coping skills

Going through cancer treatment is like nothing else…but the great thing is you can actually use a lot of the standard coping tools that you already have! Think about your body, how it reacts to medical things and what steps you’ve taken to cope (for example, at the dentist). Imagine how you might feel during a certain procedure, and make a plan for when it happens. Line up all your favourite things, interests and daydreams; hold them close for comfort. Remember the times you’ve managed this kind of stress the best, and how you did it. 

Be kind to yourself when you struggle. Show yourself as much compassion as you would show to someone else in your position. Society puts a lot of emphasis on being a “cancer warrior” and “beating cancer.” In reality, your main goal is to make it through the day. Some days are easier and some are…not. But there is an end in sight.

Tip 6: Look ahead

The chemo room at my hospital has a giant brass bell near the doorway. People get to ring the bell on the last day of their chemotherapy. This ritual is so powerful to watch. It reminds me that I too am going to ring that bell, that this will come to an end. I hold on to that reminder in the moments that this all feels endless. I close my eyes and imagine swimming at the pool or other things I’m planning to do after my treatments. With Covid restrictions, of course, that list of things is even longer. And it’s harder to predict when we’ll get to do those things.

We are getting our cancer care in difficult times. The worst moments of it can feel endless…but they’re not. We make it through one, we make it through two, we make it through ten. We’re brave, all of us. There’s power in looking ahead, in dreaming ahead. Let’s take that power and use it. 

With so little information for providers or for patients about cancer care for neurodivergent people, we must rely our grassroots communities for support. My hope is that those of us going through cancer can connect at a later point and build a broader grassroots network of support, while continuing to educate the medical profession. Through these efforts, we can make the cancer care experience better for autistic and neurodivergent people in the future.

Wednesday, July 8, 2020

When Adaptation Looks Like Laziness

Emily Paige Ballou

Many times growing up, I found myself being called lazy for doing things a way that made sense to me. 

Of course I had no idea I was autistic for much of my childhood, and it was even longer before I first heard that executive functioning difficulties may be an inherent aspect of autism. Even then it wasn’t totally clear to me whether I was simply part of a minority that didn’t have significant executive functioning impairments, or whether I’d overcompensated to such an extent in that arena that it would be difficult for me to ever tell what the reality was. Only much later was I able to put together that some of the things for which I was being scolded were attempts on my part to cope with wonky executive functioning, and other related aspects of autism.

A somewhat common frustration that I hear from members of the autism parent community is that a child simply won’t do what they’re asked to do. Now, sometimes a kid may be avoiding a task they’re capable of just because it’s boring or they’d rather do something else. But this isn’t inherently a feature of autism and likely isn’t an issue for autism-specific intervention. Devising ways of avoiding chores is a time-honored tradition of childhood, after all.

Painting of Tom Sawyer talking another boy into painting the fence for him.
[image: Illustration of the character Tom Sawyer talking another
boy into painting the fence that Tom is supposed to paint.]

Secondly, however, I wonder whether there are sensory issues at play that make the task more unpleasant than it has to be and which can be mitigated. I realized only as an adult, for instance, that doing dishes was particularly difficult for me when I was wearing long sleeves because I didn’t like the feeling of my sleeves getting wet. Even if I pushed them up, water would run down my arms into them. Now I take off my sweater or flannel so I’m in short sleeves when I do dishes, and it’s a far more tolerable task.

But I also suspect that there are ways in which we may in fact be attempting to make a task manageable, or mitigate certain executive functioning issues in managing a task, that inadvertently make us look lazy or like we’re trying to avoid a problem entirely rather than approaching it indirectly.


As I’ve grown to understand the workings of autism better, I’ve been able to see that many of the ways in which I was thought to be careless or avoiding work were actually ways in which I was trying to adapt to an obstacle I didn’t know how to explain, even if I was doing so unsuccessfully.

This is by no means meant to be an exhaustive list, but some of the categories these strategies can fall under include:
  • Minimizing number of transitions or motor planning demands
  • Taking processing time
  • Mitigating inertia or anxiety associated with transitions

1. Minimizing transitions or motor planning demands

This post really began when I realized all at once that most people probably don’t arrange their entire lives so as to substantially reduce motor planning demands.

