Too Scared to do What I Want

Today, I something pretty huge happened. You see, I’m traveling in Europe and attending a conference.  At the conference, another attendee offered to take a group of people on a walking tour of this city (they know the city well) the day after the conference – just “come up to me after the session and we can exchange contact information” if you want to go.

I started shaking. I really wanted to go – it sounds like a really fun way of seeing the city, and doing it with someone who actually knows the city is even more exciting. It’ll give me a chance to see things and talk to some of the attendees at the conference who, no doubt, are interested in many of the same things I am interested in. And it’s hard to meet up with people.

But I was shaking.

Would I recognize this person in 10 minutes? Almost certainly, no.

Would I be able to go up to them and tell them I’m interested? Again, no way.

But I really wanted to.

Yet I was terrified.

When you’re an autistic kid, particularly if you don’t fit into the clique of other boys at all, life is pretty horrifying – and that leaves scars. It leaves a scar that makes it hard to go up to people and say, “Yes, I WANT SOMETHING!”  You learn that your interests are wrong, that you aren’t cool enough to hang around with other people, and, if by some miracle they let you come along, that’s only because they plan on doing something awful to you away from the prying eyes of an adult. Maybe they’ll steal your money. Or hit you with something. Or violate your body. Or hide, waiting for you to show up and find nobody there, while they laugh at the dumb boy. Or leave you somewhere. Or tell you that they are doing something illegal – and convince you to join in it, only to find out it’s a setup for which you take the blame because the “good kids” turn you in.  But whatever happens isn’t going to be that something you want.

But I’m nearly 40. These things won’t happen. The people making this offer want people like me to come, or they wouldn’t have offered. I know all of this.

But I’m shaking. I’m terrified.

And I’m not going to recognize this person after the session anyhow.  I can’t just go around to 300 attendees and say “Hey, are you the person that talked about X?” And I certainly can’t ask anyone to point them out to me – then I have to overcome this twice.

It makes you want to cry. Why can’t I have the smallest amount of confidence?

Because I’m terrified. It’s not logical, it’s deep in the heart.

This time, the person making the offer was distinctive enough looking that somehow I was able to find them – they look (to me) just like their partner (same gender, same age, same basic body type, same hair color), so I have a 50/50 shot. And I risked it.

I was shaking.

What kept coming to me was a quote, from a different context, about activism: “Speak your mind–even when your voice shakes.”

I can do that when someone else needs me to. Mess with my family and you’ll find that out – there is nobody I can’t go up to and set straight when they’ve wronged someone I love. Or when someone I love just would be happy if I did.

But asking for something about me–that’s different. That’s hard. And it’s not something I need, I’m not advocating for rights. I am just saying, “Yes, Joel wants something.” But isn’t this, too, advocacy? Aren’t I a person worthy of happiness and joy, and needing someone to speak?

I was terrified.

Somehow, when I found that person.  And I gently tried–and failed to get their attention.  I wasn’t positive of their name, so I didn’t want to use the name, but I couldn’t get their attention either.

I was shaking.

I just about gave up.

Someone else saw me and said to the person I was trying to talk to, “Hey, someone’s trying to get your attention!”

More shaking. More terror.

But I did it. I spoke, with my shaking voice. “Are you the person organizing the walking tour?”

Terror.

Shaking.

“Yes, are you wanting to go?”

Terror.

Shaking.

But I somehow found the voice to say yes.

Tomorrow, when I meet up for the tour, will be another bit of stress and terror. I have to find someone tomorrow, in a building I’ve never been to before (another thing that terrifies me).  I’m terrified.

But I’m also excited. And proud. And happy. Filled with anticipation of doing something I want to doBecause I want to do it. Not for someone else. Not pretending I am not interested, lest I be humiliated by finding out I wasn’t really allowed to do this. No, it’s wonderful!

So, tomorrow, that’s what I’m doing.

And I’m terrified.

And shaking.

But the shaking is just as much excitement as it is terror. And probably the cold temperature in this room.

