Friday, May 28, 2021

On “Energy Budgeting” and Acknowledging Internal Autistic Realities

Anne Corwin, as a child of about 7 years old with pale skin and dark hair with bangs. She is sitting on a tree branch while leaning against the trunk and looking into the distance.
Photo courtesy the author.
[image: Photo of Anne Corwin, as a child of about 7 years old with pale skin
 and dark hair with bangs. She is sitting on a tree branch while leaning
against the trunk and looking into the distance.]

By Anne Corwin

Too many of us (autistic people) grow up knowing only how to run on momentum, and operate in a depleted state much of the time without even realizing it… until we “crash,” leaving us and everyone around us asking, “what happened?!”

Regardless of whether we are put through formal ABA programs as kids—or even whether or not we’re accurately diagnosed as children—autistic folks often end up learning the polar opposite of “energy budgeting.”

This is partly due to a defect in how our society at large operates, of course—but that’s a whole other gigantic discussion beyond the scope of this article. There are still things everyone can do on a more localized scale to help improve autistic people’s lives, and give us the tools to better navigate reality while maintaining a sense of self-respect and autonomy as we grow up.

What I want to cover here is (a) how adults in an autistic child’s life might better equip them to budget their energy going forward, and (b) some of the things I’ve personally found very helpful as an autistic adult myself in this regard. 

One thing parents, teachers, and others in a position to teach and care for autistic kids can do is provide a wider range of potentially relatable sensory/perceptual experience descriptions. 

Most adults will comment regularly on how things in their environment affect them, e.g., “wow, this is some seriously spicy salsa, it’s burning my tongue!” “ugh, I stepped in a puddle and now my socks are wet, it feels so gross!” “I love how this blanket is really soft but not too hot,” etc. 

All kids pick up on this sort of thing (yes, even when we don’t look like we’re listening!), and it ends up built into our conceptualization of what things may induce certain sensations. 

However neurodivergent folks grow up, by and large, missing out on having many of our own inner state descriptions modeled and mirrored by the majority of those around us. While autistic experiences are of course human experiences, and while certainly we can relate to much of what those around us describe, we are inevitably going to have experiences that fall outside the Venn diagram where “stuff nonautistic people experience” and “stuff people of all neurotypes generally acknowledge experiencing” intersect. 

This lack of neurodivergent models can result in growing up with a limited ability to connect experiences with distress (or even with joy!), and, by extension, a limited ability to plan and account for our sensory/perceptual profile in going about our lives. But this isn’t inherent to autism—rather, it’s inherent to lacking a frame of reference for our experiences, and those around us can do a lot to help alleviate this.

As a youngster, it didn’t occur to me that maybe not everyone could hear a cathode-ray tube TV even with the volume all the way down, or that some people could actually pick one individual voice out of a noisy room, or that not everyone found (most) dresses or ‘pilled’ sweatshirts horribly uncomfortable. Or that other people didn’t experience it as a near-physical wrenching sensation in the brain when someone expected them to switch activities abruptly.

I did sometimes attempt to describe or complain about these things, but nobody really knew what sensory differences were at the time, and trying to determine how to get to a place where my objections to certain things were considered legitimate often felt like throwing darts in a dark room. 

For example, the ‘pilled’ sweatshirt thing—after a fleece garment is laundered enough, it develops a horrible, grainy, scratchy texture that made (and still makes) my skin crawl. As a child, sometimes people would give me secondhand clothing items that had this texture, and I was constantly trying to figure out how to avoid being made to wear them, ultimately coming up with some truly absurd statements, such as “I can’t wear that because someone might have died in it, and the little bumps inside the fabric might be full of dead person skin cells.” (I guess I figured if “this is uncomfortable to the point of being unbearable” wasn’t enough to convince adults my objection was legitimate, maybe invoking something scary—like dead bodies—would be!)

It took me until adulthood to connect the fact that I felt and reacted more intensely to some things, with the fact that I was actually experiencing these things more intensely due to my neurology. And up until I made that connection, all I knew was that in some situations (holiday gatherings, malls, etc.), I “randomly” found myself feeling vaguely ill, and/or like I “didn’t really exist” (which I now recognize as dissociation; I used to privately refer to it as “mall hypnosis” because of how often it happened in shopping malls).

