I had a post in the works about why autism acceptance is so important, but sometimes it takes me a while to get posts out.
In the meantime, this is something more people need to see.
This is a photo currently going viral on Facebook, a written exchange between a 7-year-old autistic girl named Cadence and her mother. (Click the link or the photo for a bigger size.)
{Transcription of image text... Cadence: Does being autism make me bad? Mother: What makes you wonder if being autism makes you bad? Cadence: Grownups always say it's hard being mum or dad if your kid is autism and it said on the TV if your autism you hurt people. And kids who are autism have to be put in a gale [jail] to keep others safe or tied up. Mother: Do you think I believe these things are true, or that I would say them? Cadence: NO! Mother: What do you believe? Cadence: I don't like hurting people. I don't like being scard. I would be scard in a gail [jail] room. I was born autism but that doesn't mean I was born bad. Are you crying? Mother: Yes. I have happy tears that you know what is true; and I have sad tears because there are lots of people who don't know what is true.}
I could have spent hours and thousands of words trying to explain why acceptance is so important and awareness is actively hurting autistic people and the community.
Nothing I could write would make the point as well as this does.
If you're at all involved with the autism community, you probably know by now that Sesame Street launched their autism initiative earlier this week (and hopefully you aren't too tired of hearing about it to read one more post). While most of the media focus is on their new autistic muppet, Julia, they put up some other resources as well. After taking a few days to read others' reactions, I wanted to chime in with a more in-depth review.
After watching the videos and reading through the storybook, I believe this initiative has three main goals, with a heavy focus on the first:
Help neurotypical children understand what autism is, and how to include autistic kids.
Give autistic children a character (Julia) to relate to as a representation of themselves.
Offer resources for parents of autistic kids.
Overall, I think this focus in and of itself isn't bad. It would have been nice to see more resources specifically geared to autistic people, but Sesame Street has always been about teaching kids to respect differences so it can nip bullying and discrimination in the bud. That has its place, too.
As for the videos and resources themselves...here's my review of what was good, and what could have been improved. (You can click on the titles to access the original material.)
While there isn't much information here, it's a good introduction for kids who might not know anything about how autistic people look and act. The inclusion of visibly disabled children is nice, and there's lots of stimming shown, as well as some alternative communication methods - all positively. By itself, it's not all that helpful, but it works great when combined with other resources.
I like that this cartoon story was made by autistic adults, at a vocational school called Exceptional Minds. It's one that has an autistic child talking about himself, rather than having other people describe him.
This video describes the point of view of one autistic child without being an overload of information. It talks about being different - both due to autism traits and just because everyone is unique - but doesn't focus on the "can'ts." In that respect, it's very good.
Most of this video is really well done. Thomas has some challenges, and we're made aware of them, but he's not presented as being worse off or suffering. Instead, there's a lot of positive focus on using a tablet to communicate, having a service dog to keep him safe, and noticing things other people overlook.
There's a scene at the end of this video that isn't so good, which I'd be inclined to skip if I were showing it to a child. It involves Thomas meeting Abby the muppet, and he's clearly excited, bouncing up and down and reaching out to touch her hair. Throughout this bit, his mother is grabbing his hands to get him to stop, and his father keeps yanking him back by a leash connected to his waist. They don't appear to even be attempting to give him verbal reminders (to ask permission to touch, for example), but jump straight to restraints. I'm not sure if a child viewer would notice this - not that it excuses the behavior if they don't - but to an adult the actions are clear and rather upsetting. If not for this scene, the video would have been great.
I really want to like this video. This is another one that shows a nonverbal child, Yesenia, and the way she communicates - in her case, sign language. It portrays her stimming positively, and shows how the whole family loves and includes one another.
But - and this is a big but - there's a scene in the beginning of this video where Yesenia's sisters are helping to restrain her so their parents can brush her teeth and hair. It shows Yesenia struggling and trying to get away as her sisters grab her and hold her still; meanwhile, one of them states in a voiceover, "I feel happy I can help her." So if a disabled person is clearly upset and not doing what you want, it's a good idea to force them and call it "helping"? Not the kind of message we should be sending to kids. (The hair-brushing in particular could be much more bearable for her if it were simply cut short.) A shame, the rest of it was really promising.
