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

Lily
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!



Background


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.



Scripts: 
  • “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. 



Scripts: 
  • “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
twitter.com/epballou

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
twitter.com/scrappapertiger

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


THINKING PERSON’S GUIDE TO AUTISM

WWW.THINKINGAUTISMGUIDE.COM

EDITORIAL@THINKINGAUTISM.COM

Tuesday, June 16, 2020

When Autistic Children Get Bullied: How To Understand, and Help


[image: A number of wooden figures, with a group on the left,
looking angrily at one individual on the right who looks scared
.]

Content note: This article talks about abuse and suicide

Ann Memmott

Most autistic children in schools are bullied at some stage. We know this from research.

We also know that too many of the bullies get away with it, for month after month, and year after year.

We know that many autistic children sink into depression and anxiety, become school-refusers, start to fail in their targets, and some go on to self-harm or to consider taking their own lives. Some die. It's a very serious subject, and every school needs to be very serious about understanding, investigating and handling bullying situations with thoughtfulness, care and compassion.

Many school staff are of course professional, caring and compassionate. I want to be clear about this, because it can be too easy for it to feel like people don't understand the pressures of teaching. The relentless targets, the endless workload, the limited budgets, the fight to get support for a child when there are a lot of children to fight for. Many of my friends and colleagues are teachers, and I was involved directly in school Governance for many years, in a tough area with 400 fantastic young people, and later in a specialist autism school. Working as a professional now in the field of autism, my own autistic past and present have taught me a huge amount. I'm very grateful indeed for the many fellow professionals I encounter, and all they bring to the teaching professions.

First, we need to understand that autistic children are generally very honest, and very accurate. Few invent stories to get another child into difficulty, and few invent things that have not happened. So, our first step is to presume competence and say that we will take what they say seriously and investigate it properly.  

Second, we need to understand that autism is largely a sensory processing difference. Many autistic children process pain very differently, for example. Some can be put into intense pain by a simple repeat flashing of a light into their eyes, or driven to shutdown by someone deliberately clicking and flicking stuff near them time and time again, knowing they cannot cope. Some will double up with pain from being jostled in a corridor, by bullies who know how to jostle in a, "I was just trying to get past, Miss, honest," way. Every. Single. Time. Some will not know they are in intense pain, from really serious injury, because the pain processors don't connect properly. Our own son played rugby for several weeks with a broken foot, and the GP and physiotherapist had no idea it was broken. They asked him if it hurt.   It did not. That was a meaningless question to him. If only they had ordered an X Ray…

And there we have our main problem with a good investigation. We ask the wrong questions, quite unknowingly. We assume that the autistic child will appear to be in pain, and will respond with the right pain-responses.

Autistic brains deliver information differently. They gather it differently, too. Our son, a well respected trainer and conference speaker, uses the analogy of "Roundabout Theory" to describe how fast autistic brains can reach 'overload,' and the importance of having space, to let the brain's 'traffic' clear and start flowing again.

We also have to consider that there are four basic types of memories: 
  • Remembering how to do something (procedural memory).
  • Remembering facts about a subject or individual (semantic memory)
  • Remembering sensory details about something, appearance, sound etc (perceptual memory)
  • Remembering a timeline of what happened when (episodic memory)
That last one is the one many autistic young people struggle with. (Though some autistic people have an amazing recall of what-happened-when, so we can't generalise too much.) 

How does that episodic memory difficulty work?  An example:

"We went to the cinema a few days ago and saw something. What was it?"
(*thinking*)
(*still thinking*) 
Ha, a fact has arrived—7.3 IMDb rating…wait now, what was that linked to…following the memory trail back…thinking, still thinking…some parts good, other parts bad…nearly there…
(*still thinking*)
Ha! Aquaman! I've found the file! And wallop, there's the data for the whole film and what happened. 

It wasn't filed by time and date. It's all in there. But often in a 'sealed box' with no link to the timeline from today.

And if a child is very traumatised, that box may be completely unopenable. A number of autistic young people are living with PTSD or CPTSD from incidents or series of bullying attacks. That, of course, is very specialised territory to unravel, and needs the help and support of trained PTSD professionals.