For instance, we have a big wooden cutting board at home. My roommate puts it all the way away, in a cabinet with the pots and pans, after virtually every time she finishes using it.

I just leave it out as long as it’s reasonably clean, because I’m going to be using it again within a single digit number of hours. I wash it or rinse it if it gets messy, but basically I just leave it out, along with the other things that I am always using, like a knife for butter, and the jar of sugar I use in my coffee.

She also does dishes after every single meal, even if she didn’t really cook anything. I do them once a day, either before I go to bed or first thing in the morning, because why would I add four extra activity transitions into my day for nothing? Just to use the same dish I washed eight hours ago?

(Yes, even if I this means I have more dishes to wash when I do them, it involves fewer overall transitions to do them once than to do them three times in a day.)

Or, working on a one-woman show a few years ago, we mostly rehearsed at the actress’s own house, because she had the space and most of the furniture we needed, rather than renting rehearsal space and furniture. And every day after we rehearsed, her preference was for the room to be returned to its original arrangement, and then reset for rehearsal again the next morning. Since it was her house, this is something she had every right to, but my personal instinct would have been to leave things the way that I was going to need them, day after day, for a foreseeable number of consecutive days.

Why would I add steps into a process that only constituted a burden on my ability to do it?

I realized one day that if other people don’t have some kind of major motivation to absolutely minimize the number of motor transitions they have to make in a day, that if those extra actions didn’t cost them anything, then the fact of their being expected would make a lot more sense.

This is also one of the challenges I’m having with mask-wearing lately, aside from the obvious sensory issues. Putting on a mask doesn’t add just one step to the process of getting ready to leave my apartment, it adds about four. I have to tape a flexible nose piece into a cloth mask so it won’t fog up my glasses as badly, slip it on over my ears, actually adjust it over my nose, then adjust my glasses over it, and I have to do that in the correct order of putting on shoes, hat, mask, glasses, headphones, and washing my hands for a final time before I go out. I don’t always get it right on the first try. Then when I get back, I have to wash it out and put it out to dry. It takes that many extra steps, not just one, for every time I go outside.

2. Taking processing time

Sleep deprivation has been a near-constant issue for me since I was in high school, but once when I was working on a particularly difficult production, I learned that not having any mental downtime while awake could be as bad or worse in some ways than lack of sleep. While I was technically getting enough sleep, and our rehearsal hours themselves weren’t oppressive, between meetings and paperwork and technical issues, I was working on or thinking about the show almost every minute I was awake. I have almost never felt so mentally thrashed as I did by the time it was over.

Time spent not directly addressing a problem isn’t just time to do something more fun; it is often when our subconscious is continuing to work on the problem in a more indirect way.

I’m reminded of this scene from LOST between Jack and Sawyer, in which Sawyer explains that while, yes, he is reading a book, he’s also working out how he’s going to rescue the returned islanders from their time travel predicament. (I am still convinced that Sawyer is one of the best-written inadvertently autistic characters in television history.)

[video: Scene from Lost in which Sawyer tells off Jack, white dudes both.]

And we often emphasize this to non-autistic people learning new skills, that they need breaks from working on something difficult in addition to intensive practice, but with autistic kids, therapies intended to build skills often rely on relentless drilling.

This is also why it’s a problem to try to inject therapy into every part of child’s life, or turn everything good in their life into therapy. Autistic kids, like non-autistic kids, need all of their waking hours not to be work. Downtime doesn’t just allow for restoration, it’s when our brains turn short-term skill into deep knowledge.

3. Mitigating inertia and smoothing transitions

When I was a kid, I would beg to be allowed to do homework in front of the TV, and try to argue that I worked better with the TV on. I knew it wasn’t really true, but I didn’t know how to explain the way I was actually trying to help myself, which was by smoothing out the anxiety and inertia triggered by starting, stopping, and changing activities.

In general terms, “inertia” refers to the tendency in physics for objects in motion to stay in motion, and objects at rest to stay at rest. Energy is required to either stop an object in motion, or to set in motion an object at rest. 

In terms of autism, inertia means that it’s harder for autistic people than it is for other people to stop, start, and change activities—including things like thought processes, speech, and what we’re paying attention to, for reasons that are not well understood yet.

