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.

Marriage Equality for Autistic Folk

Today, the US Supreme Court is deciding on whether or not gays have a right to get married. I’m embarrassed that this isn’t self-evident to a country that claims to be based on the idea that there are fundamental freedoms that all people have intrinsically, just for being human. Of course this is hardly the first time that we’ve had problems understanding that.

Of course gays aren’t the only people that have trouble with society and society’s views on marriage.

Autistics are typically viewed by people as uninterested in others (so no need to worry about marriage or dating), non-sexual beings. Heck, there are several sexual orientations in many people’s eyes – straight, gay, bi, disabled. Of course some more progressive people realize physically disabled people (or, rather, some physically disabled people) might be gay, straight, or bi. But mentally disabled people…well, that’s just sick to think of sex.

And of course people can’t think of marriage without thinking of sex.

I have news for people: autistic people like sex! Sure, some of us don’t want to have sex with anyone (just like some non-autistic people don’t want to have sex). But plenty of us do want to have sex. Our sexual desires are no different than any other group. We have people into strange stuff and “normal” stuff and no stuff. Go figure.

I have other news, though: it’s not just sex. I love having intimate physical times with my wife (don’t worry, I’m not going to go TMI) – but that’s a special case for me. I never really desired that with anyone else. You see, the emotional connection I have for my wife brings a level of enjoyment and excitement to the bedroom that nobody else could bring. I suspect plenty of non-autistic people would say the same thing – that there is a component to intimacy that isn’t about physical sex.

Autistic people desire connections with others, too. We don’t want to be lonely (we may want to be alone sometimes, but that’s different from being lonely). Being lonely sucks. Before I met my wife, I still had a need to be with people – I had (and have) deep friendships with people that understand and know me. These friendships aren’t romantic or intimate, like my relationship with my wife, but they are deep and contain a form of love. These relationships give meaning to my life.

Too often, it’s assumed that we don’t want that. We do. We might not want what looks like a typical relationship or friendship, but that doesn’t mean we don’t want a relationship or friendship at all.

This is true not just for those of us adults who can tell you about it. It’s true from the beginning of my memories. I remember before I spoke how I connected and desired the presence of certain people, how I wanted a connection to humanity. That spark isn’t missing from us! Even if we don’t always go the right way about it.

But in addition to being seen as people who aren’t sexual, don’t want/need a relationship, and don’t seek connections with others, there are other problems. We have problems with money and transportation. We have barriers when it comes to group homes and institutions (I’ll note that many of which are run by religious organizations who can legally prohibit same-sex relationships – and nobody, including every single autistic advocacy organization I know of, seems to care). Competency and our own desires are questioned. We have a lot of problems.

Then there is just the practical. How does someone different find someone else in the world? It’s not easy. It’s a wonderful thing when an autistic person finds someone who connects to their soul and heart – but it happens far too infrequently. It’s a huge issue in the lives of many autistic adults, yet very, very few of us had any real education on relationships other than “don’t touch people inappropriately” (or, sadly, “don’t touch people sexually at all”). This one huge area of determining happiness is completely ignored.

It’s funny – social skills are a huge concern to people when they see us and educate us. But what they mean by social skills typically aren’t the same things that we might desire. For instance, what’s the first social skill example used on a sample IEP site? It’s simple “will raise their hand and wait to be called on before talking aloud in group settings 4/5 opportunities to do so.” Sure, this might be important (or not – I don’t know what the last time I raised my hand for permission to speak, but it was quite some time ago), but it is more about meeting other people’s needs than meeting my own.

We need to get past the “don’t touch girls” type of social training. And certainly we need to get past the “don’t make the staff’s job hard” type of training. We need to recognize the desire people have for connections. Yes, I realize everyone is different and that not everyone wants a spouse. That’s fine. But nobody wants to be lonely.

Some Thoughts about Steven Simpson’s Murderer’s Sentences

Steven Simpson was an autistic, gay man brutally burned to death at a party (his birthday party). For some background, see this Huffington Post, this NineMSN, or this Daily Mail article.

He wasn’t murdered. No, he just had anti-gay hate messages sprawled on his stomach, face, and arm. He then had his groin set on fire. Oh, that didn’t kill the man. No, he survived in what I can only imagine being the worst possible pain until the next day, when he died at the hospital. The person who did this act didn’t try to put out the fire (according to the Daily Mail), but instead ran away. In fact, nobody tried to put the fire out until a neighbor – not at this party – intervened. Then the murderer tried to say that the man lit himself on fire.

Again, from the Daily Mail:

Passing sentence, Judge Roger Keen told Sheard that the evening had involved ‘good-natured horseplay’ but that putting a flame to a man doused in flammable fluid was ‘a highly dangerous act’.