Accusations of Abuse, Guardianship, and Community Response

Recently, the story of Sharisa Joy Kochmeister has been the focus of much attention in the advocacy community.  And I’ve stayed silent on it, because, frankly, I don’t know the facts of the situation.  But I can’t keep doing that.

My understanding of the background of this – which is open to any and all corrections people may have – is:

  • Sharisa is a 30-something adult
  • From a Denver Post opinion piece (not an investigative article), “The ordeal began in March when her father was accused of abuse when he was seen in a Denver hospital using his finger to clear his daughter’s throat after she had vomited. She kicked him. He pushed her and it was caught on video.”
  • The father was accused of Manchausen by Proxy. This basically means that Mr. Kochmeister was suspected of making Sharisa ill.
  • While the father has not been charged with a crime, the county where Sharisa lives has kept Sharisa’s parents (and indeed most other people) from visiting her.
  • Sharisa is unable to communicate without her father or sister being physically present and possibly facilitating (through actions such as holding a communication device).

Most of the comments, petitions, and advocacy pieces I’ve seen publicly start from the assumption that the abuse allegations are false, for several reasons:

  • People personally know the parents and think they are good people.
  • That accusations of Munchausen by Proxy are often wrong (For instance, in Where is Sharisa Joy Kochmeister, there is a section on false allegations of Munchausen by Proxy with the leading sentence in bold saying, ”Beware the accusation of Munchausen by proxy”).
  • That criminal charges have not been filed against the father.

I’m uneasy with this logic, and I want to explain why. So let me go through each of these three points.

Her Parents are Good People

Perhaps.  I don’t know them, and I’ve known some people I thought were wonderful that turned out to have some really awful, evil parts of themselves.  For instance, one of my best friends in college was recently found guilty of molesting his daughters.  I never would have predicted that, but the evidence was extremely strong and convincing, and I’m glad his daughters are no longer in his care (he is currently serving a long prison sentence).

So I can’t comment on whether or not the parents are good people. I will say that I’m concerned and saddened that any disabled person can communicate only through a very small number of people (or, in the worst case, one).  I am concerned that Sharisa is unable to communicate through anyone but her father, for reasons I’ve written about in general terms elsewhere – how do you report abuse if your abuser is always there when you communicate?

I’m not dismissing her ability to communicate.  But I know that influence, particularly in abuse, and particularly when it’s done by someone who has the potential to do great harm in retaliation, is a powerful thing. And I also know that the vast majority of abuse victims, when asked why they didn’t report that abuse, say the same two things: either they felt they wouldn’t be believed (because the abuser is respected or seen as a wonderful person) or that the abuser can make things worse for them.  We’ve seen both with Cosby’s accusers, who felt they wouldn’t be believed and that Cosby could retaliate and essentially keep them from their dreams in modeling or show business. If this is hard for women who are, in some cases, thousands of miles away from their abuser, imagine what it’s like if that separation isn’t possible.  It’s also not just abuse – imagine other decisions, such as becoming sexually active, deciding whether or not to seek an abortion, or discussing treatment options for STDs – would you want to have those conversations with a parent in the room?  Unless you have a particularly unusual relationship with your parents, probably not.  We are all influenced by people we are around, and that influences what we do and don’t say. It’s one of the reasons it has taken me so long to write this – but it has become too important not to.

When my wife was hospitalized a couple years ago, I remember how I was asked to leave the room for a few minutes, being told they needed room to transfer my wife into the bed. I asked her they did while I was gone, and she said that, yes, they did transfer her to the bed, but that they also asked her if her relationship with me was good and if she wanted me to be there – she was kind of surprised by the questions (I don’t think there was any suspicion of abuse by me, I believe this was asked to nearly all patients). I’m not offended by that in the least – for some abuse victims, the only time they have the chance to be protected from their abuser may be when they are hospitalized, and I thought it was one of the excellent things the hospital does – if it gives just one abuse victim the courage to speak, it is an awesome way of doing business. It is absolutely something a hospital should do. Likewise, it’s important for abuse victims to have means of communicating that don’t involve their abuser’s presence or (real or imagined) control.