So, what happens when a teacher investigating a bullying incident last Thursday asks, "What happened to you last Thursday, Sam?"

Sam may not have a clue. Last Thursday needs putting in context. Sam may well respond with answers that seem truly unhelpful, like "I don't know." Or "I had cheesy chips for tea," or "I went to school."  

Those are, of course, accurate answers to the question. We need to be specific. We need to build on the information, carefully and slowly, with the right support for what that particular child needs.

Supposing a teacher asks, "Did it hurt?" And Sam responds with, "No." Often, that's the point where the confused teacher says, "Well it can't have been that bad then."

Think about our son, above, playing rugby with a broken foot for weeks. It didn't hurt. But it was the wrong question. 

So, what question should we ask? We may need to consult a school nurse or other trusted healthcare professional, in line with school policies and consents, to investigate for injuries. Look and test, rather than assume the answer "It doesn't hurt" means "It's really minor." If there's bruising, suspect it could be serious. Although some autistic children are naturally uncoordinated and may well injure themselves accidentally. Generally the bruise and injury patterns are different for that, though. Check your safeguarding policies and follow those.

Supposing a teacher asks, "Did you ask them to stop?"  

Many autistic children will go straight into shutdown in a social emergency. Their ability to speak or move becomes nil. They could no more speak than fly.  

Others will go into a meltdown event, which is not a temper tantrum, but may involve what looks like angry retaliation.  It's more like a epileptic 'zone out,' and out of their control.

Either shutdown or meltdown are hugely unpleasant for them to experience, often with no memory at all of it happening, and much exhaustion and bewilderment afterwards. It is not an attempt to attack someone.  

Supposing a teacher asks, "Are you friends with (the bully)?" and Sam says yes? It could be that Sam has no idea that she is being bullied. It could be that the bully has claimed to be a friend, and Sam truly thinks this is what friends do. It could be that Sam is so lonely and desperate for human company that she is willing to put up with a bully, because at least the bully will talk to her sometimes. Yes, some of our wonderful autistic children are that desperate for human contact. Often, teachers spot far more incidents of bullying than the autistic children do.

Bullies may learn that they can hit an autistic child hard and they don't say anything, and apparently don't feel pain. Bullies might discover an autistic child who can be put into intense pain with things that are really easy to disguise from the teacher. Bullies soon learn that the world often wants to see autistic people as 'nasty,' as 'troublemakers.' It is easy for bullies to relish in telling others that the autistic child is the problem, the autistic child is the bully really….

We can be aware.

We can give the autistic child time to process what happened.

We can allow them to use written answers, drawings, maybe model figures to describe what happened.

We can get in an autism specialist to help decode what happened, and work alongside the team.

What one cannot ever do, as professionals, is say, "I don't believe you," or "You're just imagining it."  Or "It was really minor, just get over it." It wasn't minor to them. It was painful, and scary, and humiliating.

It can be deceptive, just looking for 'the right' responses from an autistic child. They may smile when in pain. They may laugh when terrified. Their responses may be delayed, or seem inappropriate. Those do not mean an absence of danger. Check. Check again. Check with the family. Check whether the child is also being targeted on social media. Targeted on the school bus. Targeted to and from school.

Meantime, keep a safe and respectful watch over things. Find ways to separate them from people who are causing them difficulties, if you can. Move the troublemaker rather than disrupt the routine and safe-spaces of the autistic child. Is there a safe space the child can access for break times, with an enjoyable hobby, if they'd prefer that? A different area of field they can run round, if they need activity?  Is there a 'safe person' scheme at breaks, an individual that children can go to be with who can be a second set of eyes and ears for them? A 'friends bench' where a child can go if they are feeling alone or unsafe, where friends and safe appointed people can come over and sit in companionship with them?

I'm a little wary of the befriending schemes used by some schools where children are effectively bribed to be with the autistic child. Often that doesn't end well, and the autistic child get the impression that people will only be with them if they pay them to be. That's not a good life lesson for any child.  So choices of companion need to be thoughtful ones, with a child or young person who truly wants to be a friend to people.

