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!
A few days ago, someone on a social media site I frequent passed along this link to a blog post. It's written by a mom discussing her eleven-year-old autistic son's difficulties in interacting with others. At the end, she enclosed a list of social rules titled, "Jack's Manual."
I know the mom writing the original post was trying to help, and that she meant well. Despite that, as I read this list, I couldn't help but feel that my eleven-year-old self would have been even more confused after reading it. (Heck, I'm eighteen now and I still had to ask my mother for help understanding the reasoning behind rule #12.) That's why I thought it might be helpful to use "Jack's Manual" as a jumping-off point for this blog post: part of a social handbook meant for other autistic people.
The original text is in bold, with my additions/subtractions in bold italics andstrikethroughs, and the reasoning in plain text.
When you are searching for an answer to a question, take your time if possible. Try notto get frustrated. Ask for help if you need it. You can usually take your time, but not always - such as if you're in school or at work and a time limit has been specified. This is a skill that comes with practice. Try not to get frustrated, because it's not a good feeling, but know it's a normal emotion all people go through. Also know that there's nothing wrong with asking for help. Anyone who tells you otherwise is bullying you.
I will wait for you. I will make sure other people wait for you. I will teach you how to ask other people to wait so you don't always have to rely on me. Having someone who will accommodate you is important, especially when you are young (as some adults just won't listen to children). Learning how to ask for accommodations yourself is a small way to become more independent, and needs to be learned as you get older.
Smile when someone gives you a present. Even if you have it already or you don't like itor need it–just smile and say thank you. I've found, "That's so thoughtful! Thanks!" usually covers it. If it's obvious you already have the same thing (such as at a birthday party where two people give you the same gift by coincidence), you can say something along the lines of, "Well, now I have a matching pair!"
Never ask if someone is pregnant, or on a diet, or getting divorced. The first two are usually interpreted as telling the person they're fat. The other means you're being too nosy about someone else's relationship, which is generally not appreciated by neurotypical people (NTs).
AlwaysWhen it's appropriate, ask if someone needs help. If someone looks like they're having trouble carrying something, for example, offer to assist them. Open the door for them if their hands are full. Always asking if someone needs help, however, can be misinterpreted and viewed as insulting. If you're not sure, you can usually just say something along the lines of, "Let me know if you need any help."
Hold the door for the person behind you in the grocery store or the library or the mall when it is sensible. Hold the door if the person is only a few steps away, because it's a kind thing to do. Don't hold a door for someone across the room, because it makes NTs feel awkward. The only exception would be if their hands are full, or possibly if they're a wheelchair user. You don't need to hold an automatic door no matter the circumstances.
Don’t eat salsa off of your chip and then dip it back into the bowl again. It transfers your saliva from the chip back into the bowl of salsa, spreading germs.
Don’t swear.Swear sensibly. Those words make people uncomfortable, and they aren't polite. Even so, you can't really avoid them. They're on TV, in books, and at school (especially at school). Trying out swear words is just part of growing up, but it's important to know the proper time and place to use them. In a formal setting, swearing is not a good idea. If you're with friends, it's more acceptable - but swearing is something that should be reserved for when you're extremely angry or upset. Throwing those words around all the time is rude no matter who you're with. Don't use slurs, as they exist only to hurt other people.
Whisper in the library, and respect their other rules, too. If you want to go to a public place, you have to respect their rules or you won't be allowed to go there next time. Whispering in the library (so people can concentrate on what they're reading) is just one example.
Whisper in the movies. See #9 (although I've always been told not to talk at all in the movies, but maybe this person knows something I don't).
Whisper in the morning.Respect the wishes of those you live with/nearby. I believe the reasoning behind this point was that people might still be sleeping in the morning, but that doesn't mean you have to whisper all the way up until noon. If the people you live with are awake, and you're not violating your building's (or neighborhood's) rules on quiet hours, you don't have to make a point of being extra quiet.
Please, when it’s your turn to bake the cake, bake the cake. Do everything in your power to figure out what is expected of you. (This was in reference to an article that mentioned, in part, an autistic adult whose workplace would have one person bring in cake every Friday. He ate the cake that other people brought in, but didn't realize he was expected to volunteer to bring a cake himself some weeks.) NTs expect you to know unwritten rules without them saying a word about it (how this works, I have no idea). Usually they won't mind if you ask, though. If one person brings in cake on Friday, it's probably just a special treat, but if it happens again the next week, approach them and ask if you're expected to take a turn as well.