Accusations of Abuse are Often False

This simply isn’t true, but even if it is, it does not mean that real abuse doesn’t exist. Too often we hear about children (I’m not implying Sharisa is a child, but most of the time we hear about state-investigated abuse, it is regarding children) that were inadequately protected by the state after abuse allegations were made.

There are cases where Munchausen by Proxy is real – we should not dismiss this as merely claims that the evil state makes against parents of disabled kids. There is evidence that it may be over-diagnosed in cases where the caregiver is not the cause of the illness, and there is a real illness, albeit likely a hard to treat one.

But, there are also real instances where people are harmed by fictitious disorders imposed on them.  According to the Cleveland Clinic, approximately 1,000 cases of reported child abuse per year are related to this.

It is irresponsible for advocates to say that abuse did not occur when they do not have the full evidence. Abuse can happen to anyone, and abusers come from all social strata, all races, all sexes, etc.  It is not uncommon that abusers are well regarded and seen as “the least likely person” to abuse another. So all allegations of abuse must be taken seriously.  In fact, this is something the FC (Facilitated Communication) community has been stressing – while there was controversy regarding apparently false reports of abuse by facilitated communication users, there were also real cases of abuse that were investigated and found to be true, backed up with evidence in addition to the victim’s own words. Allegations of abuse must be investigated, and anyone that says otherwise is not an advocate for vulnerable people.

SOME PEOPLE USING FACILITATED COMMUNICATION HAVE MADE ALLEGATIONS OF SEXUAL ABUSE. SOME HAVE BEEN SUBSTANTIATED.

Some individuals have made allegations of abuse, but there is no evidence that the numbers of allegations by individuals using facilitation is proportionally different than the numbers of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 case in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash, 1993). Cases can lead to court convictions (Randall, 1993) and/or confessions by the accused. As with allegations made by the nondisabled population, some allegations may be unfounded and others simply impossible to prove.

The above is from Douglas Bilken, a leading FC proponent, writing “Facts about FC“.  Full citations are available in the link.

Regardless of your views on FC, allegations of false abuse don’t mean that real abuse doesn’t happen. For Munchausen by Proxy, in particular, what is important is whether or not incidents of more severe sickness are associated with the presence of the accused. So there is one question that is relevant here, but which the answer is not known: Have any of Sharisa’s medical conditions improved with the absence of her family? That alone doesn’t prove that abuse occurred, but it can help substantiate that the family is not the cause of any of the symptoms if all the symptoms continue despite the absence of family.

Likewise, I would think it inappropriate to say that Sharisa’s parents did abuse her – most of us (and everyone I’ve seen speaking publicly, with the exception of Sharisa’s family and Sharisa in the presence of her father) don’t have enough knowledge of the situation.  And we should see false allegations of this kind or terrible. Instead, I believe we should say what is logically required: We don’t know.

Criminal Charges have not been Filed Against Sharisa’s Father

This is true – there are no publicly known charges against Sharisa’s father, and is important for everyone to remember. That said, even charges don’t prove someone’s guilt – that’s why we have a trial system. But the American justice system is designed to only convict people when the judgement is that they are “guilty beyond reasonable doubt”.  Thus prosecution may not occur in all cases where a crime has been committed, particularly if a prosecutor believes it is unlikely a jury would agree “beyond a reasonable doubt” that a crime has occurred.

That said, there is a court process that determined Sharisa’s current placement and prevented Sharisa’s family from visiting freely.  We don’t have the information of what was presented at those hearings, so it is irresponsible for us to confuse lack of criminal charges with lack of a crime. Again, we simply don’t know. It could have been a huge miscarriage of justice against Sharisa and her family, but it also might have been justified in light of the evidence. We don’t know.