Has the whole school been given talks about being a safe and respectful place, and about what to do if we think a person is in difficulties with bullies? There are excellent training groups who can do this. If it's a whole school, or a whole class, we don't need to reveal who is autistic, or who might be in trouble.

The autistic children in our classes are fantastic young people, but often in fairly unbearable levels of fear and pain. Often blinded and deafened in the glaring lighting and soundscapes of modern classrooms, and dreading the next beating, the next ostracism, the next shutdown. The next person to tell them it was really minor.

It's heartbreaking.

We can do something about that, together. Because our autistic kids deserve better.

Thursday, June 11, 2020

Autistic, Trans, and Betrayed By J.K. Rowling

pride flags zagreb
Photo © Chris Bentley | Flickr / Creative Commons
[image: Bisexual Pride, Trans Pride, and Gay Pride flags billowing against a blue sky.] 

Content note: transphobia, transmisogyny, and ableism.

Kris Guin
twitter.com/The_Kris_Guin

I was in elementary school when the Harry Potter books were first published. My parents bought each new book as soon as it came out, and I remember anxiously waiting to read the copies I shared with my two siblings. Our family would also go see every movie, and, as an adult, I loved getting nostalgic and doing Harry Potter movie marathons. I related so much to each Harry Potter character, in different ways. Most notably, I, as a queer, autistic trans man, relate to Harry growing up not knowing who he is, and why he’s so different from the other kids. 

Professionally, I also have a connection with J.K. Rowling. In the summer of 2014, I interned at the Autistic Self Advocacy Network (ASAN). During that internship, my ASAN colleagues and I met with representatives the charity Rowling started, Lumos, which advocates for the deinstitutionalization of children worldwide. This is a beautiful mission. All children deserve to grow up safe, supported, and loved in the community and with their families. It was so exciting to learn that Lumos, and by association, Rowling, wanted to include children with disabilities in their work. 

Recently, some of the magic around Harry Potter and its author was dispelled when Rowling posted and supported hateful content targeting trans people, particularly trans women. And then, in an attempt to defend herself from critics, she wrote

“Most people probably aren’t aware—I certainly wasn’t, until I started researching this issue properly—that ten years ago, the majority of people wanting to transition to the opposite sex were male. That ratio has now reversed. The UK has experienced a 4400% increase in girls being referred for transitioning treatment. Autistic girls are hugely overrepresented in their numbers.”

This statement is ableist, transphobic, and transmisogynistic. Autistic people are frequently (and hurtfully) presumed incompentent in making our own decisions and in our abilities to understand who we are. Being LGBTQ, like being autistic, is not a choice, plus research indicates autistic people are more likely to be LGBTQ than the general population. Autistic LGBTQ people deserve the same rights, opportunities, love, and support as those who are not autistic or LGBTQ. 

In Harry Potter and the Deathly Hallows, Albus Dumbledore said, “Words are, in my not so humble opinion, our most inexhaustible source of magic. Capable of both inflicting injury and remedying it.” I wish I could wave a magic wand and remove the words Rowling has posted, but, I am, sadly, a Muggle—so I cannot. All I can hope is that Rowling will listen to trans people and autistic people and the words we say about being LGBTQ and autistic, and write words of meaningful apology and commitment to supporting the LGBTQ and autistic communities. 

I do want to add that, as of this writing, Daniel Radcliffe (who plays Harry Potter) and Emma Watson (who plays Hermione Granger) have, in contrast, voiced their support of trans people, and I am so thankful for that. 

----

Please follow #WeAreNotConfused for some excellent community pushback on Rowling's ableist transphobia.

If you or a trans loved one need support, please visit The Trevor Project or Trans Lifeline.


Wednesday, May 27, 2020

“Our Own Little Worlds”

Tiny World
Photo © Jill at Blue Moonbeam Studio | Flickr / Creative Commons
[image: A wooden gate in a botanical garden, with the Austin skyline
in the background, as seen reflected in a crystal ball.]