Getting back to my point about how adults can help kids—even just commenting on what experiences are possible for someone to have would likely go a long way toward helping autistic kids connect inner sensations with sensory and perceptual inputs. Even if you don’t experience something yourself, you might occasionally note the possibility of that experience, e.g., if your kid refuses to wear socks, you could comment that, “some people don’t like the feeling of this hard bit—the seam—digging into their toes, let’s find some socks that don’t have that and see whether it feels better?” It could end up that your kid just hates all socks, but it’s worth giving them some tools and context to help figure out what is so distressing.  

Our society tends to discourage “complaining” or coming across as ‘weak’ or ‘sensitive.’ I think it would be a huge improvement if we could work toward normalizing acknowledging distress—and conversely, on acknowledging delight. (And this definitely doesn’t require language, spoken or otherwise; our experiences are real and valid regardless of whether we or anyone else can put words to them. Validation of experience can take many forms, e.g., letting us enjoy what makes us happy (even if you don’t see the appeal), letting us arrange objects in our environment in particular ways, standing up for us if we are bullied, taking our distress seriously, etc.).

Parents of autistic kids and autistic adults ourselves would also do well to make a habit of pre-emptively considering sensory/perceptual/task-switching demands in deciding whether and how to do a thing (or have a child do a thing). 

If I have to go into the lab at work on a given day, I will often make sure and pick the most comfortable work-appropriate clothing possible even if it’s not the coolest-looking thing I own, because I know I’ll be glad of it at 5 PM when I’ve had to move around in whatever I’m wearing all day. I also make sure that my wireless earbuds are charged, and that I have ear plugs packed as a backup before going, basically, anywhere. 

If I need or want to go somewhere, I make sure my transportation back home is of a type I get to control the timing of; sometimes people kindly offer rides, but I’ve learned over time that unless I know for sure the person will leave when I need to leave, it’s better to ask my partner for a ride or use public transportation. And if I’m going to work on a hobby project at home, I have learned to ask myself not just “do I feel like working on this thing now?” but “do I have the energy to work on this AND clean up afterward, at least to a degree that won’t leave an overwhelming mess for my future self?”

Parents can assist their autistic kid in figuring out how to manage this sort of thing in several ways, but one important factor that can shape the entire approach the parent takes (and therefore, how and how well their kid is able to process it) is the acknowledgment of the preceding, interstitial, and aftermath parts of an activity.

For example, whether you’re getting a kid ready for school or taking them on a big family trip to an amusement park (or anything in between), take note of the fact that this entails packing, a car, bus, train, or plane ride, standing in line, etc. One thing non-autistic people are prone to underestimating, in my experience, is the energy cost of just getting places and existing in those places and then getting home again, readjusting to that, and navigating all the transitions in between.

In other words, acknowledge that riding in a car or standing in line can be tiring, boring, etc., and that there might be odd sounds or smells. Acknowledge that having to change classes throughout the day in school (even just to go to lunch, or to art or music classrooms) is not necessarily going to be trivial for your kid, and build this understanding into how you address any “issues” the teachers bring up (or complaints/expressions of distress your kid has surrounding school). I realize this isn’t actionable practical advice per se, but I think when you start with the understanding and knowledge of how certain things can affect autistic kids (and adults, for that matter), you’re more likely to come up with individualized strategies and approaches that will work better for everyone involved.

Finally, I want to make the point that sometimes we may want or need to do something even knowing it’s likely to be exhausting and/or distressing. There is a difference between being forced or coerced into this sort of activity, and choosing it. Being equipped to know how a situation is likely to impact us in the aftermath is always good, regardless. Part of helping an autistic kid (or helping ourselves as autistic adults) figure out energy budgeting necessarily entails acknowledging that we have a right to prioritize, and also not taking it as a harbinger of doom if we occasionally try things that don’t go well.

This is of particular concern for autistics that have higher support needs and/or intellectual disabilities, as folks in these groups frequently have their rights bulldozed to satiate the convenience or the fears of others. It is not, in fact, a kindness (nor is it “realism”) to insist that someone (for instance) learn to tie their shoes before being permitted to do anything fun or interesting to them—or before being given the opportunity to attempt something perceived as far more difficult or scary that they want to do (like attend a protest, or go on a trip, or live in their own apartment). Nor is it okay to set up patronizing rules for adults, e.g., imposing a 10 PM bedtime as a condition of being assisted in getting their own place to live. 

