Learn Karate and Social Skills to Become Either a Victim or “Above The Game”

When I was a kid, I took martial arts lessons (not actually Karate, but something similar). I think my parents thought it was a good idea for two reasons – they wanted me to participate in something with other kids and they wanted me to learn to defend myself.

It didn’t work. Now, granted, I only did this for a year, so I suspect I lacked much insight or experience, and certainly learning from one instructor in one dojo doesn’t imply anything about any other instructor or dojo. But I do think I can talk a bit about why it didn’t work for me, at least with my limited experience.

First, the easy one: I didn’t bond with the other kids. Kids in the dojo, just as kids at the playground, recognized I was different. I didn’t fit. And I never would with them. Putting on a special outfit doesn’t change that. It ignored the problem by simply changing the setting – I don’t get along with kids in school, so maybe somewhere else I’ll get along with them. But it never addressed the root of the problem, just the setting where it occurred. But that’s not what I’m trying to write about today.

For the self-defense aspect, that didn’t work either. Sure, I learned a few blocks, kicks, and punches. I learned to stand one foot in front of the other. So I learned a bit of the basics. But even if I learned the advanced stances, blocks, kicks, and punches, and could perform them well, that wouldn’t have helped. I was missing something: the application. Memorizing muscle moves (even making them part of muscle memory) isn’t the same thing as being able to quickly analyze a situation and determine how to respond. I was smart enough to know that, even when being attacked by other kids physically, most of my moves would end up getting me beat to a pulp even quicker. Running was a better tactic – and I already knew that before class!

Now, I’m sure that plenty of people have used martial arts in self-defense, and that’s good. And maybe I should seek out a better instructor and dojo and learn now. So I realize the limitations of what I’m saying. But the key is that I wasn’t taught how to dynamically respond to a real-life situation, just how to statically respond to a scripted situation. There’s a huge difference between what the “attacker” might have done in the dojo and what he might have done behind the wall at school.

Did you see that? I told you the problem with social skills training, too – learning to respond to a scripted situation isn’t helpful.

Too much of today’s social skills is focused on the same stuff. Seriously. To be honest, I think the training methods may be why autistic guys too often think there is a magic set of steps to essentially get to have sex with a girl. They’ve spent too much time learning formulas, techniques, and scripts. We saw on Kickstarter this week when a “seduction guide” entitled Above the Game that sought funding. Among many problematic parts, the guide told the message that guys don’t have to listen to the girl, they can basically force themselves on her. Fortunately, Kickstart has since removed the guide and attempted to make amends. Kickstarter eventually recognized that the guide is standard “if you want sex, be an asshole” garbage.

The book is appealing to a certain subset of sex-craving men (now I’m not saying this group is generally autistic people or anything similar – although autistics, neurotypicals, and plenty of other groups all have these men in their midst). After all, it says that all the standard dating advice (you know, stuff like “don’t force her to engage in sexual contact without consent”) is wrong. That’s important – it’s appealing to a group of guys that haven’t had the success they want, and they may have even tried (or thought they tried) the “standard” formula. So this is a new-and-improved formula, one that “actually works” (Uh, until you do find a woman that can defend herself – you might end up rightfully having a coffee mug shatter against your own mug; But, sure, rape will get you sex if you’re able to overpower her).

The underlying premise of this seduction guide and all other seduction guides (besides for teaching people to be assholes) is promotion of the idea that there is a formula that you can follow to make – overpower if you will – people do what you want them to do. Give them the right input, you get the output you crave. Maybe it’s sex, maybe it’s something else.

That’s also the premise for much social skills work. You want someone to listen to your special interests? Pretend to be interested in them for a bit. Then you get what you want. Simple. You have control.

One fairly popular – but fairly ineffective – way to teach social skills is “social stories.” It’s ineffective for the same reason my Karate lessons were ineffective: a bunch of techniques or responses to scripted situations doesn’t teach the improvisation necessary in dynamic social situations (you know, like the…uh…”real world”). While it doesn’t have the formality of formal social stories, a variation on this is talking through a make-believe situation and doing role-playing to figure out how to respond. The problem is that this teaches someone a make-believe situation, not the real-life. In real-life, the other person (or group) is going to veer “off-course” pretty much immediately, leaving you lost if you’re expecting scripts to get you through things.

