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. 

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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.