Autistic lives can—and should—be as self-directed, varied, rich, and opportunity-filled as anyone else’s, regardless of the details of our disability or what supports we do or don’t need. All humans deserve to direct our energies in directions that make sense for us, and I hope to see the day when support for autistic people toward this end is considered a matter of basic ethics and decency.

Wednesday, May 26, 2021

Advocating for Autism Acceptance in Tanzania

M. Kelter

CN: Physical abuse

A few months ago, I was contacted by an autism support organization in Tanzania, and asked to follow their upcoming public events on social media. The group is called the Living Together Autistic Foundation (Li-TAFO) and created these events as a way to share autism education and reduce stigma in communities that otherwise have little to no resources available. As these efforts began to unfold, it was clear from their Instagram page that audiences, initially small, were growing into much larger crowds. To better understand the purpose of these events and their potential impact, I communicated via email with Li-TAFO’s creator, Shangwe Isaac Mgaya, who is currently endeavoring to create an autism center in her area that would be the first of its kind.

Photo of a group of Tanzanian adults and children, in front of a LI-TAFO banner.
Photo © Li-TAFO
[image: Photo of a group of Tanzanian adults and children, in front of a LI-TAFO banner.]

M: On your social media, I have been seeing the images and videos you share from these gatherings. Do you mind describing these events and how they have been going so far.

Shangwe: First of all, families with autistic children have challenges with living conditions, most of them are single mothers, even food and shelter is a problem. The first event was held on 22nd November, 2020. I decided to arrange a day for donations of food and clothes to the families, and we had some food and drinks together which made them feel good as this was the first event of its kind to happen in Mwanza-Tanzania, so they felt very good and they felt to be remembered and the families had the experience of knowing that they are not alone. By coming together they felt that they are many families. It is common for fathers to leave their house when autism is diagnosed in a child, women are left alone with all parenting responsibilities. So by meeting one another at this event, they encouraged each other. 

The second event was a training for fathers, caregivers and siblings, which was held on the 14th, 17th and 19th, February 2021. Families suffer due to not understanding autism and believing it to be caused by witchcraft; understanding is very low, so we had this training to help them learn to take care of autistic children without harming them. By doing so, we want to reduce stigma at large and hope this awareness will increase at large as well.

We held Autism Awareness on 23rd April 2021, which had more than 350 people including autistic children, parents and caregivers, doctors, and therapists. We know in our society people relate autism with witchcraft, so we aimed to create awareness of autism as April is a month of awareness. We also distributed some books to the families .And we wanted the government to understand how big this challenge is and we invited the guest of honor to be the prime minister of education in our country, the honorable Joyce Ndalichako. We hope our voice has reached the government. We believe that by inviting the honorable our voices will be heard.

M: Was this the Rock City Mall event? That appeared to have a very large audience. Could you share details about that day and about how the audience reacted to the information you shared? 

S: The event that was done at Rock City Mall had a large audience because of the announcements for it on social media, television and radio. We want families of autistic children to feel that they are not supposed to hide their children any more and that it is better to come together to these events and learn much about autism. We had some students from different schools who came with their parents to learn more about autism and people were very happy to learn more. Parents were curious to learn more. We have many challenges, like not enough access to schools and the problem of stigma. 

We thank the government for standing up together with Li-TAFO to create awareness together. They can help us to solve this, as the number of children increases every day; awareness of autism can increase also and hence we will be reducing stigma at large. We know these kids are rejected by schools. The environment of the schools must be conducive to our children so that they can enjoy them as other kids do.

I shared awareness also at St Augustine University of which I spoke to more than 450 students. I introduced myself and asked if anyone knows about Autism but unfortunately only one student knew about it and they were very interested to know more. We tried to give them leaflets. Finally I tried to insist that they be good advocates and parents to their families, not to run from responsibilities. It was their first time learning about autism, they were very curious to know more, so I arranged a future visit. They want to know more, they were very thankful.

M. Do you mind summarizing Li-TAFO’s goals and how the group got started? Also, as you emphasize the stigma that is placed on autism, I am wondering if you are finding strategies that are effective in changing minds?