I’ve also seen this with AAC (augmentative and assistive communication). One of the first things people learn when they use (or see someone use AAC) is that it’s slow – painfully slow sometime. The obvious, but wrong, solution is to create a system that stores sentences or thoughts as a whole unit. There’s just one problem – it turns out that even things you think you say all day long are actually unique to the situation most of the time. Sure, sometimes some stored phrases in an electronic device have use, but if you expect more than 1% of your communication to be accomplished that way, you’ll be in for a big surprise when you try.

Karate, seduction guides, social stories, and stored-sentences all have this in common: they work great in a make-believe, scripted situation. And they’ll cause you pain and hurt if you don’t also know how to handle course changes and improvisation.

Another problem with Karate, seduction guides, social stories, and stored-sentences is that they may just plain be the wrong thing, even in a situation that is very similar to the scripted situation. For instance, an example PDF of social stories includes:

Stethoscope –
The doctor will listen to my chest with a stethoscope.
This helps him/her hear if I am breathing properly and my heart is working well.

The doctor will lift up my shirt, put the stethoscope against my chest and ask me to
breathe in and out.
The stethoscope will feel cold and may tickle but it will not hurt.
I can do this for the doctor and he/she can tell I am ok.
The doctor will be happy and mum will be happy.

Really? It won’t hurt? How does the writer of this story know? They might know it doesn’t hurt themself, but they have no idea about someone else, particularly if that someone else has sensory differences! Certainly it would be better to talk about how the stethoscope may be uncomfortable or cold, but won’t cause lasting hurt them even if it feels like it will. Maybe it’s better to explain “it will be over quickly.” I’m also not a fan of the outcome where the kid is okay – maybe he is, maybe he isn’t – maybe the doctor actually finds something going on. Maybe he/she can tell me if my heart and lungs sound ok. And, no, mom and Doctor better not be happy if he does find something, but they should be happy they found it and can provide medical help.

Is there value in the above? Certainly – you can explain what things someone might expect before a situation. But, once you start making assumptions about how they will experience sensations, or once you start (like most social stories) expecting things to follow a script, there are problems.

There’s tons of other criticisms from autistic adults on many social skills training programs – I won’t go into things like how they may be making an unreasonable demand on an autistic person (“don’t stim” or “look at the person talking” come to mind) that may be counter productive.

What’s a better approach? I’m not entirely sure. But I know we (autistic people) need accurate information. We need accurate information about how to appropriately satisfy our sex drives (hint: it’s not through raping women), deal with the doctor’s office, or defend ourselves from bullies. But, in addition to being accurate, the information needs to teach flexibility and thinking, not just a bunch of memorized sentences, techniques, or scripts. There’s no magic method here – it’s hard stuff for anyone to learn (and even harder to teach). People aren’t tools I use to get what I want. I treat them decent not only because that might help me get something I want, but, more importantly, because it’s simply the right thing to do.

I’m not doing that

Apparently I’m confrontational. This is to the people who think this.

I’m too abrasive to do effective advocacy.

Too rude.

Too direct.

Too inflexible.

It’s because I say things like, “Autistic people, not non-autistic family members, should be directing the autistic advocacy movement.”

That means exactly what it says. It doesn’t mean that non-autistic parents shouldn’t speak up (or, indeed, speak for their kids at times) for the good of their kids. Nor does it mean any of 1000 other things that people read into it.

But that’s not how people too often hear it. And I’m the one who is supposed to translate my language into something that nobody can take what I left unsaid and make it say something I didn’t say. Something like “parent’s shouldn’t be involved in autistic advocacy” or “non-autistics are bad people” or whatever else I didn’t say.

Sorry. I’m not doing that.

I’m sick of disclaimers. I already have to put too many in place – see the above three paragraphs!