Before you say something doesn’t taste good or look nice or sound pretty, take a breath and remember that is autism’s voice trying to talk. Use your voice instead.* find something positive about it and say that, unless you have been asked to do otherwise. If someone asks you to help them with a homework assignment, or they specifically say something along the lines of, "Please give me your honest opinion," they usually want to know the flaws. But if someone makes you a meal, gives you a present, or is showing something they did, they don't want to hear if it's awful. Say it has nice colors, or is a pretty shape, or that it looks like they worked hard on it. Otherwise, it can be hurtful.
Be good, be kind, be respectful, but most importantly, be yourself whenever you can. Harsh truth incoming: in today's world, the overwhelming majority of society will be uncomfortable with you doing anything that makes it clear you're autistic. As autism rates increase, I very much hope the world will learn to accept us, but for right now there are precious few places you can be yourself. Take advantage of them.
* I'm not even sure what this bit about "autism's voice" vs. "your voice" is supposed to mean. You can't separate a person from their autism. There is not a different person "hidden" behind the autism somehow, this is part of who we are and quite frankly, anyone who referred to something I said as "autism's voice speaking" would not be my friend after that. Period. If anyone would like to suggest further clarification or corrections, I'm certainly open to hearing them.
~Hershel Layton, Professor Layton and the Diabolical Box
In communities of disabled people and their allies, there's a clear divide about one part of language. It concerns which is preferable: person-first (e.g., "person with autism") or identity-first ("autistic person"). Some groups almost universally agree on one, while others are more split. The autistic community falls into the second group.
I've heard plenty of arguments about why we should always use person-first language. You aren't defined by your autism. Autism is just PART of you. Saying "she's autistic" only focuses on the things you can't do. We want everyone to know you're a person before anything else. It's just to emphasize that you are not your autism.
But I prefer to be called an "autistic person" rather than a "person with autism." Let me show you why.
Here's an exercise: please describe the person in the photo below using five words or less.
Blond boy. Why are we fine with saying it that way and not insisting he be referred to as "boy who is blond"? After all, being blond is just part of who he is, and it certainly doesn't define him. Nor does saying "he's blond" focus on the fact that he isn't a redhead.
Young boy. Same story here. This is even less defining than the above. A blond person is only blond until their hair starts turning gray, and a young person is only young until they get older. An autistic person is autistic their whole lives. Why are we fine with saying "young boy," a label that will only be applicable for a little while, and yet hesitate to say "autistic boy," something that will always be true about that person?
This isn't the end of it. Why can we refer to someone as an "intelligent person," a "left-handed person," or an "athletic person" and have no problem with it - but then as soon as autism comes into the picture, we suddenly need help remembering they're a person? It all seems to come back to the idea that autism is some terrible, awful thing that no one would ever want to be associated with. There are parts of autism that are bad, and parts that are good, but the way I see it, we're stuck with it. Why not look at it positively?
Boy on a swing set. Once this boy gets off the swing set, he'll still be the same person. The boy and the swing are separable. That isn't the case with autism, which is hard-wired into a person's brain. If you took away my autism, you'd have to take away all of me with it. You can't just remove the "autistic parts."
Because of the nature of autism, it affects a person right down to the way they think and feel. It's different than if you were to say, for example, "a person with HIV." If you could remove the HIV from a person, you'd still have the same person. They are separable. (And this is putting aside the fact that HIV/AIDS ultimately kills, which isn't comparable to autism at all....but I digress.) Even if it were somehow possible to remove the autism from a person, that person's mind wouldn't work the same way afterwards. It's not a side dish or an accessory.
Now, I know my opinion isn't the only one out there, nor is it better than someone else's. So if I came across someone who preferred being called "a person with autism," of course I would respect that and refer to them appropriately. Along the same lines, knowing whether to use identity-first or person-first language doesn't mean you don't have to be conscious of what you're saying. As a general rule, if you aren't sure, swap in another adjective and see. Just as it's not polite to refer to someone as "that Russian kid," nor is it polite to call them "that autistic kid."