S: Li-TAFO is a non governmental organization which is located in Mwanza-Tanzania with the aim to create a world where autistic people and their families can enjoy their full rights and potential. I learned my son has autism when he was 4 years old. I remember I tried to visit several hospitals in Dar-Es-Salaam, which is another city with a lot of specialists. They did not know what the issue was until I met a certain Indian Doctor who diagnosed it as autism. After that I moved to Mwanza-Tanzania and here I tried to take him to different schools. They all rejected him and finally I found another school in another city, which took 14 hours to reach from the place I live. I was allowed to stay at the city of this school for one week and then come back home and stay home for two months and then go back. 

When I was there, I met a lot of parents from that city and from nearby cities. After meeting them, I created a WhatsApp group where we can share different updates and at the same time I was trying to post about Autism in social media like Facebook and Instagram and I came across many parents who share these experiences. Finally, I came to start Li-Tafo, which was Registered on August 2019.

So far the organization has tried to link parents with services like doctors and therapists, creating awareness through radio, television and social media, counselling the parents of Autistic children because at first many find it difficult to accept the challenge. We want people to release children who are kept hidden in their houses due to stigma, so we are training the families, caregivers and siblings, donating some clothes and food to the Autistic families and bringing the families together and having some food together. We are creating zoom meetings with families and therapists and we have created a group in WhatsApp which includes government leaders, specialists and caregivers of Autistic children all over Tanzania. 

As stigma is the biggest issue, we want to be effective and create events in which celebrities and also public figures like government leaders can speak in front of people and by doing so, get more people to be curious about autism and turn away from belief in stigma in large numbers.

M: Please do not feel any pressure to answer this question, but would you like to introduce yourself? What would you like for people to know about you and your family?

My name is Engineer Shangwe Isaac Mgaya a graduate of 2010 at University of Dar-Es-Salaam and a mother of 2 boys and one girl, ages 10, 7 and 4. My first born Daniel is the one who has autism. As a mother, it hurt when at the beginning in-laws blamed him for having a curse, and saying that their clan does not have this type of child. After that we underwent a lot of conflict, there were beatings and the father was provoked away from his son. Finally we were separated in 2016 when I was pregnant with my last child, my daughter. He went to the court for divorce and he told the court that the kids are not of him, though DNA tests found the children belong to him. What a shame to him and finally I am officially a single parent with my three children. I thank God for everything because I Know God has the last say.

Daniel, my first born, he is my story. I can stand before the world as he has made me as I am and I can stand before the Lord to tell about his life as he survived a lot including having boiled water poured on him by house maids, who were told by the neighbors that witchcraft is why he behaves the way he does; irons were placed on him and still by the grace of God he is surviving. He does not always understand when he is in danger, I wish for a speech tablet as communicating with him is difficult. He sometimes runs from home to unknown places and we have to find him.

M: When is Daniel the happiest? Autistic people can experience such intense joy, are there specific things he likes or activities he enjoys the most?

S: Daniel likes swimming and can play with water for more than 6 hours a day. He likes swings, the bicycle and watching TV, though he broke the one we had. He very much likes eating rice, chips and bread, when he gets them he can be very happy.


Follow Li-TAFO on Instagram:
Donate to Li-TAFO directly:

Saturday, May 22, 2021

What Happened to Ethics, in Research About Autistic People?

Scrabble tiles spelling out the word "Research."
Photo © Thomas Haynie | Flickr / Creative Commons 
[image: Scrabble tiles spelling out the word "Research."]

Ann Memmott

I wondered whether a recent major international autism conference had discussed ethics as a topic this year. 

I found one discussion. Well, that's better than none, for a three day conference about our lives

Here’s part of that research team’s paper. It’s called “Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature” and was written in 2021 by Bottema-Beutel, and Crowley for a journal called Frontiers in Psychology.  

“Result:  Of the 180 studies that met inclusion criteria, we found that 84% had at least one author with …a conflict of interest, but that they were disclosed as conflicts of interest in only 2% of studies…Five of the eight journals we examined had policies requiring disclose of conflicts of interest related to employment; clear violations were evidence in four of these five journals.”

So, what’s a “conflict of interest”? This is where teams do research into subject A or B and say e.g. "No, really, I don't earn any money doing subject A or B, so of course I'm not biased when I say that A or B works." But actually they were employed by companies selling A or B, for example. 