If I say, “people shouldn’t mention lack of services in the same sentence as discussing the murder of an autistic person by their family,” people think I’m saying that lack of services isn’t a legitimate problem. Well, I’m not. And I’m not going to write four paragraphs every time I say something like this to explain that, no, I didn’t say anything about your stress level or ability to get services your child needs.

Sorry, I’m just not doing that.

Nor am I going to pretend that non-autistics that are trying to appropriate my community’s identity are okay. It’s not. There is a difference between someone experiencing autism in themselves and someone experiencing it in someone else. Sure, someone else might have tremendous love and insight – which is awesome and great. And they might say and speak and do great things that help many people. I too will celebrate it. But it’s not your identity. It might be your kid’s, which means you care what happens. That’s fine.

I know there are decent neurotypicals (and, no, neurotypical is not an insult). I shouldn’t need to say that every single fricking time I write something!

I certainly shouldn’t need to go further and constantly gush over the people who do it right. You don’t become an ally so you can be gushed over. It shouldn’t be necessary. If I compliment or acknowledge goodness, that’s a fine thing. But it shouldn’t be required of an autistic person doing advocacy!

I’m asking for my community’s allies to loose a bit of defensiveness and not read everything written by members of the community they are advocating for as if it might be hateful towards them. I’m not hateful of neurotypicals. Nor are most of us (I’m sure someone can find counter examples of hate from autistics, but that’s not the point – I’m not claiming my community is perfect). Heck, I’m one of the first typically to call out an autistic who implies that all neurotypicals are evil or bad or hateful. But by the same token, I should be able to write about discrimination and problems we experience in a world not designed for us without everyone thinking that I’m implying all neurotypicals are bad or evil.

Our ability to speak about our own community should not be dependent upon being good little autistics. It shouldn’t be dependent upon people not seeing any way to take our words wrongly. It certainly shouldn’t be dependent upon people who claim falsely to be allies feeling good about our words. If you’re only our ally when we’re polite and nice and have the right disclaimers, you’re not a good ally!

For those allies that get this, thank you. We do appreciate it.

Microagression and Microavalanches

There’s a word coined in the 1970s – maybe earlier – around race that perfectly describes what a minority group experiences most of the time for prejudice among a supposedly enlightened society: microagression. This is, for many people, the thing that makes their life hell. What is this prejudice?

Hint: it isn’t violence or threats of violence.

It can also be the little stuff, the stuff that day-in and day-out someone faces. It’s the stuff that if it happened one time would truly be no big deal – but because it happens all the frickin time – these little things become an avalanche. And, of course, when the person experiencing this crap day and night dares to say something about it, they are blowing things out of proportion. After all, “it wasn’t that bad.” No, in isolation it wasn’t. And “they meant no harm.” Maybe, maybe not, but prejudice still hurts and action must be taken to stop it. And this action isn’t “get the victim to do the educating.” You see, that’s yet more microagression.

Probably the best way to explain microagression is to give examples:

  • A hispanic person is asked, in the US, “do you speak English?”
  • A child who experiences seizures finds himself having to explain what causes seizures and what to do about them to every new teacher.
  • A trans person is greeted with the wrong pronouns by a store clerk.
  • An autistic person is asked, “Why does my autistic child do X?”
  • The non-disabled adult sitting with the disabled adult is handed the check automatically by the waiter.
  • A woman joins a motorcycle repair forum, only to find surprise and disbelief that a woman can understand how engines work.
  • A Sikh is asked his opinion on Osama Bin Laden by a new acquaintance.

Notice the above? Any of the above may occur without any conscious awareness by the person doing them that what they are doing is likely offensive or hurtful. The person isn’t trying to hurt the victim, but the effect is just the same.

Being asked once a year or two if you speak English is hardly offensive to most people. But if you get asked this question every time you interact with the government, while others are not asked this question, you probably start to get annoyed and upset, especially if you don’t know any other language and have lived in an English speaking country your entire life (which the person can’t tell just by looking at you, regardless of your skin color). Why shouldn’t you know English? And who says that whites all speak English?