But at the end of the day, autism is just autism. It's not automatically a terrible thing, it's just part of who we are. And as long as we aren't afraid to say "blond boy" or "young boy," nor should we be afraid to say "autistic boy."
People should not be ashamed to represent exactly who they are, and which parts of them will always remain. And that, of course, is where autism falls into place quite neatly.
"It doesn't feel real.
But I'm not gonna let it phase me."
~Samantha Greenbriar, Gone Home
A lot of people find it overwhelming when the diagnosis of autism becomes official. Some of us already knew and just needed it from a professional; others are completely blindsided and fall apart, with no idea what to do next.
Before I address that question of what to do after the diagnosis, I want to tell you something. An autism diagnosis does not change a person. Let me repeat that. An autism diagnosis does not change a person. You are the same person today with your diagnosis that you were yesterday without it. The only difference is that now you know what you have, so you can learn more about it, find other people with it, and understand more about how to help yourself. Diagnosis is a good thing.
Your environment - past or present - did not cause this. Nor did your parents' style of raising you. Babies show signs of autism as early as a few months old (source). If you're autistic, you have always been autistic. You just didn't know it yet.
What you do after the diagnosis depends on age. But before I get into this, let me just say one more thing: if you don't feel comfortable doing this right away, that's okay. Take a few days or a week, get used to the idea of having autism, and then go forward. A week is not going to make a difference in the grand scheme of things, but your attitude very well might. Services cannot really help you if you're not willing or ready to be helped.
If you're a parent of an autistic child, be aware that your kid will take their cues about autism from you. If you associate autism with stress, so will your child. The reason this is so critical is because you are capable of removing yourself from the autism (whether or not you choose to is a different story). They are not.
Toddlers and Preschoolers
Services for kids between 18 months and 4 years are pretty widely available. The professional who diagnosed your child may be able to tell you what would benefit them most, or you may have to look into additional assessments. If your child is younger than three and you're in the US, this is typically done through a child and family center, or independent programs. Three- and four-year-olds are given services through the school district, even if they aren't in preschool.
Some services are covered by insurance, others are not. Your options are likely to include:
Specialized preschool. In some areas, your child may be eligible for free or reduced cost preschool.
Feeding therapy is available for children age three and under who have difficulty in this area. With a slightly older child, a visit to a private therapist or children's hospital may be necessary.
Speech therapy if there is a significant speech delay or other issues.
Tools such as AAC devices are covered under most insurances if your child could benefit from one.
Occupational therapy to help with fine motor skill development and very basic self-care skills, like feeding oneself.
DIR or floortime therapy to assist your child in reaching developmental milestones.
A designated session with a therapist or with other children to practice social skills. For example, the therapist may guide the children through the steps to a successful conversation. ("Matthew, that's great that you shared how you spent your weekend. What could you ask so that others have a chance to join in?" If he's unsure: "Can you ask Sarabeth how she spent her weekend?" And so on.)
Your child may be eligible for a service dog. Resources are here, here, and here. You can also search for programs in your region here.
Applied Behavioral Analysis (ABA). This is very controversial among the autistic community. Some children improve tremendously, while others have suffered abuse and come away worse off than they were before the therapy. If you feel ABA would benefit your child, please keep an eye out for warning signs. See my post here, and an analysis by a parent over here.
Look for research studies in your area that may be able to further autism services, and help you and your child.
At this time, I have not been able to locate any resources geared to very young children that do not show autism in a wholly negative light.UPDATE 10/2015: The show Sesame Street now has an autistic character, and offers information on her disability. Resources available here; the storybook in particular is very accessible to young children.
Elementary School
Once your child enters kindergarten, you will need to be informed about your rights in regards to their education. There's a lot that can be done to help your child succeed, but you may have to request it specifically. Look through the district handbook, as these vary between states and districts.
If your child attends public school, the school is legally required to provide a free appropriate public education in the least restrictive environment. This means you cannot be charged for services given through the school. Although the district cannot force your child to attend special education classes until all other options have been exhausted, it may be recommended. Some kids are mainstreamed, others attend special education all day, and some spend part of the day with typical peers and part in special education.
Your options may include:
A 504 Plan if your child can be mainstreamed but needs services to succeed, or an IEP (Individualized Education Plan) if your child would learn better in special education classes.
Special education classes if necessary.