What Needs to be Done

So, we don’t know if abuse occurred or not. If it did, she should not be forced to live with her abuser. But her opinion still must be respected. People who are competent are allowed to make bad choices.

If it didn’t occur, where should she live? Where she wants to, clearly.

Unfortunately, the county believes she isn’t competent, thus someone else gets to make decisions like where she lives. On top of that, she is only making statements about where she wants to live in the physical presence of someone that may or may not have abused her. This makes it very hard for the county or anyone else that wants what is best for her, and doesn’t know if abuse occurred or not, to know what she truly wants.

I wish she could communicate without a family member in the room. If she could, and the family’s statements are correct about this not being a case of abuse, this issue would likely be resolved.  If she could communicate without a family member in the room, and was as courageous as I believe her to be,  she could affirm or deny abuse allegations. I have long believed that the primary goal for an autistic person’s communication should be that they are able to communicate in a variety of situations, with a variety of other people around, and using a variety of techniques. I stand by that.

But of course it’s not always possible. What is best is not always what happens. Clearly this is one of those cases, and someone’s ability to live where they want to is on the line. If you can’t communicate (which is what the county clearly believes), you can’t direct your life.

She was placed in a nursing home for a while. Nursing homes aren’t the right choice for anyone. I could write more on that, but other advocates have written plenty if you want to know why.

The county must expend the resources necessary to provide an environment as conducive as possible to communication. This means she needs the electronic devices she uses to communicate to be available and maintained. She needs to be assessed by experts who have a presumption of competence. She needs to be listened to when she communicates with ways other than language.

Last week, Disability Law Colorado (the P&A agency for Colorado) issued a statement that said that this is happening, and that the situation is more complex than media and many advocates have said it is. Of course they could be wrong, lying, or have a grudge against Sharisa or her parents.  But they also may be right.

That doesn’t mean we should just trust them and remain silent. We should demand that Sharisa can fully participate in the community and that the State ensures that everything possible is done to allow her to communicate.  The abuse allegations should continue to be investigated: in particular, has any part of Sharisa’s medical conditions shown improvement since her removal from her family? Was the video evidence so strong that it, by itself, justifies removal of Sharisa from her family?

There are lots of questions. And this is not a case of child abuse. When a crime is committed against an adult, and is not a sex crime, the public does generally have the right to know the details, so that we can make informed opinions.

Regardless, our advocacy must be first and foremost about Sharisa and her desires. Not the state’s. Not her parent’s. One side says that her communication desiring to be back at home is either not hers or is influenced by her father. The other side says she wants to be home. What Sharisa wants is what is important – not what her father wants, and certainly not what the county wants. And our advocacy should be focused on making sure she has as much of an opportunity to voice her views without a shadow of influence as possible. I fear that may not be possible, but I really don’t see any other way to get the resolution that Sharisa needs while her communication is being dismissed, as it is now. Lack of apparent influence is important (and I use the term in the general sense – the same thing would likely happen if a person speaking with their vocal cords only talked with someone that was considered a potential abuser in the room – it might even strengthen the case that abuse is occurring). I hope it’s possible and we need to advocate that she be given every opportunity to communicate this way. Starting with 24×7 availability of devices she’s used in the past to communicate and support people that are not making presumptions about her parents. Most of all, they must not presume that she is not competent.

Certainly if you have other evidence that the rest of the community does not have, absolutely use that in your decision making. But the rest of us need to be responsible and to use the evidence we have, realizing we don’t know several really critical pieces of this story. I am not saying her parents have done any wrong. Nor am I saying they haven’t. Because I don’t know, beyond saying we need Sharisa’s voice a lot more than mine in this discussion.

A Rule to Avoid Being a Creep

Autistic people like clear definitions and rules. Some things don’t have good rules.

One thing that doesn’t lend itself to creating fixed rules is any type of relationship – whether a friendship, a romance, a one-night-stand, or whatever other type of relationship. People are messy. We’re complex.

But, it’s pretty simple to not be a creep.