Being asked as an autistic adult, “Why does my autistic child do X?” is not an intent at offense most of the time, but rather sincere curiosity and concern for their child. But we’re not experts on your child, at least most of us aren’t.

Plenty of women don’t understand engines. But plenty of men don’t either (go read some of the motorcycle repair forums – and see the incredibly bad advice given). Yet people often make the mistake – often unintentionally – of seeing someone’s gender and assuming that they can now tell if that person knows engines or not.

Of course all of the above can also occur for sinister reasons. Someone might intentionally use the wrong pronouns for a trans person to show their moral disapproval. Others might not believe the child really has seizures so thinks they need to “test” the kid to see how knowledgable he is about them, so you can catch them in a lie. Another person might show their dislike for non-Christians by prodding a Sikh with questions about Bin Laden.

The key is all these things allow someone to still say, “Oh, I didn’t know!” You get the benefit of being nasty and hurtful without having to take responsibility for your actions. And of course the people doing it intentionally say they weren’t, as do the people that weren’t.

Add to that, most people, when confronted about a microagression, whether intentional or not, will respond poorly. They will turn the conversation around and see themselves as a victim of political correctness, of a slight etiquette misstep that the other person is taking way out of context. After all, they didn’t attack the person!

At the end of the day, it is this refusal to take responsibility that is most insulting. Someone truly acting in ignorance will take responsibility if they are a decent person. If they aren’t, if their ego is more important than the other person, if being right is more important than the other person, then they will not take responsibility. They’ll get upset at the person for “blowing it out of proportion” because, after all, they “didn’t mean to hurt you.”

Yet, often in life we face consequences for acts we don’t mean to do. I might forget to put a stamp on a job application I’m mailing and fail to get the job. I might leave dinner going too long in the stove and find it burnt. I might drive faster than I should in a moment of inattention and get a ticket (if I’m lucky to not cause an accident).

In addition, all of these behaviors, even when unintentional, are still hurtful. They all point out that we’re weird and don’t really belong. Being an outcast is not enjoyable. Sure, you don’t mean to “other” us by asking me about your autistic kid – but when that’s the only type of thing you want to know about my life, you don’t see me as a full person.

Now, I’m not saying that it’s bad to recognize differences. It’s not. Sometimes we need you to recognize our differences. Sometimes we want to share about our culture or life experience. Sometimes we do want to educate you. Sometimes we want to be treated in an appropriate way that is different from how you treat others.

And sometimes we want to be believed when we say, “Hey, this wasn’t accidental on this person’s part.” Sure, what they did might sound like it could be accidental, but the person relating the story likely has a lot more life experience dealing with how people interact with them. Yep, they might be wrong. So this shouldn’t replace, for instance, the court system’s process of examining evidence! But at the same time, part of stopping bullying involves stopping the intentional microagressions, while also educating others on the harm of microagressions.

And, just for reference, here’s some ways people could have responded in the situations I mentioned above:

  • A hispanic person is asked, in the US, “How can I help you?” If the person doesn’t seem to understand, then you should figure out what language they speak or use (in the case of a deaf person). Even better, you have obvious and clear ways for people to indicate their preferences (a government office with multiple windows might have a sign indicating what languages the clerk speaks, and invites people who don’t speak English to use that line).
  • A school makes it standard practice to share key student information with new teachers, while also providing an opportunity for students and parents to refresh and review the information that is given. Then, specific, relevant, questions are asked as needed, but the person who experiences seizures isn’t expected to answer the same question 10 times because there are 10 staff members.
  • A trans person is greeted by name by a store clerk, and if a mistake is made and the person says, “It’s not Ms, it’s Mr,” the clerk immediately corrects themself and says, “I’m so sorry sir” and then moves on using the right pronouns.
  • An autistic person is asked if they know of any good references for parents about parenting autistic kids, or other ways of getting that information.
  • When two or more adults are sitting at a restaurant table sharing a check, the waiter asks how they want to handle the check.
  • A womanperson on a motorcycle repair forum has a chance to show her intelligence or ignorance when it comes to motorcycles before any judgement is made.
  • Someone seeing someone wear religious garb asks if there is any symbolism in the person’s clothing

Maybe those aren’t all the best ways of responding, but they are likely better than the first attempt. Sure, you might not know that some of these ways of interacting are tiresome and hurtful, so you’re going to make mistakes. Again, the mistake isn’t the horrible part – but being stubborn if confronted is. And doing it intentionally certainly is.