A specialized summer camp or extended school year can be written into a child's IEP. This is different from summer school, and will vary depending on your child's abilities. Stay educated on your rights and options, particularly when the time comes to transition to middle school.
Life skills classes to prepare your child for living independently one day. Your child might learn how to make a bed or load a dishwasher.
Speech therapy if there is a significant speech delay, or related issues such as stuttering.
Tools such as AAC devices are covered under most insurances if your child could benefit from one.
Occupational therapy to help with fine motor skill development and basic self-care skills, like getting dressed independently.
DIR or floortime therapy to assist your child in reaching developmental milestones. Note that this may not be an option in the later elementary school years.
A designated session with a therapist or with other children to practice social skills. For example, the therapist may guide the children through the steps to a successful conversation. ("Matthew, that's great that you shared how you spent your weekend. What could you ask so that others have a chance to join in?" If he's unsure: "Can you ask Sarabeth how she spent her weekend?" And so on.)
Your child may be eligible for a service dog. Resources are here, here, here, and here. You can also search for programs in your region here.
Applied Behavioral Analysis (ABA). This is very controversial among the autistic community. Some children improve tremendously, while others have suffered abuse and come away worse off than they were before the therapy. If you feel ABA would benefit your child, please keep an eye out for warning signs. See my post here, and an analysis by a parent over here.
Look for research studies in your area that may be able to further autism services, and help you and your child.
Services outside of school are fewer once you reach middle school, but there's still plenty through the school system. A lot of it will depend on your area and schooling situation.
If you attend public school, the school is legally required to provide a free appropriate public education in the least restrictive environment. This means your parents cannot be charged for services given through the school. Although the district cannot force you to attend special education classes until all other options have been exhausted, it may be recommended. Some students are mainstreamed, others attend special education all day, and some spend part of the day with typical peers and part in special education.
Your options may include:
If you are at least 14 (16 in some areas), you may attend basic job training. Work experience is also offered at some schools, either at the school or at an outside location.
A 504 Plan if you can be mainstreamed but need services to succeed, or an IEP (Individualized Education Plan) if you would learn better in special education classes.
Special education classes if necessary.
A specialized summer camp or extended school year can be written into your IEP. This is different from summer school, and will vary depending on your abilities. You and your parents need to stay educated on your rights and options, particularly when the time comes to transition to high school, post-secondary education, or college.
Life skills classes to prepare you for living independently. You might learn how to do laundry or make easy meals.
Speech therapy if you have a significant speech delay, or related issues such as stuttering.
Tools such as AAC devices are covered under most insurances if you could benefit from one.
Occupational therapy to help with fine motor skills and self-care skills, like performing basic household chores.
A designated session with a therapist or with other students to practice social skills. For example, the therapist may guide you through appropriate dialogue. ("Caroline asks if you want to go to the movies this weekend. How could you tell her politely that you don't want to go? What if you do want to go, but on Friday, your parents ground you for something you did? How could you tell her?")
You may be eligible for a service dog. Resources are here, here, and here. You can also search for programs in your region here.
Applied Behavioral Analysis (ABA) is not generally started at this age, but may be continued if you were receiving it when you were younger.
Look for research studies in your area that may be able to further autism services, and help you and your family.
Past the age of 18, some adults attend a post-secondary school to help them further their life skills. Services will still be available to you through the school district until you reach age 22.
Unfortunately, once you graduate from high school or post-secondary education, there are not as many services available to you. This is one of the flaws of the system today, but that doesn't mean there's nothing you can do.
Some services are covered by insurance, others are not. Your options may include:
Job placement, or a spot at a workshop where you will be able to start your career and get paid fairly.
If you live in the US and are unable to work due to autism, you can apply for disability payments. A thorough guide to doing this is here (don't be fooled by the design of the site; the information is still applicable to anyone applying for disability). Sorry, I'm not familiar with resources from other countries in this respect.
If you are in college, your 504 Plan or IEP from high school can follow you. Contact your disability office and find out how they can help.
Tools such as AAC devices are covered under most insurances if you could benefit from one.
You may be eligible for a service dog. Resources are here and here.
Live-in caregivers if you are able to move out but need help with your day-to-day life.
Group homes if you need more intensive help with your day-to-day life but are not able to live with your parents.
Look for research studies in your area that may be able to further autism services and help you.