Even though I knew that having cartoons on made it harder to concentrate completely on math, being allowed to leave the TV on made it feel like less of a transition to get started on homework than turning the TV off, going somewhere else, getting my books out, and getting started on homework.

I still use this technique now when it comes to getting started on things that make me anxious or that I just don’t really want to spend time doing, like working on my taxes or folding laundry. Though I’m better than I used to be at telling what kinds of things I can do this way and what kinds of things actually require my full attention no matter how much I don’t want to give it. I’ve also heard more than one other guitar player report independently devising this as a trick, to put something fluffy on TV to watch while running scales or fingerings, just to turn those things into muscle memory through mindless repetition.


What this doesn’t necessarily mean is that if you realize an autistic student is trying to make adaptations in these ways, that they are necessarily the best possible methods or should never be questioned. Trying to do your homework in front of the TV often isn’t actually great, for instance, and can lead to mistakes and decreased concentration. 

But once you understand what purpose the attempt at adaptation is serving, you may be able to use the same principle or make suggestions to find better solutions with fewer drawbacks. Maybe they need a different kind of media playing in the background to help with inertia, or a different kind of ritual to combat transition anxiety. Now I know, for instance, that making tea, lighting a candle, and turning music on is a ritual that can help me get started on work I’m not looking forward to having to do, or help me ease into looking at a problem I don’t know how to get started on or that makes me anxious to even think about. Some unpleasant things I really can do while watching TV without compromising the quality of my work! For others, instrumental music or a different ritual or telling myself “You only have to get this far tonight” and approaching it in small pieces to build a little momentum is better.

Monday, June 22, 2020

Invisible Differences: A Review

[image: Cover of the graphic novel Invisible Differences. The title is at the top in red block letters. Under is a grayscale illustration of a woman with straight dark hair, looking perplexed. She is wearing red Converse-style sneakers and is standing in front of many people walking by, intent on their own business.]

Sonny Hallett

Review of Invisible Differences by Julie Dachez, illustrated by Mademoiselle Caroline

One of the most valuable moments for many, on their journey to realising that they’re autistic, is recognising themselves through reading biographies and seeing other representations of autistic experiences. Autistic representations can provide such an important sense of validation and community, for those of us who may have never experienced much of either before. 

As more works emerge by actually autistic creators, we are also seeing greater range, nuance, authenticity, and celebration of our diversity and differences, rather than pathology-based models or crude caricatures. In this context, Invisible Differences is an excellent addition to the growing body of autistic autobiographies, and stories about autistic self-identification and transformation.

So much of autistic experience is often tied in with communication and the sensory environment, and artist Mademoiselle Caroline does a great job of capturing those difficult-to-describe moments and feelings through her drawing and panel design. I can actively feel and viscerally recognise the sensory overwhelm of protagonist Marguerite’s office, the stressful disorienting chatter of her colleagues, her sense of calm in nature, the loops of anxiety when she worries that she has said something wrong. 

There is also increasing (and more joyful) experimentation with colour as the story progresses, mirroring Marguerite’s growing sense of self, experimentation with more confident and authentic ways of being—indeed: starting to live “a life in full colour.” There’s something really nice here, to me, about how realising that one is autistic could bring so much more colour into a world that might previously have been dominated by anxiety, and a sense that being oneself isn’t OK. There can be such a sense of relief and possibility to realising that “normal for me is to be “abnormal,” which Dachez celebrates throughout this story of realisation.

I am quite curious about how this reads to readers who know very little about autism, and perhaps, like some of the other characters in the book, might otherwise have responded to Marguerite's revelation of her diagnosis with worry, disbelief, or pity. This book is for them too—not just to learn more about the experience of being autistic, but about the importance of finding one’s community and realising that being yourself is OK, and that being different can be hard—but in itself is nothing like a tragedy (and can actually be really important). 

There is a lot in there about revelation and gradual self understanding and acceptance that is illustrated in a way that I think is much more accessible, through following Marguerite's story, how she changes, and the decisions she makes, than just being told that this process happens and is important. It is a very nice example of the power of showing, rather than telling.