It seems that nearly all autism research in that field of Applied Behavior Analysis is being done by people who earn a living out of the thing they are researching. Or are otherwise involved with it in ways that might lead them to overlook facts, or make results look better than they really were.

....and they generally don't bother telling anyone this when they write up the research.

People may think the research is done by completely independent people, but it’s not. 

This is serious stuff, and seems to me to be deeply unethical on this scale.

Example: Suppose you are employed by Company A to do a thing to autistic children.  It's in your contract that you must do it. You're paid to do it.

And then you're researching it.

If you say, "Oh no, it doesn't work!"—there goes your job.

So...would you say it didn't work?

It gets worse. Because now you've said that the thing works, when it doesn’t work.

The next set of researchers write their own paper, and they say, "Well, the first Research Team say this works fine. That must be right. So we'll design new stuff that also uses that technique."

Now there's two papers saying it works.

Along comes a third team who say 'Great, two previous teams say this worked. So we'll design it into a third thing."

Autistic people then say, "But it doesn't work," and get told we're talking nonsense. After all, three teams say it works…

Those who follow some of social media know how often I've tracked an alleged 'fact' about autism back to someone who simply invented the 'fact,' and then it got put into research paper after research paper. But, the ‘fact’ was never actually true. Sometimes it is just an idea that someone had, for example, without doing any proper research.

We are awash with nonsense. It escalates and escalates. Not just in the field of Applied Behavior Analysis, either. 

One person's vague rubbish or error, decades ago, gets boosted down generations of researchers, until some autistic children are being subjected to drugs, surgery, techniques to terrify them, and goodness only knows what else, because of the alleged 'facts.' Some of the research I see is truly shocking.

Allegedly autistic people are broken, have no social communication skills, will lead dreadful lives, etc etc. So much good research has shown this to be largely untrue. Autistic people generally have different social skills, not broken ones, for example. (Plenty more about that in some of the blogs I write.) Yet we see paper after paper saying our social skills are broken, and the research teams don’t even bother to mention all the new research showing it’s not true. The Ethics Board at the University don’t notice the errors and missing information, it seems. So Universities enable team after team of researchers to enforce normalisation of our social skills, even though we have research showing this is so often disastrous.   

Ethics matters. Ethics is supposed to respect differences, not erase them. Ethics is supposed to consider whether harms are being done during research. Yet few autism research teams check to see if any harm is being done, when writing results in their research papers. The team of Bottema-Beutel, Crowley, Sandbank and Woynaroski looked at “Adverse event reporting in intervention research for young autistic children” in 2020, and found that out of 150 examples, only 11 considered whether the children were harmed during any of the research. How can this be right, when this is such a vulnerable population, and when these are children? Do people think we are unfeeling lumps of wood?

We desperately need Universities to take ethics seriously, for autism. To consider autistic Human Rights, for example those in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which says that autistic children and young people should have a say in what is done to them, and should be listened to. The CRPD says that autistic children and young people have the right to an autistic identity. Such autistic identities, cultures and communication styles are so often erased by treatment programs such as Applied Behavior Analysis.  

We need Universities to put autistic specialists on their Ethics boards, so that when research is done on autistic people, there is lived experience and expertise at that table, challenging some of the incorrect ideas.

We need the opinions of autistic people to be taken seriously. So many people ask the parents and carers rather than the autistic young persons themselves. How can that be ethical? Even when autistic people are asked, so often their opinions are ignored or considered less important than any other ‘stakeholder.’  In fact, often we are the only people in the room with no say in how we are treated.

We need to stop the bizarre idea that autistic people are either too autistic to be able to give views that matter, or not autistic enough to have views that matter. How on earth did that piece of thinking ever happen? The views of all autistic people matter. Enable communication, and listen.

We need research that is open, transparent, person-centred, informed, collaborative, Human Rights based, and unbiased.

Every autistic person deserves ethical research that improves our lives, and honours our own aims for our futures.

Thank you for reading. 

Thursday, May 13, 2021

The First Tendrils of Communication

Photo © Shannon Des Roches Rosa
[image: Orange and purple flowers among green leaves.]
Cal Montgomery

For Mel Baggs and Phil Smith, who knew, and know, communion with the wild places better than I can imagine.