Yuck. Just...yuck. This is the kind of video that shouldn't have been put up. It basically features Yesenia's father complaining about how stressful having an autistic child is. At one point he starts crying when describing how Yesenia wouldn't blow out her birthday candle until the year she turned six. The clip playing alongside this shows her clearly overwhelmed, with her fingers in her ears to try and calm herself, until she blows out the candle unhappily. This is what he deems worth celebrating? We can only hope she doesn't find this video herself one day...
I have to say, this is one of the best videos they made. It explains some of Nasaiah's autistic traits and the reasons behind them (that part is even more important) while still showing how his day isn't all that different from a neurotypical child's. Not much to say here, but in a good way.
Another video about Nasaiah, this time from his mother's perspective. While it isn't the most positive video out there, and mainly focuses on how raising an autistic child can be hard, it's miles ahead of the one from Yesenia's father. Nasaiah's mother talks about how she and her husband support each other, and some of the strategies they use when things get hard - and manage to be pretty respectful of their son. Not the best video, but definitely not the worst either.
This is similar to "A Sibling Story" in that most of the video is fantastic. It's about two mothers whose children (one of whom is autistic) have grown up together, and there are some really good messages in here. My only complaint is that yet again, a clip of a parent physically restraining their autistic child is shown. It's difficult to tell whether this situation warranted it, but either way, I question why Sesame Street felt the need to include this in multiple videos.
Still, I rate this among the best they did. The mother speaks very respectfully about her son, and about his diagnosis. It's clear she really cares about him. And as far as the restraint goes, I'm not sure it would bother me if I hadn't already seen it in several other video. It wasn't handled nearly as badly here.
Not a terrible video, but definitely not a good one. It's full of mixed messages and the complaints definitely overshadow the positives. I don't like this one.
(I was initially expecting this to be another video aimed at kids due to the inclusion of Grover, but it looks like it's geared more towards parents. Not sure why the muppet-with-kids and parents-discussing clips are mixed this way, it's a bit confusing to me.)
While maybe not as informational as some of the others, this video is interesting because the parents are discussing autistic twin boys whose symptoms both present differently. One of the boys is nonverbal and uses a tablet to communicate, and the parents discuss how he got started communicating this way. No big issues here.
These are like social stories, made for the purpose of helping autistic kids know what to expect. I'm not putting too much weight on the importance of these, because it's fairly easy to find social stories - or programs that let you make your own - through a quick Google search. Not much to say about these, really. I think they could be good reminders for autistic and neurotypical children both.
Last but not least, this is where Julia the muppet comes in. The story centers around a playdate between Elmo, Julia, and Abby, during which Abby learns a little about Julia's autism and how to be her friend. It's definitely aimed at neurotypical children, and with the intention of nipping bullying in the bud.
I enjoy the storybook for a lot of reasons. I like that when it starts off, Elmo and Julia are already friends, rather than showing her as an outcast who doesn't know anyone at first. It's respectful of Julia's interests, her stimming, her sensitivity to noise, and the way she sometimes needs help processing.
{Image description: A page from the storybook explains that Julia flaps her hands when she's excited.}
It's especially noteworthy that Sesame Street chose a girl as their autistic muppet, since it's not particularly easy to find representations of autistic females unless you're specifically looking for them. That was the reason behind their decision, in fact - "to make it clear that girls can be on the spectrum, too." I can't praise this decision highly enough. Not only will it show neurotypical kids that girls can be autistic, too, but it will give those girls much-needed representation (which is especially important for children, to see themselves in a character).
Some people have criticized that Julia only exists online for the moment and hasn't been made part of the show. I'll be quite disappointed if it stays that way, but somehow I don't think it will. Julia, and this initiative as a whole, is helping to fill a gap that desperately needs it.
As far as I'm concerned, the good outweighs the bad. Kudos to you, Sesame Street, for working to provide resources and representation. I'm putting my faith in the idea that this initiative will keep moving forward and improving.
A few paragraphs in I was already cringing. This mother starts off admitting she was told that the term "autism mom" is really offensive (and it is - I'll get to the reasons behind that in a minute). She acknowledged the problems...and then went on to argue that she should be able to use the term anyway because of what she thinks it means.
That's issue one. If you're trying to show support for a person or a group of people, and that group comes to you saying, "Please don't do that, it's harmful to us because [insert reasons here]"...the appropriate response is to apologize and not do it again. By persisting in calling herself an "autism mom," she's hurting the very group she's trying to support.