First let me tell you what doesn’t make someone a creep: sexual attraction. Even if that sexual attraction isn’t mutually felt by the object of your attraction.

That said, there are a couple parts of sexual attraction, and it’s sometimes useful to separate them out, as they are felt differently in different people. First, there’s the “WOW! She’s VERY attractive!” type of attraction that isn’t based on a relationship. Typically, acting on this is a bad idea – chances are, if it’s a random person walking down the street, that other person has practically nothing in common with you. She might be gay (and you aren’t a woman). Or want to marry someone who can share her love of sailing (and you hate water). Or might not see you as attractive. Or might have completely different life goals than you. Or might not want the same depth of a relationship as you want (she might want a one-night-stand while you want a marriage, for instance). Or any number of other things that would disqualify you as a potential partner in her eyes.

So, acting on phase one of the attraction generally isn’t going to be successful. Of course movies are sometimes based on phase one attraction working to build relationships. Perhaps that’s why they are entertaining and interesting. But movies aren’t real life. And, yes, I know in real life there are sometimes people for whom phase one attraction was the only reason they met and things have worked out mutually well. That’s fine too, but it’s not the typical circumstance.

Phase two attraction is a bit different – it’s not just based on looks, but rather it’s something that develops as you get to know a person. This doesn’t mean that phase one isn’t there (someone can be both attractive initially and attractive after you get to know them!), but it is in addition. I think a lot of long-term partners would describe this as making their love life better – the combination of phase one and phase two can be very powerful and exciting (far more than phase one alone for many people). Perhaps this is why 1/3 of men seeking prostitutes seem to desire an emotional relationship with the prostitute – they are looking for that phase two combined with feelings of mutuality. The emotional attraction that comes with phase two is not separate from the sexual attraction – it actually creates a powerful sexual attraction. In many people it is even deeper than the phase one sexual attraction.

This phase two attraction is a bit different. As you get to know people – and sometimes this can happen surprisingly quickly – a mutual emotional connection might be formed, which increases the sexual desire of both. I’d encourage people to look more for this than the phase one attraction, while not denying the existence of either.

So, that’s my thoughts on general principles. Back to the rule. We’ve already said that sexual attraction doesn’t make someone a creep.

What makes someone a creep is simple: Creeps don’t care if there is mutual agreement about how to proceed in a relationship. If it doesn’t exist, they think they can create it – and try to do so. It’s an emotional, psychological, and sometimes physical violation.

That’s where you can get in trouble with the phase one sexual attraction. It’s almost certainly not mutually felt. The phase two attraction might develop as you and the other person get to know each other, but there’s probably more chance it won’t. Just randomly acting on “She’s pretty, I want to get her in bed,” is likely to meet with failure after failure. That getting to know her thing – even if it doesn’t make good movies – is important.

And, then, as you get to know someone, you don’t proceed without mutual agreement. Occasionally you might “test the water” and see if the other person wants to go a bit further in the relationship, but, if not, you have one thing to do if you don’t want to be a creep: listen. If she sees you test the water, and then gently lets you down, respect that and enjoy what you have with her – friendship or whatever else. Don’t try to figure out what different tactic you can try. She knows you’re interested, she’ll initiate if she changes her mind (she probably won’t). And, yes, even in western society women can and do test the water too. So listen for that too.

Of course I can see people asking, how do you test the water? I can’t tell you that. Each relationship is different. There is no formula, no matter what the pickup artists out there may tell you. Everyone is different. Just respect her if she says she’s not interested. Don’t try a different tactic, respect her. And if you keep persisting, and thus become a creep, don’t be surprised when she gets a little more forceful in rebuking you. She’s not a bitch, nasty, or whatever else. You were a creep.

If you allow her to think you are happy having a friendship, while really you want her in bed, and you won’t be happy with it remaining a friendship without sex, you’re also being a creep. You don’t have mutual agreement about the relationship. She’s thinking, “Oh, a friend! That’s cool.” You’re thinking, “How much longer do I have to put up with pretending to be a friend before I can get her in bed?” You’re not in agreement. You’re setting her up and trying to deceive her to get what you want.