I'll be updating this post in the future if and when I learn more. If you know of any resources not included here, please feel free to leave them in the comments to help others.
Inspired by part of this post from Tumblr user lauralot89.
This is a work of fiction, which does not make the very real ideas presented within any less painful.
Scheduled conferences about autism are a regular thing in this world. They're held all the time, and whenever a conference is coming up, autistic people sneak into the room a little beforehand. We're required by the neurotypicals (NTs) to wear a label, large and bright, so everyone can see the label just by looking at us. There are only two labels: High and Low.
The Highs are verbal, and the Lows are not - that's the only thing consistent in these groups. Some Highs and Lows alike are able to work. Some have live-in caregivers or are still living with their parents. Some drive, or are able to rely on public transportation in their area to get where they need to go. None of this is really taken into consideration when we receive a label. All that matters is whether or not we can speak.
When we are all together, the labels don't matter. We understand each other. When someone needs to leave the room to get some space, it doesn't matter if they are a High or a Low. When a Low shows us a new way of communicating - whether by typing, writing, using text-to-speech, PECS, or anything else - everyone else, High and Low alike, pays attention and adapts so they don't feel left out. We have people just like us here, and that's invaluable.
But now the conference is beginning. In come the NTs. They look around the room at us and sigh. They don't want to have a meeting this way.
The Highs voice that they want to participate, but are sent outside anyway. "You aren't anything like the Lows. I know you have a diagnosis from a professional, but you act differently than we expected; clearly, you'll never know what it's like to really have autism. You can do things the Lows will never be able to do, which we know for a fact, because we're fortune-tellers and can predict the next half-century or more of every single Low's life. Oh, I know it's an autism conference, but we're only going to talk about Lows. Go play outside."
Next, they pat the Lows on the head and smile, telling them very slowly that it's fine to stay in the room, but all of them have to sit under the table. Won't that be fun? Please don't bother us. We have important things to talk about. Okay? Do you un-der-stand?
They begin the conference.
"My son is a Low!" one NT announces. "It's just such an awful burden on the whole family. Yesterday he banged his head on the wall so hard, I had to make sure he didn't have a concussion. Didn't he take the time to think about how hard it is on me to do something when he's in pain? Oh, and before he banged his head, he'd been trying for more than fifteen minutes to ask me to turn my music down a little because it was too loud. Do you think that might have something to do with it?"
Her son sits at her feet under the table. He can hear every word, but because he is a Low, she's decided he can't possibly understand. She's also taken the tablet he uses to communicate, so he can't possibly interject and "bother" them by explaining his head-banging is a stim, a way to cope with being so overloaded by the music that he couldn't think.
The Highs rap on the window, try the door over and over, do everything they can think of to try and get inside. NTs roll their eyes at them and go back to talking.
"So I was thinking, we should really figure out how to cure autism, or invent a prenatal test to abort autistic fetuses," one announces. "I'm not autistic myself, and I've never asked a single autistic person about it, but I just know all 70,000,000* or so of them desperately wish they weren't autistic or had never even been born. I think we should - "
"Wait a second. Where's that one father who was here last week?" another interrupts to ask.
"Wow. Those poor parents, they were so overwhelmed, they must have just snapped."
Outside, the Highs begin to weep. They weep not just for the names mentioned, but also for Katie McCarron, Ryan Davies, Scarlett Chen, Christopher DeGroot, and so many others. They weep because none of the words at the autism conference are aimed towards the autistics themselves, the ones who were tortured, or starved, or poisoned, or beaten, or neglected, or any other number of unspeakable things.
A NT sighs, hearing their sobs. "Now I understand why we don't let them stay inside when we have meetings," he declares. "They're so rude, acting like that while we're right here trying to discuss. Don't they have any empathy for other people?"
The Lows are still huddled under the table. They have been crying for some time.
(* Roughly 1% of the world population is autistic. Source here. The world population is over seven billion as of this writing, which equals over seventy million autistic people worldwide. For comparison, the United States has a population of nearly 319 million, meaning there are over three million autistics in this country alone.)
"Even if you think a lie is helping, it usually ain't.
Someday that person'll learn the truth,
and you'll have to look him in the eye."
~Kyle Hyde, Hotel Dusk: Room 215
Every time I hear a parent worrying about how to tell their child they're autistic, or worse, announce that their kid doesn't need to know yet, I cringe a little. Although they may mean well, it all comes from the same thought process: that being autistic is bad, that it's at the center of all their problems.
