Please Don't Call Yourself an "Autism Mom"

"Is a man not entitled to the sweat of his brow?

... 'No,' says the man in Moscow, 'it belongs to everyone.'

I rejected [that answer]. Instead, I chose something different."

~Andrew Ryan, BioShock

There was an article that ran today in the Huffington Post. It's titled, "Why I Call Myself an 'Autism Mom.'"

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 issue is 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?

If not, how would you like them to answer him?

50 Ideas for Sensory Input

"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.

1. Jump rope.
2. Bounce on a trampoline...
3. ...or exercise ball.
4. Hit a punching bag.
5. Set up appropriate lighting and make shadow puppets.
6. Play flashlight tag with a group.
7. Use a straw to blow bubbles in milk or another drink.
8. Build a snug fort out of blankets or couch cushions.
9. Chew gum.
10. Eat sticky or hard to chew foods, like peanut butter or caramel.
11. Lie under a weighted blanket. (If you don't have one, try layering blankets on top of each other.)
12. Play with kinetic sand, Play-Doh, or "slime" made by mixing cornstarch and water.
13. Go swimming.
14. Take a bath. Bubble baths provide an extra sensory experience.
15. Climb a rope ladder.
16. Experiment with yoga poses that put pressure on different areas of the body. (Here's a list of ideas to get you started.)
17. Be massaged.
18. 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.)
19. Rock in a rocking chair.
20. Play in a ball pit.
21. Use a foam roller to exercise...
22. ...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).
23. Lie or swing in a hammock.
24. Bang on a drum.
25. Play the xylophone.
26. Put on a body sock.
27. Finger-paint.
28. Dance. Switch up the music if it isn't meeting the level of stimulation you need.
29. Ride a bicycle...
30. ...or skateboard.
31. Do jumping jacks or donkey kicks.
32. Play tug-of-war.
33. Sing.
34. Turn on a lava lamp and watch. Being in a dark room heightens the effect.
35. Play in a sink or large bowl of soapy water.
36. 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.)
37. Bury your hands in a container of uncooked rice, dried beans, or flour.
38. Spin on an office chair, or use a toy that provides the same movement (like Sit 'n' Spin).
39. Do wall push-ups.
40. Apply or spray strong fragrances, like essential oils.
41. Give or receive a tight hug.
42. Turn somersaults...
43. ...or cartwheels.
44. Ride or be pulled along on a scooter board.
45. Push someone in a wagon.
46. Lift weights.
47. Do a handstand.
48. Try wheelbarrow walking.
49. Drink soda or carbonated water. Anything that fizzes in your mouth will do.
50. 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.

Easing the Stress of Back-to-School for Autistic Preteens and Teenagers

"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.

Wishing the best of luck to everyone reading.

Interview at Embracing the Spectrum

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!

Ten Important Questions about Autism Answered

The Ins and Outs of Harmless Stimming

"I say [the same thing] a lot.

It makes things clearer,

takes away doubt when everything is crazy."

~Merrill, Dragon Age II

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!

Social Handbook: An Open Response to "Jack's Manual"

"[Y]ou will get a little bit faster every day

until you're the best around."

~Rudy, Animal Crossing

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 and strikethroughs, and the reasoning in plain text.

1. When you are searching for an answer to a question, take your time if possible. Try not to 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.
2. 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.
3. Smile when someone gives you a present. Even if you have it already or you don't like it or 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!"
4. 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).
5. Always When 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."
6. 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.
7. 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.
8. 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.
9. 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.
10. 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).
11. 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.
12. 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.
13. 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.
14. 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.

"Autistic" Is Not a Four-Letter Word

"A gentleman pays attention to his manners.

In every setting."

~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.

Source here

So what did you come up with?

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.