There’s also some ways people observing can help – and these can be the most valuable and useful, as it shows the person, “No, you are one of us! You are part of our group, not an ‘other’.” Here’s some examples, from the above:

  • A hispanic person is asked, in the US, “do you speak English?”. A friend observing this might respond by saying that it might be quicker to just ask something in English and see if he gets a puzzled response or not. Or “what would you do if he said he spoke Russian?”
  • A child who experiences seizures finds himself having to explain what causes seizures and what to do about them to every new teacher. Another teacher could preempt this if she knew the kid was going to transfer to another teacher, by making sure the teacher gets this information ahead of time. But I admit this is a harder one.
  • A trans person is greeted with the wrong pronouns by a store clerk. A friend corrects the clerk so the trans person doesn’t have to (hopefully the clerk takes the hint).
  • An autistic person is asked, “Why does my autistic child do X?” Again, this is a hard one – I’d love to hear how a friend should respond. Probably should work it out with each other as part of the things you learn about each other during friendship.
  • The non-disabled adult sitting with the disabled adult is handed the check automatically by the waitress. Depending on your snarkiness, you can either make a great show of handing the check to your friend or simply say, “Don’t you want to know if we want to split it or who should take the check?”
  • A woman joins a motorcycle repair forum, only to find surprise and disbelief that a woman can understand how engines work. Other men could talk about how plenty of men do dumb things or plenty of women know mechanics. Or could simply point out that it might be better to listen and evaluate what the person has to say without being a jerk.
  • A Sikh is asked his opinion on Osama Bin Laden by a new acquaintance. I think here a “Why are you asking this?” would probably be appropriate.

Again, I’m not sure this is always the right or best way to handle things. But a lot of times, someone in support who shows that they recognize you as a friend or part of the group can do a lot to combat the feelings of otherness that is created. One of the worst things a friend or someone observing this can do is to stay silent, even if they don’t know how to react. It’s frightening, and sometimes you’ll respond wrong. But at least you tried rather than silently allowed the hurt to be inflicted.

I’m curious on other people’s thoughts on the microagressions. How can they be handled? What can people do about them?

Why Self-deprecation is Ugly

Autistic people sometimes live a life where they are never good enough in the eyes of people important to them. Perhaps not “good enough” in the eyes of a parent, friends, classmates, or someone else’s eyes.

One response is to internalize this feeling of inadequacy. You believe yourself to be inadequate. So you express that. I understand that, I lived through it.

This is horrible for a person to feel. And sometimes there aren’t a lot of good ways to deal with this miserable life. You may discover self-deprecation. If you’re going to fail in other people’s eyes, you might as well be the person to say you’re inadequate – and beat anyone else to, getting a little bit of control. You can’t succeed, but you can take the words from others.

Of course this is not a positive thing. But understandable.

Where it becomes a problem is when it continues when the person can succeed. It then becomes not an expression of depression but rather of manipulation.

Yes, manipulation.

Once someone can succeed, the self-deprecation is now a manipulation. It can be used to get people to look at the person, give them attention, and even get others to give compliments.

It sometimes gets seen as humility (sometimes by the person acting in the self-deprecating way, sometimes by others). But it’s not humility. Humility doesn’t seek to gain control, while self-deprecation does. Humility allows someone to succeed and recognize their own success – self-deprecation actually draws attention to the success, by drawing other people into acknowledging the success. Humility doesn’t seek recognition, but self-deprecation attempts to pull out recognition from others. Humility is good. Self-deprecation is not (although sometimes it’s an understandable symptom of depression).