Issue two: She tries to compare it with calling oneself a "soccer mom." The problem here is that "soccer mom" refers to a mother whose children play soccer, and she tries to support their passion. It's not in any way equivalent to saying that "autism mom" means, as this mother argues, that she is "not afraid of the word 'autism'" and tries to support her autistic child.
Soccer is not a disability, and it's not lifelong. If your ten-year-old plays soccer, within a few years one of two things is going to happen. Either he will be able to pursue soccer without needing as much support from you (in the form of driving him to games, making sure he has time to practice, and so on), or he will simply get tired of soccer and move on to something else. Regardless of which it is, you will not be a "soccer mom" forever. Parents of autistic children aren't in that position.
The third issueis this little quote: "I never want anyone to assume that I somehow think my son's autism is about me." But, see, that's exactly what calling yourself an "autism mom" implies.
The community dislikes the term "autism mom" for two reasons. The first is that, plain and simple, you are not parenting a developmental disorder. You're parenting an autistic child who has complex needs, desires, thoughts, and feelings.
(What I especially don't understand is when you insist on referring to your child - as this author does - as a "person with autism," but then turn around and call yourself an "autism mom." Isn't that a bit contradictory?)
That leads into the second reason the community doesn't like this term. By calling yourself an "autism mom," you're claiming a term that isn't yours.
I have autism. I'm always going to be autistic. That means that when I walk into a room, my autism comes with me. I can't ask a babysitter or respite program to watch it for a weekend, a night, or even a few hours. When it was time for school, I didn't get to send my autism by itself and be away from it for 6-8 hours, five days a week, thirteen years in a row. And my autism will never leave for college, move out, or be placed in a group home one day. I will have it until the day I die.
I'm not denying this mother loves and supports her child. I don't know her. But I do know that there was a time in her life when autism didn't apply to her.
She argues that "neurotypical parents of children with autism need to be able to identify other parents in the same circumstances." I quite agree. You're absolutely, one hundred percent welcome to identify yourselves as just that - parents of autistic children.
But it's just not possible to respect your autistic children without respecting autistic adults. Autistic adults approached this mother to tell her that the term "autism mom" is disrespectful and hurts all of us - and she spit in their faces. She wrote this article to tell those autistic adults, in essence, that her opinion was more important than theirs.
So, to the author of this article, let me ask you something. Is that the way you want neurotypical people to treat your son when he's ready to advocate for himself? Is that the kind of response you hope he'll get?
"The way [any two autistic people] feel is different,
so they play differently.
Their world perspective is different,
so their system is different."
~With The Light, volume 1
Sometimes your regular methods of stimming just aren't enough, and you need more ideas as to how to regulate sensory input. This is often referred to as a "sensory diet," and can be beneficial for sensory seekers (people who don't get enough or the right kind of input from daily life) as well as sensory avoiders (people who get too much of that input). Here's a list of 50 ideas for anyone who isn't sure where to start.
Disclaimer: Don't expect any and all of these to work for any given autistic person. What works wonderfully for one person might be torturous for another. Finding the most helpful sensory experiences usually requires a bit of trial and error.
Jump rope.
Bounce on a trampoline...
...or exercise ball.
Hit a punching bag.
Set up appropriate lighting and make shadow puppets.
Play flashlight tag with a group.
Use a straw to blow bubbles in milk or another drink.
Build a snug fort out of blankets or couch cushions.
Chew gum.
Eat sticky or hard to chew foods, like peanut butter or caramel.
Lie under a weighted blanket. (If you don't have one, try layering blankets on top of each other.)
Play with kinetic sand, Play-Doh, or "slime" made by mixing cornstarch and water.
Go swimming.
Take a bath. Bubble baths provide an extra sensory experience.
Climb a rope ladder.
Experiment with yoga poses that put pressure on different areas of the body. (Here's a list of ideas to get you started.)
Be massaged.
Carry a stack of books or other heavy items. (Make sure not to make it heavy enough that it could injure you. The recommended limit is 10% of your body weight.)
Rock in a rocking chair.
Play in a ball pit.
Use a foam roller to exercise...
...or have another person roll it over you. If you don't have someone able or willing to do this, see if you can get access to a squeeze machine (sometimes called a hug machine).
Dance. Switch up the music if it isn't meeting the level of stimulation you need.
Ride a bicycle...