On the theme of education however, something that did jar uncomfortably was in the back pages, designed as a sort of simple informational fact file on autism. It read oddly to me, changing between first and third person. After such an intimate, humane, and personal story, putting information about autism in the third person, describing us as an ‘other’—“they tend to prefer rituals,” “they might be clumsy,” felt really quite uncomfortable. Moreover, while on the whole the information was reasonably good, it still felt somewhat unfounded and unhelpfully generalised in some of its assertions, such as the claim that “non-autistic people recharge in the company of others” and autistic people the opposite, or “they have few prejudices and are less likely to judge others.”

I felt that it was a shame that the back section did not instead focus more on differences in communication (and perhaps ‘culture’) between autistic and non-autistic people, and the impact of having a minority or, as Dachez might put it, “deviant” experience compared to the majority. It felt like a shame and rather a surprise that the book should end on such an ‘othering’ experience and go back, however slightly, to some of the tired tropes and generalisations (“condition,” “symptoms”... though maybe there is a translation issue also at play here). Perhaps on its own I would’ve been less critical of this section, but the quality and thoughtfulness of the story greatly raised the bar for what I was expecting.

That said, the final section did also contain a very direct and critical section on France’s problematic psychoanalytic approaches to autism, stating it is “40 years behind when it comes to autism,” and perhaps in this context one can forgive a little the shortcomings of the final section. There was also a very generous and excellent list of resources for further reading, with a range of autistic voices represented, in a range of media, so perhaps keen readers will seek out further challenging and diverse perspectives and ideas.

But maybe it is best that we focus back on the main story, which after all is the main reason that readers might pick up this book. As the narrative takes us through Marguerite's diagnosis process, and her discovery of autistic community, we hear accounts from a range of autistic people she meets (which read like quotations, so I assume they may be from real people) hinting at a broader range of experiences and stories than we are presented with through Marguerite—something that hints towards a real sense of community and culture. She goes further, however: Marguerite's realisation doesn’t just bring her into a community of autistic people, it brings her into a much broader community of neurodivergence and celebration of diversity—there is so much solidarity in the experience of difference, and realising that we may all have (often invisible) differences from the majority can be so important, and feels like the most valuable message for the book to leave us with. As Dachez writes on the cover page:
“By embracing your truest self, making peace with your uniqueness, you become an example to follow. You thus have the power to shatter the normative shackles that hold us all back and keep us from living together in mutual respect and acceptance. Your difference isn’t part of the problem, it’s part of the solution. It is a cure for our society, a society obsessed with normality.”

Thursday, June 18, 2020

When Autistic Kids Destroy Things: Insights and Advice

7th July: iSmash
Photo © Helen Taylor | Flickr / Creative Commons
[image: Cracked black iPhone on a red background.]

Sometimes autistic kids, and the adults they grow up to be, are really hard on physical things. Sometimes they consistently break devices or furniture, or take them apart. What many frustrated parents and caregivers may not understand is that there is usually a reason behind these urges; it's not just random autistic behavior. And if parents can try to figure out why their children have these needs, and then accommodate them as much as they can, everyone can have a much easier time. Not always, but in many cases.

With this in mind, we talked to two advocates with both personal and professional experience in this area: Ivanova Smith, and Aiyana Bailin. Here's what they had to say; we hope it is helpful to you.

Thinking Person's Guide to Autism: Tell us a little bit about yourselves

Ivanova Smith: I am a self advocate leader in Washington State. I am Chair of Self Advocates in Leadership, and Member of People First of Washington. 

Aiyana Bailin: I've been a respite care worker for over seven years. I've worked with kids and young adults with various developmental disabilities (Down syndrome, cerebral palsy, etc.), but I specialize in "severe" autism. Or rather, I prefer "profoundly autistic clients," because we generally get along really well. I'm probably on the spectrum, but have never tried to get diagnosed.

TPGA: When you see parents complain about autistic children or youths destroying furniture or other household objects, how does that make you feel?

Ivanova: When I see the media complaining about autistic people it makes me feel sad. I also think it is not an effective way of helping the situation. There are ways to work with autistic people that help, but that do not stop autistic people from having freedom of experience. 