Self-deprecation attempts to control criticism. It seeks to get others to either sympathize with him (and tell him his being, attributes, or work are actually even better than they really are) or to see that he knows what is wrong and really is smart and able, just didn’t quite pull it off this time. Most people, being polite, will appear to sympathize outwardly.

Humility doesn’t control criticism. If someone says your work or attribute or being sucks, you analyze the truth of the statement and move past that. It allows for someone to point out a flaw you don’t know about. It also allows you to dismiss their opinion, if it isn’t well founded. Not all criticism is accurate, after all.

Simultaneously, self-deprecation not only controls criticism, but removes the need to act in it’s presence. You’ve already said it or you suck. So, what does the other person expect? You suck. You know that. You told them! If you suck, how can anyone expect you to do better? You don’t have to act, if you employ this strategy of manipulation.

Again, I think most people that practice this manipulation are doing it because of pain and hurt. They’ve probably had a horrible past. But, at the same time, it’s not always a good way of interacting with others and can become manipulative and ugly.

For myself, it took me quite some time before I could accept that a compliment was not just setting me up for abuse or humiliation. So I’d question a compliment, rather than accept it. Even when I was able to succeed, I’d deprecate. It was a bit of a habit and a bit of coping. But it wasn’t humble. It was still manipulative, even if it was developed as a strategy to cope with depression and horrible life circumstances. I needed to learn what was wrong with the self-deprecation, learn why I did it, and learn that, no, I don’t need to live in that way. I could be good at something. And someone else could tell me so – without me needing to set the stage about how horrible I was first. I could also be non-perfect, without the need to avoid all criticism by getting out in front of someone else’s criticism. I could just accept myself as I am (and recognize legitimate areas of improvement). And I could be wrong. That’s okay too.

When I continued that behavior past the places where I was being abused, and into places where I had plenty of positive feedback from others, it became manipulative. It could easily become ugly – a way to get people to do what I want them to do, while freeing myself from potential criticism. Not good. And it’s okay to not want someone to manipulate you in this way – that’s not abuse, it’s not wrong, and it’s okay to call out this behavior when you see it. It is bad behavior, even if it had a good reason. Just accepting it doesn’t help – it doesn’t help if it truly is a result of ongoing abuse (it instead facilitates the abuse – better to find the cause and get it taken care of!). Nor does it help if those things are long past and this is now just plain manipulation.

I’m definitely learning to live – and that a compliment may be just that. I may have done good! That part of my personality really might be good! And, yes, that criticism may even be valid (or not!). That’s all good. As I learn this, I learn that people’s opinions of me, while worth evaluating, are not what is important. Being as decent of a person as you can is important. Yes, you do need some positive input from other people. And too many autistics don’t get that. But at the same time, once that’s there, it’s freeing to recognize it and then let go of the need that is now met and to give up that manipulation of others.

What is Wrong with the “Is FC Real?” Debate

It’s asking the wrong questions. It’s that simple.

The question that it’s asking, typically, is, “Are all instances of FC (Facilitated Communication) true communication, or are they all bogus?” Typically, at this point, some FC detractor will pull out some study about how it demonstrated there was no communication from the FC user, but rather from the facilitator.

But let’s back up. What is FC? FC is a form of AAC (Augmentative and Assistive Communication) that uses the touch of another person or the support of a wrist by another person while the communicator (who typically does not talk) types or writes something. The controversy arises because someone holding the wrist of another person can obviously move that wrist, possibly typing their message yet claiming that it is the words of the person who doesn’t talk.

There’s several things I’ve seen people try to say about FC.

First, many people say, “FC shouldn’t be used. There are lots of computer programs and ways to communicate other than FC. One of them should be used.” I agree, when this is possible. FC immediately draws a user into a controversy, and his words are immediately suspect in the eyes of many. For that reason alone, it’s good to have a way that is less controversial to communicate. But the next question is whether or not such a way exists for the communicator. There’s a bit of an assumption that anyone can type/point/whatever without physical assistance when it’s assumed other means might exist. Not everyone is the same, and even though someone’s differences might be incomprehensible to you, it doesn’t mean those differences aren’t real. But, yes, when possible, other means should be used. I believe the FC community agrees with this and there is no controversy here.