Do you remember how you learned to communicate? If you communicate pretty typically, odds are it wasn’t perfect, but it included something like: you reached out socially, and people reached back.

You looked at them; they gazed adoringly back at you.

You smiled; they smiled back and waved. “Hi, Baby! Hi! Oh, what a beautiful face!”

You laughed; they reveled in your chortles and giggles and were silly in the hope that you would laugh again.

You cried; they held you and comforted you and tried to figure out what was making you miserable.

You called out at night; they pulled themselves out of exhausted slumber, scooped you up, and blearily cuddled and fed you.

You made a sound or a gesture, an approximation of standard meaning—or they convinced themselves of that, anyway—they pounced on that and talked back to you. “That’s right! Ma-ma! You know who your mama is! Can you say it again?”

They celebrated your efforts to engage, amplified them, reflected them, and worked to understand them.

The first tendrils of what would eventually grow to be a robust, redundant, and resilient communication system peeked out of you, questing for the sun of human connection and they, who reveled in what developed, with consummate faith in the richness of the soil those tendrils came from, watered and fertilized them; and between you, the communication system bloomed and blossomed into a strong and supple living thing.

You were human: the development of an adaptive and functional communication system was a drive. Once you knew how to communicate with people close by, those who knew you best, you gradually became better and better at communicating with others.

Through communication, you developed—to a greater or lesser degree—the ability to connect with others. And because you were human that, too, was a drive. It probably has been thwarted to at least some extent, just as there are people among whom you feel unheard, or who make you feel unable to understand. But also, you know you can.

Or maybe it wasn’t so easy or so joyous. Maybe the soil was too thin, or the rain too sparse, or the sunlight too filtered. Maybe those who should have nurtured you did not, for reasons within or beyond their control. Maybe the communication system grew slowly. Maybe it bore the signs of hard growth. But again, if you communicate pretty typically, then probably, between whatever you did have and human instinct, those hardy tendrils, doggedly found a way. Communication, connection, after all, is a human drive, and you were, you are, human.

And sure, there are times when you feel lonely, and times when you struggle to express what you want to say, when the living thing between you and others seems battered and bedraggled, beset by drought, but the fundamental ability to engage in human give-and-take is there, waiting, like a cactus, for the rare and precious rain.

But now imagine if your reaching-out is misunderstood or unnoticed, if it is ignored or even discouraged. Imagine if, instead of being showered, or at least drizzled, with nutrients, it is sprayed with pesticide, or even torn out at the roots. Imagine if someone else, like a landscaper who has been educated by those who cultivate formal gardens, decides how you should communicate, and then enforces that decision, stamping out whatever errant shoots creep out of you, and which she sees as weeds. Imagine if your communication system, instead of growing in fertile ground, is constructed in a lab and forcibly buried in you in place of what was already growing but fervently opposed. Imagine if your efforts to communicate and connect—because it is all one thing—elicit not excited reciprocity but measurement, evaluation, strict weeding, and control.

I’m not saying text-based AAC is better than grid-based. I’m not saying any kind of chunk of a communication system is better than any other kind of chunk. I’m not saying to push for that instead of this. I’m saying that a communication system must be one that takes root in the ground where it will live, and that allows for the fullest expression possible of what the ground already contains.

As much as I completely understand the terror a parent feels when they look into the future and cannot imagine what communication is going to look like, as much as I completely understand the hope that a professional seems to offer, who has with a system for forcing the approximation of that which the parent has come to expect natural growth to look like, it’s the wrong choice.

A fear-and-control-based approach to human connection is wrong. You can’t make connection that way. It has to be organic. And yes, there is a time to prune, a time to tell your child not to comment on other people’s bodies, a time to coach your teen in the art of the handshake rather than the hug, a time to mark the trails that those who are welcomed in will follow, but the more tender the shoots of the communication system, the riskier that pruning is.

I am saying when you plan in advance how someone else will communicate, you plan what they will communicate, and then it ceases to be communication. When you enforce a particular way of communication and relentlessly prune anything that does not meet your standards, then what should have become, perhaps, a powerful redwood is trained into a bonsai instead; and a bonsai, however artistically presented, cannot do the work of a tree that has grown as its own nature commanded it. What should have been, perhaps, sorrel, harassed by the controlling landscaper because it is not the violets she wishes it to be, will have leaves so damaged that they cannot absorb the sunshine of connection. And when the landscaper beams at the parents and proclaims, “Nothing worthwhile would have grown here without my efforts, so celebrate this withered stem I have coaxed from earth that was once overrun by weeds!” it is cause for grief, not gratitude.