No, homophobic insults and trying to humiliate a vulnerable person is not “good natured horseplay.” Certainly lighting a man’s groin on fire goes beyond “dangerous act.”

The murderer received 3.5 years for manslaughter.

Let me help out judges and prosecutors everywhere by giving some definitions and examples:

Prank or “Good-Natured Horseplay”

  • Something that the person it is done to will laugh with you about.
  • Typically does not involve having racist, bigoted, or homophobic statements intended to humiliate you.
  • Does not involve inflicting intentional great pain
  • Is reciprocal – you might prank me as a friend, and I might pull a prank of similar magnitude on you later
  • Done by friends
  • If it goes wrong, people stick around and help. There is deep concern when this happens.
  • Oh, pranks are funny, not hate-fueled.

Murder

  • Might involve fire
  • Murderer typically does not want to face consequences
  • Persons committing it do not provide medical help to the victim
  • Sometimes fueled by hate, bigotry, and homophobia

I’d add that anyone that can hear someone who must have been in the pain Steven was in screaming and crying for help and then turn their back and leave…well, that’s not good-natured fun. That is also, IMHO, murder.

I am glad a neighbor showed Steven some humanity and did his best to help, even to the point of receiving his own burns. That’s what anyone should be expected to do, but when it mattered only Sean Banner did it. The murderers (referred to as pranksters by the defense attorney) didn’t help and didn’t care about the human they tortured and killed.

My prayers are with the family of Steven, who lost someone they loved and haven’t seen justice. I can’t imagine what that is like.

The Awareness I Want to See

I want to see us move on from the past and move into “I didn’t mourn for you.” To me, that will be true autism awareness.

I’ve heard the argument that people need to mourn when they find out their child is autistic. I get it. I even get the argument about how they mourn for their own lost dreams when they realize they child they have is not the child they though they have.

But, you know what? We don’t have to have mourning at all.

I look at the LGBT community. 20 years ago, it would be pretty darn common for a parent to be sad, mourn, maybe even be angry when their child said, “Mom, dad, I’m gay.” The best, most pro-gay parent groups at the time talked about the need to give yourself (as a parent) time to adjust to who your child is, and that it’s okay to feel sadness. That it’s a real, authentic feeling.

Nobody doubts the sincerity of their feelings. But that didn’t make it right. While I applaud people who’s views about homosexuality have changed after a family member came out – and am genuinely glad they now accept their child – the reality is that before their views changed, they saw homosexuality in a negative way, not a neutral and certainly not a positive way. It took something very powerful – the love for their child – to help them overcome their own prejudice.

Now, I’m not saying these people are horrible people for having once held prejudiced views. They have changed, after all. And that’s admirable. But at the same time, wouldn’t it be even better to not have been prejudiced in the first place? We can’t necessarily help our upbringing and our ignorance, and, yes, how we respond when confronted with new information is what truly matters. But at the same time, do you not think a gay child (who hasn’t yet come out) is going to feel more comfortable coming out in a family where the parents have already shown acceptance of gay people rather than in one that it will take a process for the parents to grapple with their past prejudice? Of course it’s better to have the acceptance early, not just late.

Likewise, it’s possible for a parent to not be crushed when they find out their child has an autism diagnosis. It’s possible for them to say, “This is part of who my child is” and move on, without tears and pain and fear. And I think focusing so much on the need for some to mourn (which, obviously, is legitimate) keeps us from seeing what the world could look like. The world could be a place where “your child is autistic” doesn’t sound like a death sentence or a painful disease.

As an autistic adult who likes who he is, I’ve found I now have to add a disclaimer: Yes, of course, I’m not saying you should like seizures, aggression, pain, or anything else like that. But of course those things aren’t autism either. And before you make assumptions about me and my life, disabilities I do or don’t have, I challenge you to consider your assumptions. I’m not saying I’m just like your kid, but at the same time, don’t expect me to be happy when you say, “but if you were like my kid, you’d hate autism.”

I’m just wanting “your child has autism” to be seen as what it is: another insight into the makeup of your child. Alone, that statement doesn’t tell you much about the child. It doesn’t tell you if they will have an easy or hard life, if she’ll excel in academics or her career, if she’ll get married or have kids, or even if your family will be able to do A, B, or C – whatever A, B, and C are. It’s possible to not go through months of mourning for that child you thought you had.

Now, maybe you need to go through that. That’s fine, and it’s certainly better to go through it and come out the other side with a positive view of autism than for you to simply hold onto that view. But wouldn’t it be nice to just skip the mourning completely, and continue to celebrate the child you already have? That’s the vision I have. A vision where no autistic child has the experience of bringing devastation to their parents just for having a name for the type of person they are.

That’s the world I want to live in. That is autism awareness and acceptance.