...or skateboard.
Do jumping jacks or donkey kicks.
Play tug-of-war.
Sing.
Turn on a lava lamp and watch. Being in a dark room heightens the effect.
Play in a sink or large bowl of soapy water.
Shake a snow globe or glitter jar. (If you don't have one, you can find instructions on how to make a glitter jar here.)
Bury your hands in a container of uncooked rice, dried beans, or flour.
Spin on an office chair, or use a toy that provides the same movement (like Sit 'n' Spin).
Do wall push-ups.
Apply or spray strong fragrances, like essential oils.
Give or receive a tight hug.
Turn somersaults...
...or cartwheels.
Ride or be pulled along on a scooter board.
Push someone in a wagon.
Lift weights.
Do a handstand.
Try wheelbarrow walking.
Drink soda or carbonated water. Anything that fizzes in your mouth will do.
Bounce a ball against the wall.
This isn't a complete list by any means - there are a huge number of ways to regulate sensory processing. If it feels right to you and isn't harmful, that's all that matters.
"Everyone here seems so busy, so rushed.
I wonder if they are happy."
~Liara T'Soni, Mass Effect
I remember sitting at the computer around this time last year, trying a Google search for phrases like "back to school with autism." The results that followed were what I've become used to - advice for parents of very young kids with autism - but that doesn't make it any less frustrating. The results for that same search today are almost exactly the same. While it's good that there are so many resources for parents of autistic kindergarteners, that's not very helpful to someone returning to (or starting) middle or high school.
So what can autistic preteens and teenagers do to get ready to go back to school? Change is rough, but we can take steps to make it a little easier. Here's what I suggest.
If you're starting a new school, get familiar with the route you'll be taking to and from school.
This might be difficult if you ride the bus, but regardless of how you're getting to school, it's a good idea to do this if you can. That way, you'll know how long it takes to get to school, and have at least some idea of how to get there (even if someone else is driving you, or you rely on GPS). If you won't be going directly home after school, it's probably a good idea to also get familiar with the additional stop on your route.
Unless you go to a very small school, there will likely be a few entrances and exits. If you're meeting, or being picked up by, someone else, you may want to agree on the most convenient spot to wait. Check which entrances/exits are closest to your first and last class of the day, and you should be fine.
Organize your supplies before the first day.
In middle and high school, teachers usually don't hand out a supply list until after school starts, but most of what you need will be the same for every class: pencils, pens, highlighters, notebooks, folders, and so on. You may have to pick up a few extra things once supply lists are distributed, but for the most part it's easy to take care of beforehand. Some people find it helpful to color-coordinate their supplies, so that their supplies for science class are blue while history class is green, etc.
Bring stim toys or any other helpful tools, too.
Even if you don't have stim toys (or the ones you have aren't portable), it might help to bring along something else that helps you. Some people use stress balls or a specific scent to help them relax. This is really up to you. Just make sure to clear it with your teachers before you use it in class.
If you're going to use a locker, practice with your lock at home.
The shorter your passing periods are, the more important this is. You want to be able to open a combination lock reasonably quickly. Some schools will let you take your lock home, but if you can't, you could easily buy a different one at the store for a few dollars to practice with. Keep your combination written down in a safe spot, and don't share it.
Schools almost never make it mandatory for students to use a locker, so if you really don't want to, it's unlikely to be an issue. If you're expected to change clothes for PE, however, knowing how to use a combination lock is a necessary skill.
Get enough sleep.
Being well-rested improves a lot of things. Depending on your age, you probably need anywhere from eight to eleven hours of sleep a night.
Have a schedule ready and easily accessible.
In addition to the schedule your school will give you with subjects and room numbers listed on it, you might also want to write out the school's bell schedule. Make sure to keep track of how long your passing periods are.
If you're starting a new school, you may want to see if you can download a map from the school's website. Most larger schools offer this. Then you can print it out and easily mark your classrooms (and locker) with highlighter or stickers.
Bring lunch (and possibly snacks) from home.
This is doubly important if you have any kind of dietary restriction, but even if you don't, it's still a good idea. Lines to buy a cafeteria lunch are likely to be ridiculously long on the first day, and the food is unfamiliar. It's easier just to bring lunch. At the very least, it will make one thing about the day more predictable.
Be ready to work out issues with seating.