Devin S. Turk

As I have become more involved with the autistic self-advocacy movement, I’ve found myself paying more and more attention to how non-autistic populations talk about us. I have often heard my beautiful, vibrant community described by non-autistics with words like “disease” and “epidemic.” Even if it’s not as blatant, the language our wider society uses to talk about autistic people is reflective of a deep-seated discomfort and even disgust with the non-normative. 

One example is the idea that autistic people are in our “own little worlds.” “They’re in their own little world” alludes to the intensely ableist trope of the “mysterious autistic” person, someone who is “trapped” within their “Autism-ridden” body or “locked away”in a brain that “can’t” communicate, empathize, or socially matriculate…as if Autism is a sort of bubble around a “normal” person. Additionally, the word “little” in “own little world” adds infantilization to the mix: “little” is another way to deem a person’s neurology to be childish, and therefore even lesser-than. If I am in my own world, it sure as heck isn’t “little.”

For a moment, let me play devil’s advocate and entertain the idea that there hypothetically could be separate autistic and non-autistic “worlds.” (Just go with me on this one.) Say the autistic and non-autistic mental landscapes actually do exist as opposing habitats, like the North and South Poles at the opposite ends of a planet. 

If this were true, why is the autistic landscape automatically considered less fulfilling than that of the non-autistic? Why is the realm of neurotypicality the baseline standard while the “world” of Autism is devalued and dismissed as disordered fantasy?

The “own world” sentiment expresses the gross assumption that the autistic brain is somehow inherently unhinged from reality, and that there is something deeply wrong with that. Moreover, the phrase implies that we operate from behind some kind of pane of frosted glass: the obviously-autistic person is deemed unreachable as well as unreadable. Our natural responses to the surrounding environmental stimuli (which can include various forms of stimming, echolalia, meltdowns, shutdowns, burnout, etc.) are characterized as symptoms of distorted realities or of pathological detachment. 

But, of course, nothing could be further from the truth. Many autistic people express a heightened sensitivity to sensory input, empathy, or environmental connectedness…non-autistic people just aren’t good at recognizing it.

Here, I am reminded of a video uploaded to YouTube by the late Autistic activist Mel Baggs, titled “In My Language” which has had a profound effect on myself and many others in my community. If you haven’t seen “In My Language,” watch it, and then watch it again. 

I continue to be very moved by Mel’s description of existing in continuous, wordless conversation with surrounding objects, forces, and other beings, and I also relate to it. (However, when I’m around non-autistic people, so much of my energy is allocated toward masking my autistic traits, I am forced to tune-out those conversations. I hope for this to change one day soon, but I digress.)

Even when this is not the case, when an autistic person lacks empathy, is “out-of-touch” with present social norms and values, or acts in a visibly-neurodivergent manner, their personhood remains intact. I wish these were not statements I felt I needed to include in this writing. I hope that they are obvious to every person who interacts with my community, but there are many systems, large and subtle, that aim to undermine the humanity of Disabled people.

So, it bears repeating: Autism does not render a person less worthy of the respect and dignity that our society automatically awards to non-disabled individuals. After all, my community and our “own little worlds” are not the result of my people becoming encased in some sort of Autism bubble…we are simply autistic people. We are not inherently separate from or in opposition to the “real” neurotypical world…But if we were, why would that be a bad thing?

My hope is that, as the autistic self-advocacy movement continues to blossom through and around us, our broader neurotypical peers can uplift our voices, experiences, and expressions instead of dismissing them.

Thursday, May 14, 2020

Finding the Right Speech-Language Pathologist (SLP) For Your Autistic Child

Julie Roberts, M.S., CCC-SLP
www.TherapistNDC.org

Photo courtesy Julie Roberts
[image: Ms. Roberts, a smiling white
woman with long straight blonde hair.]
After your loved one receives a diagnosis of Autism, your physician, school, family members, friends and possibly even total strangers may bombard you with (possibly unsolicited) advice for the next steps to take. One such step your family may actually want to consider is to seek the services of a Speech-Language Pathologist (SLP).