No Guys, That’s Not How the World Works

I was reading a something written by an autistic guy who was complaining that his girlfriend (who he had just insulted) was upset at him. Someone responded that you have to be careful about what you say around women because they are “very emotional.”

Uh, no. You insult people, they get upset. That’s how it works. It’s nothing about being “very emotional” (heck, how many guys get into fights over something stupid because they were drunk and experienced the emotion of anger – which is just as much of an emotion as sadness). And saying crap like “women are very emotional” isn’t likely to get a guy a date, either. Anytime you hear that – no matter how successful that person seems to be with women, he’s not. You need to find someone better for advice. Really.

I’m no expert on relationships. I’ve had one serious romantic relationship in my life (that said, it’s a successful one!). But I know autistic people can be good partners in a relationship. I know too that we can be assholes, just like anyone else can. Plenty of non-autistic people abuse and manipulate people, but non-autistics don’t have the exclusive license to that either.

So I’m writing this to the generic person (sadly, probably a guy) who feels entitled to have a girlfriend at the very same time he mistreats her.

So, you want a girlfriend? I understand that. I’ll give you a hint: you probably won’t have a good relationship if you don’t treat her at least as good – preferably better – than you want her to treat you. But the minute you start tracking how she’s treating you and how you’re treating her, and making sure it all balances out…well, you’re wanting a business transaction. That isn’t a relationship.

There is this thing called “love”. It’s real, and, yes, even autistics experience it. Yes, even autistics.

Let me explain what love isn’t. Love is not:

  • Doing something to get something
  • A way to get sex
  • A way to be popular
  • A way to get a personal servant
  • A negotiation of any type

Love is not selfish. If I get my wife flowers because I want something from my wife, and I think I can manipulate her with flowers, that’s not love. That’s me thinking about what is best for me, using her as a tool to get it. Love would be giving her flowers because I want to see her happy. Period. Not because I somehow got something from it. You see, the minute I start thinking, “I can get (something I want) if I (do something to manipulate her),” I’m not loving her. I’m trying to get something for me.

Selfishness is not an autistic trait. Sure, there are plenty of selfish autistics (and selfish NTs). But it’s no more an autistic trait than it is an NT trait. And it’s disgusting when I hear people try to make it into an autistic trait as justification for being an ass. It’s not and you confirm to the world that you’re an ass if you try.

Let me go back to what love is. You aren’t ready for a relationship if you don’t have some love for another person already. I’m not talking romantic attraction – I’m talking basic friendship. Sure, I might not get my friends flowers, but I will help them out without expecting anything in return. Because they are my friends. Not because they will return the favor (they will, but that’s besides the point), but because of this bond of friendship – this form of love.

I’ve seen too many guys – not just autistic guys – think that relationships are a way of manipulating someone to get something you want (typically sex or the status of having a girlfriend). Then they are surprised when most women turn them down. You see, women (and people in general) generally can figure out when someone is trying to manipulate them. Sure, we all get tricked sometimes by a particularly skilled evil person – but we still figure out much of the time when we’re being manipulated. And it sucks to be manipulated. Nobody likes that or people who do that to them.

It’s not just giving, either. Sometimes it’s changing. It’s not being or doing something, or maybe it’s being inconvenienced. Not because you’ll get “paid back” for it later, but simply because you care about the other person and want them happy. Yes, they’ll do the same for you, but you can’t dictate the terms and it will not come in a form that you control.

(I’ll add that love is why people that love someone are willing to hear them say “no” and to back off when that happens – they care about the other person’s feelings, not just how that person makes “me” feel – love, again, isn’t selfish, but is concerned about what the other person wants)

So, if you can’t say, “I really care about this person,” and not add any “but” after that sentence, you probably don’t love them. And you shouldn’t manipulate them into believing you do.

I will tell you something, though: when you do feel that way for someone, and they feel the same way for you, it’s an absolutely wonderful thing. In part, I think that’s because it’s given freely – it’s not given to get. That’s why my wife giving me a special meal means so much more than the McDonald’s worker giving me my food. The McDonald’s worker is obligated to do that – I gave him money, he gives me product. There’s no connection there. It is a business deal. But not so with my wife. If she cooked me something special, it was because she wanted to see me happy. Knowing that your happiness is what someone else desires…well, that’s a wonderful, wonderful, wonderful feeling. I can’t imagine cheapening that by trying to make it a business deal and trying to count how many nice things I do for her in exchange for the nice things she does for me.

Certainly, it is a two way street, and no relationship or friendship can be successful if only one person is willing to show love and concern for the the other. But there is no general ledger when it comes to love and you don’t get to buy certain items for your troubles. You don’t record what you give and what you get, to make sure you get your money’s worth. It isn’t like that at all.

And this has nothing to do with someone being “very emotional.” It has everything to do with not wanting to be a piece of meat traded for some other goods.