It's not. Autism is just autism. If you're looking for a sign, this is it: let your child know they have autism. Today.
You aren't doing your kid any favors by hiding it from them. If they socialize at all with other people in the world, and especially if they're in school, I guarantee you THEY ALREADY KNOW.
Now, I don't mean they know they have autism, but they know that something is different about them. I was twelve years old before someone saw my symptoms for what they were, and that evening I went home and did as much research as I could manage. Not because I was afraid, but because it was freeing.
I found the criteria from the current DSM and took tests and read, read, read. By the end of the week, I knew (side note: I was later officially diagnosed by professionals). Rather than being afraid, I was grateful for the "label" of autism. I realized there was a reason I seemed so much different from my peers, didn't always understand what people were saying, and had trouble regulating my tone and body language. Not only that, but I wasn't the only one who was like this. There were thousands of people out there just like me, and the autistic community was out there, happy to welcome me with open arms.
Finding out about autism can be a huge relief, whether you're the one who discovers it or someone else tells you.
Yeah, but...how do you do that? What if it makes him think less of himself? What if it leads to her not trying as hard and using her autism to excuse that?
We aren't born understanding disability. We get a sense of it from the people around us and from society. It's the same as anything else. Chances are, if your child is fairly young, they don't even really know what the term means.
You don't have to say it in any special way. Just tell them. There's no need to overload them with information - just say it, and wait for a response.
For example, you might say something like: "Do you remember we talked about how when school starts, you're going to be in a special class? You're going to be in the special class because you have something called autism."
If the child asks what that means, you can give them a brief, age-appropriate explanation. Make sure you don't portray autism as wholly bad. Doing so is extremely detrimental to someone's self-esteem. We're autistic for life, and it affects everything right down to how we think and feel. Autism isn't a "bad guy" or "monster" in our heads, it's just something that makes us different.
That's actually one good way to approach it with kids. "Autism is something in your brain that makes you think differently. There are lots of other people out there who have autism. Some of them are kids your age, and some of them are grown up. If we get to know other autistic people, we'll know more about the way you think, and some of them could become your friends, too."
If you focus on the "can'ts," so will your child. If he grows up constantly hearing, "Oh, he can't do that. He's autistic," pretty soon it'll be him saying, "I can't do it because I'm autistic." That is where using autism as an excuse comes from. Autism should be an explanation, not an excuse. Kids take their cues from their parents. Focus on how you portray autism, and they'll pick it up.
As always, books are a great resource for helping kids learn more. Here are a few recommendations:
I Love Being My Own Autistic Self! by Landon Bryce. This is a great introduction to what autism is, and explains it in a way even younger children can understand. It portrays different points of view from both autistic and neurotypical characters, with the emphasis on the neurodiversity movement.
Different Like Me: My Book of Autism Heroes by Jennifer Elder. The book recommends itself for kids between the ages of eight and twelve. Plenty of famous and important people from history are detailed inside, both their accomplishments and how autism affected them, even though the term "autism" wasn't around when many of them were living. (Note that this book does use the outdated term of Asperger's, but it would be suitable for kids who fall anywhere on the spectrum.)
Loud Hands: Autistic People, Speaking by Julia Bascom. Perfect for autistic teens and adults, this is a collection of essays written by and for those on the spectrum. There are plenty of different perspectives offered, and so many topics are covered. It's even published by the Autistic Self-Advocacy Network, which is a great resource.
It's time to tell your kids that they belong to the autistic community. We'll be waiting to welcome them, regardless of age or ability.
"The measure of an individual
can be difficult to discern by actions alone."
~Thane Krios, Mass Effect 2
Autism and therapy tend to go together, especially for autistic children. There are therapies designed to help autistics improve motor skills, work on speech, and fine-tune their social interactions. One commonly-recommended therapy is ABA (Applied Behavioral Analysis). It's also one of the most controversial. Some parents claim their child made huge strides with ABA, but meanwhile, at least one child out there has developed PTSD from it.
All therapies - including ABA - can be beneficial, but they also carry the potential to be harmful or even abusive. I wanted to talk about the warning signs that may signal the therapy is doing more harm than good, whether in the short term or the long term.