But what is an SLP? They are professionals uniquely qualified to evaluate, diagnose, treat speech, language, social communication, cognitive-communication, and swallowing and feeding disorders in children and adults. An ASHA (American Speech and Hearing Association) certified SLP must complete 400 clock hours of supervised clinical experience in the practice of speech-language pathology during graduate school, and 375 hours of that must be spent in direct client contact.

Once an SLP graduate student has finished the required coursework and supervised clinical experiences, obtained a master’s degree in speech pathology or communication disorders, has passed a national Praxis exam and has completed 36 weeks of full-time professional experience as a Clinical Fellow, only then may they obtain their CCCs (Certificate of Clinical Competence in Speech-Language Pathology).

SLPs also take distinctive graduate coursework unique to their scope of practice, in areas including: Voice Disorders, Stuttering, Motor Speech Disorders, Neurogenic Communication Disorders, Dysphagia, Language Acquisition, Articulation Disorders, Anatomy and Physiology of Speech and Hearing, Childhood Apraxia of Speech, Articulation and Phonological Disorders, Dysphagia in Public Schools, Dysphagia in Infancy, Medical terminology and scope of practice of the medical SLP, Dementia, Pulmonary Issues, and Tracheostomy and Ventilators, Pediatric Feeding, Speech Science: Anatomy, physiology and functional organization of speech. Mechanisms of normal speech production and perception with applications to the clinical setting.

Please know that therapists who are not SLPs in ABA clinics may claim to provide speech and language therapy in conjunction with ABA therapy. Beware: These clinics may have BCBAs and RBTs acting in the role of the SLP, but neither discipline is uniquely trained in communication disorders, language acquisition, AAC and feeding and swallowing. In fact, if an untrained therapist is providing therapy within the scope of practice of the SLP, they may do significant emotional and physical harm to your child because they do not have the educational background and training to determine whether something might be a motor issue, or if your child has accompanying anatomy, and physiology deficits, or if your child has accompanying health issues secondary to feeding difficulties (dysphagia, need for ENT services, a GERD diagnosis, etc.) Additionally, when your child is not physically or cognitively able to do something and a reward/punishment is in place, not only is their physical well-being in jeopardy, but their emotional well-being, too.

Parents should know that an autism diagnosis may or may not include accompanying intellectual disability, and may or may not include accompanying receptive and expressive language impairment. Licensed, certified SLPs are uniquely educated and trained to work with Autistic people in the areas of global language acquisition and expression, total communication (speaking and non-speaking communication and written expression), Augmentative and Alternative Communication (AAC), feeding difficulties and pragmatic language.

As when seeking any type of therapy, the primary goal is first, do no harm. Pro-neurodiversity SLPs practice from mind-set of “Autism Acceptance.” SLPs who practice in this manner do not “treat Autism,” they treat communication delays and disorders, provide evaluations and therapy for AAC use, provide non-behavioral, humane feeding therapy, and provide therapy for articulation, phonological processing, apraxia, voice and dysfluency issues. If your SLP tells you that they will treat your child’s autism, you will want to ask them to expand on this statement to understand how they view Autism, (and subsequently how they view your child/adolescent).

Therapy Models which are ABA derived and therefore not recommended:
  • ABA – all forms; including “new and improved” or “play-based” ABA
  • Verbal Behavior (VB)
  • The Lovaas Approach
  • Pivot Response Treatment (PRT)
  • Natural Language Paradigm (The “old” PRT)
  • Early Start Denver Model (ESDM)
  • Early Intensive Behavioral Intervention (EIBI)
  • ABA Derived Errorless Learning Therapy Models
  • Intensive Behavioral Intervention (IBI)
  • Positive Behavior Support (PBS)
  • Relationship Development Intervention (RDI)
  • Picture Exchange Communication System (PECS®)