The first week of school, there are generally three ways teachers decide on seating: alphabetical order, at random, or by letting the students choose. In the case of the first two, many teachers are fine with changing your seat if you ask - whether it's so you can see or hear the lesson more clearly, avoid distractions (if you have a window seat, for example), or move away from a problematic arrangement. In the case of the third, choosing seats is typically done on a first-come, first-serve basis. It doesn't hurt to be early to class.
As in earlier grades, you can expect seats to change around over the first week or so of school, mainly to separate groups who are talking too much or distracting each other.
Realize that the first day - or even the first week - might not go perfectly. And that's okay.
School can be difficult. Changes can be even more difficult. But keep in mind that a lot of problems work themselves out within a few days or weeks, even though they're really hard at first - and if there are some that don't, you can bring it to the attention of someone at the school for help.
Teresa, who writes over at Embracing the Spectrum, has recently begun posting a series of interviews with autistic people as part of her blog. This week, she's posted mine, in which I discuss sensory overload, reducing frustration, functioning labels, and the ever-present question of a "cure." Check it out!
Stimming is one of the most widely-known signs of autism, even though a lot of people don't know the term for it. It's short for "self-stimulation," which appears in many different forms. Even though some stims look just like fidgeting, stimming is very important because it helps us regulate our emotions, and therefore have fewer meltdowns. We might stim due to being very happy, upset, bored, tired, or stressed.
(For non-autistics seeking insight: Apart from helping us manage emotions, stims just feel good to do. It's harder to try not to stim than you might think - the closest feeling I've found is trying not to scratch an itch. While it isn't too difficult at first, it slowly gets more and more pressing until you're going out of your mind trying not to do it.)
Stims can generally be separated into two categories: those which are harmless, and those which are not. This post covers the first type. Harmless stims are generally defined as those which don't cause physical injury to anyone or damage property. They're also sometimes clarified to exclude those which aren't socially acceptable (spitting, for example).
If I had to pick one, I'd say the most commonly shown stim in media involving portrayals of autistics is probably flapping one's hands. This is definitely something a lot of autistic people do, but it's far from the only type of stimming. Other examples of harmless stims include (though this is by no means an exhaustive list):
Rocking, either while sitting or standing
Jumping up and down or bouncing in place
Standing on tiptoe
Pacing
Wiggling fingers
Spinning in place
Drumming on a table or other surface
Chewing on objects
Repeating the same word or sound (this is different from echolalia in that someone who is stimming isn't necessarily attempting to communicate)
Sucking on fingers or objects
Singing
Jiggling feet
Bowing
It's completely normal to stim in multiple ways. Some people have a stim for each emotion, and others just move freely between theirs.
Additionally, it's not uncommon for autistic people to pick up other stims we see. Watching someone else stim and beginning to stim that way in the future doesn't mean your diagnosis is wrong or that you're "faking" being autistic. Neurotypical people can be around stimming all day long and won't begin to do it themselves unless they're deliberately doing it to mock the person.
Unfortunately, most stims aren't socially acceptable in the eyes of allistics unless it looks like fidgeting (e.g., jiggling feet, pacing, repeatedly clicking a pen). As long as your stims aren't hurting anyone or anything, you don't have to make yourself stop doing it. People who don't understand stimming are often just uneducated on what it is and why it happens. You do not have to cater to them. If they don't want to look at it, they can look somewhere else. It may help to have a few good comebacks ready if you anticipate rude remarks about your stims.
However, if your stimming is loud or otherwise truly disruptive to other people, it might be a good idea to look for an alternative that can be done in public. Experiment a bit and see if you can find a quieter stim that works for you when you're out and about, and hopefully you're still able to use your preferred one in the privacy of your own home. (I'll address more on redirecting stims in my next post on this subject.)
One option that may be helpful is to look for stim toys, which are sometimes marketed as "fidget toys." They're small and usually inexpensive tools you can play with as a stim, as the name suggests. A quick Google search will reveal several places to buy them. I'm particularly fond of Stimtastic, but other autistics I know have recommended StimStix and Chewy Tubes (the latter is marketed for children, but makes a good stim toy if you're inclined to biting or chewing, as the name suggests).
When they're not hurting anyone or anything, stims are an incredibly valuable coping tool, and being able to express them is important for the well-being of just about every autistic person. There's nothing to be ashamed of. So if you're happy and you know it, flap your hands!