Next, some people say, “FC is bogus because person X or study Y showed it to be.” Of course one person or one study just says things about one person or one study’s population, not necessarily everyone. Yes, some studies claim FC is false on the basis of studying some people who participated. There are critiques on some of these studies, but even if they do show what they claim to, it’s still possible that someone, somewhere is truly communicating with FC. I find it amazing that it’s okay to dismiss the potential for communication in someone else – and take away their voice – on the basis that someone else (or a lot of someone elses) was not truly communicating their own words.

The third thing is that there is an assumption about the intelligence and ability of people who have certain patterns of disability. Some people simply find it hard to believe someone who doesn’t talk, who needs full-time assistance, who doesn’t type independently, etc, could possibly have intelligence or things to say. It is surprising, which is why I think FC has received so much attention over the years, from both supporters and detractors.

Now, I know some FC is real. I can say this with certainty, because I believe it should take extraordinary evidence to question someone’s own self-reports. And there have been self-reports by former (and current) FC users that make it clear it is real communication. I’m not talking self-reports using FC to validate FC, but rather self-reports from people who now or also communicate through other means. If someone tells me, using speech, that their FC is real communication, I’m going to believe it unless I have extraordinary evidence to the contrary. Some names to look up (just two now, but there are more): Lucy Blackman, who now types independently and talks about how when she used FC, it really was communication; Sharisa Kochmeister also now types independently and supports FC.

I also think the “Is FC real?” debate, in addition to ignoring the voices of those who clearly know if it can be true communication and today communicate without any controversy, also ignores the real problem with communication and autistic people: influence. How many autistic people can truly communicate independently? Do you say the same thing with your mom in your room that you might say to a close friend (with mom nowhere nearby)? Now, imagine that you are always, in public, with a certain person. And imagine that this person is an abuser. What’s the chance you’re going to report abuse? Pretty much zero – you’re not going to do that in the presence of the abuser. That’s influence. Let’s go further and say that the only reason you don’t live in an institution is because one particular person is your support person. Are you going to say anything bad about that person, even when they aren’t around?

In addition to well-publicized apparently false allegation of abuse communicated with FC, there have also been real allegations – substantiated by FC and other evidence. It’s scary to me that abuse allegations by an FC user are now automatically dismissed (and also that unsubstantiated equates to false allegations in many people’s minds – that’s terrifying as well).

Influence, whether it’s someone moving your wrist or someone preventing you from speaking about abuse is influence. It can be done even without the person in the same physical space. Yet, this type of influence – which is exceptionally common for autistic people (too many of us do not have support systems that include enough people to continue to have support if one person left) – is pretty much completely ignored if the person types or talks “independently.” Yet we’re talking about things like reporting abuse. People need to be able to independently communicate. But the debate on FC has made us believe that “independent” communication can exist for someone who cannot truly communicate freely, due to dependence on or presence of another person.

It also goes the other way. I find I can express myself much more clearly and strongly with certain people around. So it’s not just a matter of getting us alone. It’s actually complicated.

We need to think a bit more broadly in this debate. It’s not black-and-white, no matter how nice it would be if it was. Sometimes, I might not know if someone is communicating independently using FC. That’s okay – particularly when the absence of that communication would have me listening to the person facilitating to represent the communicator anyhow! But I feel it can be an even worse error to immediately discount someone’s ability to communicate, when any possibility exists that they really are communicating. I also think we need to think long and hard about influence – and not just physical manipulation, but the emotional and social influence of, in particular, caregivers on autistic people. And we need to remember not everyone shares our abilities or situation.

I still hope for the day when every autistic person has ways to communicate with minimal influence (nobody in society communicates with no influence). That’s what we need to focus on.