Aiyana: I don't have a general answer to this. There are a lot of factors—tone, intended audience, etc. But often, I think parents need to be more careful about how they discuss their autistic (or otherwise disabled) kids. These kids already feel like they cause their parents a lot of stress, and they can be very sensitive about it.

TPGA: What do you think makes some autistic children need to take things apart? 

Ivanova: For many autistic people, we do not only have sensory experiences that are negative. Lots of autistics, especially those with intellectual disabilities, and/or who are non-speaking, also sensory seek. Sensory seeking is when the autistic person seeks out a sensory stimulus. Stimming is actually a form of this. 

Staring at certain objects and taking them apart is stimulating. Have you ever taken a pen apart? For me I really like lights and water, I like touching fountains, water, and feeling water move. 

Lots of times autistics need to avoid sudden sensory things, but can also seek out sensory things. Autistic people need understanding for both sensory issues, and sensory seeking. It is important to allow autistics to sensory seek. It as important as allowing us to stim. 

TPGA: Do you have ideas for how parents might be able to help those children?

Ivanova: I understand that property damage can be frustrating. I know my family struggled with it when I didn’t understand. I wore out the lazy boy armchairs because of my intense rocking. It would been helpful to have armchairs that were adapted for autistics who wear things out. 

Some ideas I have for this issue: Find things that person enjoys to sensory seek with, and make sure they have access to those things easily. It also can be a form of communication, like an autistic person who is non-speaking ripping up a mattress—they may be trying communicate that the mattress is uncomfortable. If it seems like sensory seeking, then get cheap things that are OK for them to sensory seek and take apart. 

Another factor is that a person may need support in learning what property is. When I was adopted, I didn’t understand property because everything in the institution I had lived in was collective, and none of the orphans had property. I would just take things, not knowing it belonged to someone else. Helping to understand by using plain language and social stories can be helpful. It took a couple of years for me understand. It may take time to learn, but there are ways to teach. 

Aiyana: I'm going to answer your last two questions together, because they are closely related. How to help depends on the reason for what the kid is doing. Parents usually focus on stopping a particular behavior, and that rarely works. They need to provide alternatives instead, or solve an underlying problem.

Curiosity can be a reason. One of my clients always wanted to see how things worked, and what was inside things. He couldn't ask questions, so he tried to figure it out himself by dismantling everything he could. And since things were usually taken away once he broke them, he learned to break things quickly, or in secret. 

The answer was to respond to his curiosity. I started explaining more about how things worked. I tried showing him books (which he wasn't very interested in), and videos and shows about how things are made. He went through a phase of grabbing for people's cameras whenever he saw one, which was scary because cameras are fragile and expensive. Eventually I bought an old one from a thrift store for $10 and we took it apart together. He stopped trying to grab them after that.

Boredom, restlessness, and dysregulation can lead to destructive behavior. They're related, but not quite the same. The answer is more input to occupy their mind and body. This can be physical exercise, like long walks or swimming, or mental stimuli like audiobooks, educational videos, puzzles, and building/crafting toys. Often, they need a "sensory diet." I have a hard time with that phrase, because it's not a food diet. It means getting the right amount of different sensory inputs. For example, a person might need a hammock or swing at home, being rolled tightly in a blanket every morning, a few hours of music, low lighting, a bath before bed, and a toy for chewing on. 

Dysregulation can also have medical causes. A lot of autistic people have allergies, difficulty sleeping, and other conditions that cause general discomfort. Dietary or medication changes may help. If a kid suddenly develops a new distressing behavior, the most likely reason is that they are feeling sick or in pain.

Emotional stress is another reason kids get destructive. They may need more downtime, when they aren't scheduled to do anything or reminded to act "normal" (no demands to speak, make eye contact, or sit still). They might need hours alone in silence. Sometimes it means just letting them do whatever makes them happy, including stimming and making noises. Be aware that nonverbal kids often understand everything they hear, even if they don't respond. That includes overhearing how their parents talk about them.

They might be expressing a specific emotion. Try to acknowledge their feelings respectfully. For example, you could say, "I understand that you're mad right now, but don't want you to throw dishes. I can give you some alone time if you like." Don't use the choppy baby language that therapists teach. You'd be amazed how many of my clients behave better once their family start talking to them more normally. Parents can also teach/allow other ways to deal with strong feelings, like yelling or punching pillows.