You may have wanted tulips, and by all means, bury a bulb or two and see what comes up in the Spring, but if the absence of tulips is all that you can think about, you may miss the sweetness of honeysuckle.


Republished with permission.

Wednesday, May 12, 2021

Why Elon Musk Being Autistic Isn't That Great For Autistic People

Elon Musk oveseeing the construction of Gigafactory
"Elon Musk oveseeing the construction of Gigafactory" 
by jurvetson
 is licensed under CC BY 2.0

[image: Elon Musk, wearing mirrored sunglasses and a reflective chartreuse safety vest.]

Sarah Kapit

Elon Musk announced to the world that he’s autistic on Saturday Night Live. Some people have claimed that this represents a noticeable step forward for autistic people in public life. But I’m not celebrating.

My interest here isn’t to rehash all of the reasons why Musk is an obnoxious public figure who has done damaging things to his employees and the world at large—although I hold this opinion. Other people have already written about the litany of his misdeeds. Instead, I want to consider Musk’s shortcomings in the specific context of autism and disability politics.

First, Musk did not describe himself as an autistic person. He said he had “Asperger’s,” which is a term that is rooted in ableism. In the U.S., “Asperger’s” is no longer a valid diagnosis. Although I understand that some countries still use the diagnosis, the problems with the Asperger’s label are very real and worth noting. Even before revelations about Hans Asperger’s probable Nazi connections came to light, most people in the autistic community had abandoned the term. Oftentimes, the Asperger’s label is used to suggest that some autistic people are superior to others. That’s not solidarity, and I want no part of it. So if Musk wants to be warmly welcomed into the autistic community, he needs to address this issue.

The next problem is that Musk’s announcement itself erased other autistic people. He claimed to be the first openly autistic person to host Saturday Night Live, but this is not the case. Founding cast member Dan Akroyd is openly autistic, and he hosted the show in 2003. Musk isn’t the first autistic person to host SNL—just the first to make this kind of self-aggrandizing announcement.

That isn’t the biggest problem with Musk, however. His previous contributions to autism-related issues do not exactly embody the spirit of disability advocacy. Musk, who is not a neuroscientist, claimed in 2019 that his company Neuralink will soon be able to cure neurological disabilities—including autism. Neuralink is developing an “AI chip” that will be implanted in the brain to stimulate brain activity.

So far, this claim is the stuff of science fiction. I know of no serious autism researchers who are working in this field of study. But, fantastical science aside, Musk’s claims reveal a deeper lack of understanding about the issues facing autistic people.

Many autistic people say we would reject a cure even if one were offered to us, and that should be respected. Yet the issue of a cure is, in many ways, besides the point. The fact is, we’re a very long way from being able to change people’s entire neurological make-ups. Even with AI chips and whatever other doodads Musk’s tech friends are promoting this week.

As a society, we spend hundreds of millions of dollars trying to cure autism and identify genes associated with autism. Neuralink is valued at $500 million. At the same time, many autistic people struggle to obtain services in community-based settings. As a group, we are horrendously unemployed and underemployed. We are more likely to live in poverty, to face sexual assault, and to live in institutions. Is Musk going to do anything to address these problems, or is he just interested in peddling his products?

Musk is, undeniably, an incredibly privileged autistic person. He was born in apartheid South Africa, to white parents who owned an emerald mine. As a rich white man who fits the “techie” stereotype, autistic people like Musk are among the most privileged autistic people. This in and of itself would not be as much of a problem if Musk used his fame and position to extend solidarity to other autistic people. Alas, that is not the case.

Highly visible autistic people carry certain responsibilities. Fairly or not, many non-autistic people often start comparing the rest of us to them. I have been informed more than once about the existence of Temple Grandin, as though her success is supposed to make me feel better. Or something.

I wonder if I and other autistic people will now told that we can be like Elon Musk. To which I say: no thanks!