(Note: I do refer mainly to the autistic person as a child in this post, because there are very few - if any - therapies designed for teenagers or adults at the time of this writing. If your situation is different, please mentally edit in the appropriate word in place of "child.")
Red flag: Regular protesting or agitation when it's time to go to therapy.
I know, everyone has bad days sometimes. Chances are you don't get excited about going to work every single day, but if every time you have to go to work, you're in an awful mood and dreading it, chances are something's wrong. Similarly, if a child gets upset every time they have to go to therapy, it's time to sit down and ask very careful questions about what's wrong. If they can't or won't explain, sitting in on a therapy session might be a good idea. Any therapist who refuses to let you observe a session (key word observe - not interfering with the therapy) is another huge warning sign.
Red flag: Therapy is extremely intensive and/or doesn't allow for breaks.
This is more important the younger the autistic person is. I've heard horror stories of three-year-olds recommended for forty hours a week of therapy - that's as much as a full-time job. With eight hours of therapy added to the recommended twelve hours of sleep, plus time for meals, transportation, hygiene, and so on, now that child has five days out of the week jam-packed, every single week. No time to see friends, no time to play at home, no time just to relax. That's not healthy for anyone, especially not a preschooler.
Long therapy sessions should either have time set aside for a break here and there (again, more frequently the younger the person is), or at least allow it if the autistic person asks for a break. Therapy is designed to stretch a person outside of their comfort level. Doing that for any length of time can be exhausting.
Red flag: The child's personal boundaries are violated, and/or they are not allowed to say no.
As sickening as it is, there are predators out there who prey on the autistic. In fact, disabled kids are almost three times more likely to experience sexual abuse than those who aren't disabled. It's important for all children to know that their bodies deserve respect, but this is especially true for those with autism.
Because a common trait of autism is not liking touch (either in general or just certain touches), there are therapists who will try and work on this. Forcing or trying to persuade a child to hug or kiss anyone, even family, or touching them in any way without permission can open them up to risk of abuse in the future. People of all ages need to know and understand that their body belongs to them, and that they can and should object if anyone tries to harm them.
Red flag: Some or all of the therapy goals focus solely on making the person act "normal" or "like everyone else."
You can't remove autism from a person, or "cure" them, or anything of the sort. You just can't. Throughout my life, people have tried to teach me appropriate eye contact, the right way to make small talk, and not to flinch away or start stimming from discomfort at the texture of styrofoam. None of this hurts anyone, so why did they want to train it out of me? My best guess is that they just wanted me to seem more "normal." All the years of making me feel stupid and self-conscious, and it brought next to no progress. Autism is always going to be there.
Abuse: Food or other basic necessities are withheld at any time, even briefly.
No child should ever be told they can't use the bathroom until they ask "properly" (verbally instead of nonverbally, or with better pronunciation, or asking without flapping their hands, etc). Similarly, food shouldn't be denied because the autistic person isn't doing exactly what the therapist wants.
Abuse: Nonverbal, or imperfect verbal, communication is ignored.
It's a story I've heard more than once: a child with severe speech delays is sent to therapy to improve their communication skills, and the therapist ignores everything but perfect speech. He wants a drink of water and points to the water jug (or signs water, or says, "Wawa," etc), but it isn't given to him. At best, he's ignored completely; at worst, his attempts to communicate are mocked or belittled while he's left to dehydrate.
(Assuming improved verbal communication is a goal in this situation, a good therapist will take the chance to gently work on asking for water, let the child try a few times, and then give him some regardless of whether or not he made progress.)
Abuse: The person is not allowed to stim at all.
This one has a two-part answer. Yes, there are stims out there that need to be dealt with, but they're either harmful (head-banging, biting, hitting, etc) or destructive (peeling paint off the wall, spitting on things, and so forth). Working on these kind of stims is not abusive. However, eliminating them is often much harder than redirecting. A child can be taught that hitting people isn't okay, but she's allowed to hit a pillow, for example.
What's abusive is not allowing any kind of stimming, even those that are harmless (hand-flapping, rocking, standing on tiptoe, etc). For autistics, stimming is very helpful and sometimes even essential for regulating our emotions and preventing meltdowns. To add to that, trying not to stim is like trying not to scratch an itch: it consumes more and more of your energy until you're slowly going out of your mind trying not to do it. There is nothing wrong with harmless stimming. Period.