Questions to consider when choosing an SLP:
  1. Autism: Does the SLP claim to “treat autism?” A pro-neurodiversity SLP treats the problem your child is having with communication, speech production, feeding, etc. If you SLP claims to “treat autism” you will need to ask them to clarify. Coercing a neurodivergent person to “normalize” through masking autistic traits (eye contact, mandated social scripting, tone, body language, suppress harmless stimming, etc.) is disrespectful and can cause substantial trauma.
  2. Presume Competence: Does the SLP presume competence, or do they predetermine your child’s abilities, especially your non-speaking child or and/or intellectually disabled child or adolescent? The right SLP will never predetermine your child’s potential, nor would they consider standardized assessments as solid evidence for the current level of cognitive or language abilities or future potential outcomes. The right SLP will approach therapy from a strengths-based model, taking into account their client’s special interests.
  3. AAC without Prerequisites: Does the SLP use AAC (Augmentative and Alternative Communication) liberally without gatekeeping, and as a supplement for speaking children? (AAC is very helpful during sensory overload, to communicate when overwhelmed, to ward off or get through a meltdown, to use when spoken communication is too much to handle.) Do they accept total communication? The right SLP will acknowledge and respond to all communicative attempts, including behavior; they won’t insist on one type of communication method, such as speech.
  4. Applied Behavioral Analysis (ABA): Does the SLP use ABA? The right SLP does not force compliance through the earning of snacks, check marks, behavior charts, stickers, access to favorite toys, activities, special interests, or similar. They will completely reject aversion therapy (punishment) for any situation, including the withholding of attention or affection, favored foods, drink, activities, special interests, or objects. Pro-neurodiversity SLPS don’t train human beings like pigeons, chickens, or dogs. The right SLP trusts that intrinsic motivation will guide your loved one’s therapy progress, rather than a system of external rewards (and possibly punishments).
  5. Body Autonomy: Does the SLP respect body autonomy? The right SLP will always ask your child or adolescent permission before they touch them. They will use hand under hand, only when necessary and only with the child’s consent. The right SLP will not enforce “whole body listening,” write eye-contact goals, or insist upon quiet hands. They will not force-feed. They will not suppress harmless stimming and they will look for the reason behind harmful stimming, rather than just attempting to extinguish it. Compliance over the child’s or adolescent’s body, food intake and will is never the goal; if it is, you have the wrong therapist.
  6. Sensory: Does the SLP respect and honor sensory differences? The right SLP will not force children and adolescents to comply with tolerating sensory input that is uncomfortable or distressing. A good SLP will willingly collaborate with an OT to help your child with their sensory issues.  They will heavily advocate for sensory supports and accommodations in all of your child’s environments. The right SLP will understand what a meltdown is, and what it isn’t (a tantrum) and will approach your child’s meltdowns with compassion and empathy.
  7. Neurodivergent Mentors: Does the SLP learn from neurodivergent mentors as to what therapy approaches and methodologies are respectful? Do they keep up with research conducted in partnership with and by Autistic people?
  8. Empowerment: Do they work in partnership with the client and their family to problem-solve? Do they teach self-advocacy and respect self-determination? Do they advocate for inclusion? Do they advocate for supports, accommodations and inclusion in IEPs?
  9. Emotional well-being: Does the SLP put your loved one’s emotional well-being first and foremost? Do they stop what they are doing when your child indicates distress, or do they “encourage” them to continue through the distress? Encouraging a child to continue through their distress can trauma by forcing compliance for the sake of compliance. Does the SLP hear and validate, “no?” Does the SLP try to get to the root of the problem (pain, sensory, trauma, anxiety, etc.) rather than extinguishing behavior? The right SLP will consistently put your child’s emotional well-being above their ability to comply.
  10. Kindness and Empathy: Is the SLP kind and empathetic? Do they truly believe that all children do well when they can? If your SLP uses words like: “child is manipulative,” “exhibiting maladaptive behavior,” “need to break the behavior,” “extinguish the behavior,” “desensitizing the child,” or similar, RUN.
Some SLPs may balk, becoming offended or even defensive as you ask these questions during an initial consultation. These are not the SLPs for your family. An SLP who practices with a pro-neurodiversity model will welcome your questions, and they will partner with you to empower your autistic child or adolescent along with your family. The right SLP will help your loved one meet their therapy goals while always using empathetic and respectful therapy practices.