It’s risky to say what you want. And if what you want is good for you but not good for her, she’ll probably turn her down if you allow her to do so (not allowing this would also be creepy). But part of coming to an agreement on a relationship is to communicate and understand where the relationship is at. For me, I can’t do that the way neurotypicals do. The slight and subtle hints and body language doesn’t work. So I need to try to be honest. But there are few things harder in the world than being honest and vulnerable. So I think autistic relationships – particularly between two autistic people, but also likely between an autistic person and a particularly understanding non-autistic, can look a bit different. Some things might need to be more explicit. A challenge is trying to make those things clear while not destroying the mystery and spontaneity of a relationship. It takes someone who understands.

I wrote this mainly from the perspective of a man looking for a woman, but it applies in all sorts of other relationships too. Two people might agree to have quick sex without an emotional connection – or three people might want to do something sexual together. That might be unusual, but it’s not creepy so long as you mutually agree on where and what the relationship should be. And you can be a creep without even seeking sex but seeking whatever else instead. Forcing a friendship to progress can be creepy just as trying to get the girl in bed can be.

So, don’t be a creep. Respect and mutuality.

What Makes Life Hard?

I’ve learned something. What was hard for me at age 10 is not what was hard for me at age age 20 and was not what was hard for me at age 30.

At age 10, in the middle of the most difficult time of my life, I was bullied mercilessly. During the following decade, I was sexually abused, beaten, and humiliated. I was suicidal because of this. I don’t think it would be natural not to be.

At age 20, I was no longer bullied and I had actual, real friends! I had a place to belong. However, over the next ten years, I found three things difficult: building connections with other adults as they married and had kids; taking care of my personal needs (eating, etc); and dealing with my sensory issues. I spent much of my 20s learning, “OH! I don’t have to live with noise!”

In my 30s, I got married, but still have some disconnection with others. I’ve found the change between then and my 20s is that the sensory issues no longer are as huge in my life (thanks to understanding them and creating an environment which considers my needs) and my self-care is infinitely improved thanks to having a wonderful wife who makes sure I have food to eat (an amazing blessing). Where I find difficulty today is with work – as I’ve aged, I’ve gained more responsibility in my professional career – and that increases the social demands. There are different social expectations placed upon an entry-level programmer than are placed upon a senior-level team leader. I suspect it’s difficult for everyone, but it probably is easier if your team speaks your language (not English, but rather autistic vs. neurotypical).

What will be hard in my 40s? I have no idea. Life changes, and I’ve learned I am not great at predicting the future. I do know that since my 20s, my life has been a good one – I’ve been very fortunate to have good people surrounding me, good opportunities, and plenty of luck. That could change, or it could remain. Only time will tell.

Sometimes we need to take a step back from our worries about the future and concentrate on what we know about the now.

An Anniversary

Yesterday was my wife and I’s forth wedding anniversary. It’s been a wonderful time. We have one of many autistic marriages we know of – it’s clear we can form relationships just fine, thank you very much. I also think the basis of our marriage – honesty and communication – would help out a lot of other relationships among people who aren’t necessarily autistic.

I’m also thankful that in the USA, my federal government is recognizing same-sex marriages. That removes some of the taint of unequal treatment of others from my marriage, and thus makes my marriage more beautiful. Others are for the first time experiencing what straight couples have experienced for years – being treated like people.

Yet others still have trouble getting married – group homes deny people the ability to live together, people may live in states our countries that refuse to recognize gay marriage, or there may be any number of any reasons. My wife and I spent some time yesterday thinking of this.

We also spent some time thinking about the people who are single, either through choice or because they have not yet met their future spouse. There’s a ton of discrimination against single people – society assumes we should be married, even when we aren’t (and may or may not want to be). So we also remembered those people.

Our desire should be everyone’s desire: we want to see people happy (obviously without harming others). Whatever that ends up meaning.