They may be deliberately communicating. This is likely when kids hide things or throw them away. All the backpacks went in the trash? Maybe she doesn't want to go to school. He might hide Mom's keys because he wants attention and doesn't want her to go out. A ripped-up piece of clothing might have been uncomfortable. Encourage and be alert for other forms of communication. If they struggle while getting dressed, maybe they don't like that type of clothing. Respect that choice, and they won't feel the need to destroy it!

Sometimes there's a sensory pleasure to taking something apart, or ripping it up. It can be slightly compulsive, like peeling at chipped nail-polish. In this case, you can usually provide a cheap alternative. Buy bargain, clearance, or second-hand objects for them to destroy. 

TPGA: In your work (Ivanova, as a member of the I/DD community; Aiyana, as a direct support worker for disabled children), have you helped parents understand their children’s needs better? How did you do that?

Ivanova: Some ideas are: See if there is a way they have materials that are OK to sensory seek with and easy to get to. One possible idea is having your child help you repair the item, or rebuild it. When I figured out I could take apart a pen I thought now I want figure out put it back together.

Supporting your child in taking something apart and putting back together can be a positive stimulus activity, as long you're positive and build their confidence in learning new skills. This also can help the person understand concept of property, if that is a struggle to learn.

Lots of intellectually disabled autistic learn by doing, and using hands. If writing, communication, or reading is a struggle then doing physical activities one is way we can learn. It is not going solve everything, but it’ll be a start. Remember, behavior is communication lots of the time. 

Aiyana: I sure hope so! I try to explain to parents what their child may be communicating nonverbally. Of course I don't always know, and I'm sure I get it wrong sometimes, but often I can read an autistic child's body language or recognize a pattern in their behavior enough to figure it out. In my experience, it's common for people on the spectrum to recognize the body language of other autistic people in the same way non-autistic people understand non-autistic body language and facial expressions. Every autism parent should have a few autistic adults around sometimes as translators!

TPGA: Some parents say they’ve “tried everything” and nothing worked, and things are still getting broken. What would you say to parents who feel like nothing will help them and their children?

Ivanova: It may feel frustrating when things keep getting broken. There should be supports for families in getting things replaced or repaired, and sometimes that's an issue to bring up with the manufacturer. Businesses who create these properties might also find it good to have an education on making things more durable, and not fall apart. 

Lots of autistics put more pressure on the things we use, to feel them. I experienced this by the fact that I slam doors, not realizing how much pressure I used. Getting furniture that is more firm and has a thick structure, for many autistics, can make these items more stable, and is useful to keep things working longer. I have a hard time sitting and or getting up from couches that are not firm. There are stores that sell adaptive furniture that may be more durable than department store furniture. 

Aiyana: When parents say they've tried everything, they usually mean they've tried everything they can do TO their kid to get the kid to change. And that's never the whole answer. The parents have to change too. It's like couples' therapy. Usually both people go in hoping the therapist will tell the other person to act different. But both partners have to make changes for the relationship to work. 

Parents may need to change their expectations or their priorities or how they interact with their child. At a minimum, they need to make the household more autism-friendly. This might mean removing things that bother the autistic person, like certain lights, electronics, scents, or textures. It might mean providing more sources of input—white noise, fuzzy blankets, a bin of rice to play with, a rocking chair. 

TPGA: Is there anything else you’d like to add?

Ivanova: For the I/DD community this is a struggle. We need more flexible housing options and education of landlords. My home is my home, and that has helped because I can control repairs and not worry about an angry landlord. I feel like we need to make home ownership more accessible for autistic people who need flexibility and control over maintenance, along with personal support systems. 

Aiyana: Yes. My most important message for these parents is that they need to change their mindset. People often talk about autistic people having rigid thinking and wanting these exactly a certain way. Actually, most non-autistic people have this problem too! They just don't recognize it because their rigid ideas come from the society around them.

A good home doesn't have to look a certain way. Really. No one will die if all the furniture is covered in teeth marks. If your kid breaks normal dishes, use plastic or wooden ones instead. The happiest households I know are the ones that have made peace with these kinds of changes. Stop fighting the inevitable, and learn to be different.