Abuse: You'd consider it abuse if it was being done to a neurotypical child.
Plain and simple. They may call it therapy, but if anything is being done to your child that you consider unacceptable, it's time to listen to your instincts.
After that list, it might sound like therapy is just a list of negatives, but there are absolutely good therapies out there as well. Assuming a therapy doesn't include any of the above points, it's generally a positive experience for all if:
The therapist is engaged with their clients, and seems to genuinely like their job.
The autistic person feels happy and respected.
You're given, but not pressured into, ways to continue working towards the goals outside of therapy.
Everyone gets along.
The autistic person is treated like a person, not a problem to be fixed.
Therapy can help a lot. The important part is making sure everything is in place for that to happen.
April is Autism Awareness Month. Every April 2nd, the charity Autism Speaks has an event encouraging people to "Light It Up Blue," i.e., wear blue shirts to spread awareness.
Please do not do this. Not if you know someone who's autistic, not if you have an autistic child, not if you're autistic. Autism Speaks is a terrible charity.
They create content designed to portray autism as frightening and awful. For example, this video, "Autism Every Day":
(Note: This video is not something you want children overhearing, particularly if they're autistic.)
The entire thing is shocking and heartbreaking, but the part that stuck with me was when Alison Singer said she'd contemplated driving herself and her autistic daughter off a bridge so she didn't have to enroll her in a special school, and the only reason she didn't was because she has another child.
As if saying this with her autistic daughter in the same room wasn't bad enough, this woman used to be one of Autism Speaks's executives.
According to them, autism is a "crisis," something that causes children to "go missing." Even their logo is a puzzle piece to show that autistics are "missing a piece of the puzzle," and that autism is a puzzle to be solved.
We are not puzzles. We are not missing. We're right here, and we're just as complete as you are. Autism Speaks does not have a single autistic person on their board of directors. They're speaking about us without us. A lot of their board members have autistic children, but not a single one has autism themselves.
How, exactly, can you call your charity "Autism Speaks" and not have even one autistic person speaking alongside you?
Autism Speaks aims to prevent and cure autism. Right on their about page, it says they're funding autism prevention and cures.
Well, autism is hard-wired into the brain. The only way you could remove it would be to transplant a brain, which isn't possible - and even if it could be done, you'd lose the entire person, not just their autism.
The only way to prevent autism would be to make sure that autistic people aren't born. The only way to cure autism would be the murder of autistic people.
Autism Speaks has an alliance with the Judge Rotenberg Center. This is a facility that does such disgusting things I don't even feel comfortable typing them out.
The JRC uses electric shocks not just to remove problematic behavior (although that would be bad enough), but also to eliminate harmless stimming, and for completely normal behaviors such as crying, saying "no," and getting up without permission.
They leave people in restraints for prolonged periods of time, withhold food, and cause severe psychological damage. They treat autistics in ways not fit to treat a dog, and have caused multiple deaths as a result.
Here is the beginning of a four-part series written by a woman who survived the JRC program. It is stomach-turning and extremely difficult to read. For many autistics who have done nothing to deserve it, it is a reality.
Autism Speaks spends less than 1/20 of their annual budget on family services. According to their 2010 990 Tax Exemption Form, 21% of their budget went towards "awareness and advertising." 5% went to paying salaries and other administrative costs (some salaries are upwards of $400,000 a year). Meanwhile, just four percent went to family services.
Oh, and let's not forget the time they rescinded a job offer because the woman they wanted to hire asked for accommodations for her autistic son. (The kicker? She was asking to get off early one day a week, and offered to make up the hours another day or take a pay cut.)
"Lighting it up blue" erases autistic girls. Autism Speaks has gone on record as saying that they use the color blue to represent boys with autism because "Autism Spectrum Disorders are almost 5 times more common among boys (1 in 54) than among girls (1 in 252)." So are approximately 20% of autistics out there not worth considering? Is it worth disregarding the fact that they exist because there aren't as many of them? Apparently, as far as Autism Speaks thinks.
Do not light one single thing up blue tomorrow.
Let's celebrate autism ACCEPTANCE, not awareness.
And in celebration of autism acceptance, let's support the Autistic Self-Advocacy Network, and leave Autism Speaks in the dust.