My message to Elon is this: If you want to be enthusiastically welcomed into the autistic community, act like a member of our community. Stop using the “Asperger’s” language. Familiarize yourself with the issues facing less privileged members of our community, and pass the mic over to them. And, for goodness’ sake, stop promoting sci-fi solutions to our problems.

If you can do that, maybe we can talk again. But until then, I’m not interested in extending the welcome mat.

Thursday, May 6, 2021

It's Never Just a Sandwich

An Asian child eating a sandwich.
Photo © Angelina Creations | Flickr / Creative Commons
[image: An Asian child eating a sandwich.]

Emma Dalmayne

As an autistic adult and a mother of autistic children  I am often asked about meltdowns and how they feel.

I can tell you how it feels to have a meltdown from my perspective, and how to help your child.

When you have a meltdown it's as if the world is ending. Everything is too much, and you feel like an overwhelming darkness has engulfed your very being. Irrepressible anger that may seem completely irrational to an outsider can be inwardly devastating us internally.

When your child suddenly explodes because their sandwich has been cut at the wrong angle, or another child has won a game—or even because they have been jostled in a queue, that’s the catalyst. It's the last straw on the camel’s back. It's not the sandwich necessarily; it's a build up of things that may have happened during the day, or even previous days. That sandwich was the last thing they could control, and once that erred, their world crumpled. The last bit of control over their universe disappeared. 

Cause and effect anger will be involved in an angry meltdown, smashing ripping and throwing, possible self injurious behaviours to show outwardly the pain internally. 

How do I know this? Because as an autistic person, it can take me missing throwing something into the trash bin, or my PIN failing to go into my online banking properly, and I will puddle: Literally explode/implode, and sob like my heart will break. It will be because of a build up of things, and utter frustration.

There's also the depressive meltdown, the one that makes you feel like you’re nothing, you’re worthless, and the world would be a better place without you.

There's no rationalising with an autistic person in either of these meltdowns.

If you tell us it's ok, it's not. You are trivialising our distress, and that will make us worse.

Telling us to “Stop” or “Get a grip” will also trigger us, as we would if we could: No one wants to feel this way!

So: If your child is self injuring, maybe guide the hands down to a firm surface to hit.

If they are biting, grab a chewy or clean washcloth for them to fasten on to, they may need to feel the pressure of the bite to ground them. Or wind a cloth around their hand so they can bite their hand without breaking the skin. If they head butt, get crash mats and a safety helmet.

A weighted blanket works well for some autistic people to help regulate, as does a weighted body warmer. If these work for your child, offer them if you see a meltdown is on its way.

Rumbling can be another sure sign of an incoming meltdown, as is pacing up and down or verbalising aggressively. When you see these signs, and if possible, redirect your child to a safe quiet area.

If you are out when a meltdown occurs, the child may run. This is because we literally need to get away to somewhere quiet, and our sense of danger may fly out the window. If you need to get your child somewhere safe, then do so. Print off a few cards detailing your relationship to your child and the fact they have autism and are having difficulties, as the sight of an adult carrying a screaming struggling child can be mistaken for an abduction.

If your child has violent reactions before school or after, it's more likely anxiety and frustration at not being able to communicate what's happening to them. Sensory overload is also a massive trigger. The school should be making accommodations for your child, i.e., sensory breaks and allowing the use of ear defenders/noise-canceling headphones, tinted lenses, and/or a chewy if needed. 

Also check to ensure your child is not being bullied, as they may not even realise that you don't know about the bullying, and may feel resentful towards you for taking them to a place where they get bullied.

Lastly only hold your child back if they are a danger to themselves or others, as a touch can feel like an electric shock, and may cause them to strike out due to their fight or flight mechanism.

Too often I see posts on Facebook and articles by parents moaning how terrible it is to cope with an autistic child’s meltdown and how hard it is for them, when in reality they have no idea how hard a meltdown is for their autistic child.

So, please: An autistic meltdown is about your child, and how bad they are feeling.

Please don't punish or berate your autistic child for how they have reacted during a meltdown, as their actions are not willful, or even conscious. Maybe they even blanked out completely, as during a full blown meltdown this can happen—leaving us bewildered at the devastation around us.

A cool drink, a dark room, and clear short sentences can all help your child feel better.

Remember, there's always more to a meltdown than a sandwich.