If you have trouble with this idea, watch some shows about how people live in other parts of the world, or how they lived a hundred years ago. Not everyone sleeps on a bed. Some people wear the same clothes every day, and eat the same food every day. Torn and stained blankets are just as warm as pretty new ones.

If your kid keeps breaking electronics, only buy cheap ones. If they knock everything off shelves, keep stuff in drawers or bins instead. If they climb, make sure heavy furniture is bolted to the wall.

Reprioritize. Safety comes first. Next is comfort. Appearance is last. Most people weren't raised believing that. TV and magazines try to convince us that appearance is more important than comfort. But that's the wrong approach when someone in the family has special needs. You can change. And both you and your kid will be happier.

Wednesday, June 17, 2020

A Letter to Vice President Biden on Disability Policy

June 17, 2020

Dear Vice President Biden,

Your campaign’s new disability policy makes us hopeful about the future for our autistic children with high-support needs. Thank you for taking the Americans With Disabilities Act (ADA), disability rights, inclusion, and quality of life issues seriously, and also for addressing how the COVID-19 pandemic impacts the disability community.

Many of our children are already adults, and many require full-time supports, which means we share your campaign’s concerns. We also want to emphasize areas in which the campaign can deepen and reaffirm its commitment to disabled people of all ages, and do the most good:

1.    Ensuring Community Living and Self-Determination For All

The COVID-19 pandemic, with its increased mortality rate for group home, state operated developmental centers, and intermediate care facility residents with intellectual and developmental disabilities including autism, is underscoring the very real dangers our children and their community members face when they are placed in congregate housing settings with insufficient supports and underpaid staff. We appreciate that your platform is dedicated to Long Term Services and Supports and Money Follows the Person.

However, as many of our children will always need 1:1, 24/7 supports, and these supports are often only offered in congregate settings—which tend to sacrifice our children’s rights to privacy and autonomy—we want to reiterate the necessity of your campaign’s dedication to the spirit of Olmstead. We are very concerned that a few vocal parent-led groups seek to use HCBS funds for housing arrangements that are nominally community-based or “intentional,” but functionally institutional. We appreciate your campaign’s clear dedication to Olmstead and ask that you prioritize ensuring that people with the most significant disabilities have equal access to truly integrated community housing with robust services, rather than the limited, largely congregate options they typically have now.

We would urge the Biden campaign to dedicate significant resources to ensure supported decision making options are a viable alternative to guardianship for everyone. By supporting our children’s autonomy—however that looks for each individual—paired with your commitment to using Home and Community Based Services (HCBS) options for quality housing supports in the truly most integrated settings, you can help our children with high support needs not only lead happier and more fulfilled lives—whether they live with us, with roommates, or independently—but keep them alive. And the best way to do this is by consulting disability and policy experts who either have or are informed by those with lived experience.

2.    Better Autism Diagnostic Tools

Research has consistently demonstrated that autistic people have always been part of our families and communities, and that if anything are under-diagnosed. We need more and better diagnostic supports and tools, with effective reach into families of color, with lower incomes, and that consider the variety of autistic presentations if we are to effectively address this matter. This will not only provide an underpinning for improved quality of life, but will feed directly into your campaign’s goal of addressing racial inequalities in special education.

3.    Disability Inclusion on Disability Policy

We are heartened by your commitment to creating a senior position in the White House dedicated to disability community engagement and policy coordination, and to recruiting people with disabilities in general.

Thinking Person’s Guide to Autism is fully committed to autistic and disabled inclusion: Some of us are disabled, and some are not, but we have all learned from disability wisdom and advocacy about how to help our children live the kinds of joyful lives they deserve, and secure the rights they need—and appreciate that you understand and will aggressively pursue a similar path to best policy practices.

As one of us recently wrote in the Washington Post, “Having a disabled child is not particularly rare,” and it is reassuring to see the Biden campaign clearly shares those values, and that your disability plan was developed in consultation with disabled leaders. We encourage you to keep listening to a diverse group of disabled experts. This is how effective disability policy is made.


Thank you,

Shannon Des Roches Rosa, Carol Greenburg, and Jennifer Byde Myers
Editors, Thinking Person’s Guide to Autism