I’m Sorry I Hurt Your Feelings

Really, I’m sorry I hurt your feelings.

Perhaps you are a parent, a therapist, a brother or sister, or somehow otherwise someone who has an autistic person in their life.

Perhaps I said something you didn’t like. Maybe I said I don’t want to see autistic people medically abused to solve “behaviors.” Maybe I said that ABA therapy is harmful. Maybe I said your anti-bullying system is cruel because it focuses on changing the bullied rather than the bully. Maybe I said that it’s okay for autistic people to have sex and masturbate. Maybe I said that doctors ignore our complaints. Maybe I had no sympathy for someone who murdered an autistic person, and said I don’t give a shit if they were stressed.

You see, no matter how nicely I try to say these things, how gently I try to explain that some things people do to autistics (even with good intentions) cause harm, it’s not these things that matter. Often, it’s the non-autistic’s feelings.

Even worse, for autistic people, these things aren’t about us wanting to defend our pride and ego, to have people have sympathy for us, or to justify whatever it is we’re currently doing. No, they are about our life.

You see, you might be upset because I dislike some random social skills training program.

Yet I had the shit kicked out of me for not being normal. I’ve literally run for my life. Even as an adult, I get stares, fingers pointed, and laughter directed at – certainly not with – me. So, yes, I’m sorry I said that social skills program was bad. But I’ve had decades of social skills training, decades of society trying to fix how I interact through negative reinforcement and repetition. I’d like to see people like myself able to live without fear of beatings and humiliation just because we forget some social rule.

You see, you might be upset because I say that the medical world sucks for autistic people, or that a drug is bad, because you’re doing that thing with someone you know.

Yet I go to the doctor and have my cries of agony ignored, because I’m probably just “anxious.” I’ve never had pain adequately treated by a doctor, with the exception of some dentistry (and only some). My cries of pain are ignored. Pretty much always. As are my sensory concerns. Ironically, I’m accused of not wanting treatment for autism, but when I ask for treatments that exist for sensory conditions that cause me pain, I’m ignored or told “everyone has that.” No, everyone does not have this pain when they go outside. You’re upset because I said the strong anti-psychotic you gave your kid might be a bad idea. Of course I’m part of the people doctors try to trick into receiving it against our will. So, ya, it’s a little personal for me.

You see, you might be upset because I lack empathy with the parent who drowned/choked/poisoned/stabbed/shot their autistic child — I don’t recognize how hard it is to be a parent.

Yet it’s not non-autistic parents that are being drowned and choked and poisoned, it’s autistic people. It’s people like me. So you aren’t going to get an apology from me when I have more empathy for the child that was a problem to dispose of, rather than having empathy for the adult who should seek a solution to their problems that doesn’t involve murder.

I realize #NotAllParents are awful to their kids. Plenty of therapists do good work. There are some wonderful doctors. I get that – how could I not? But I should not be forced to shut up about how me and my kind are being harmed just because people don’t like hearing certain things they might or might not do are harmful. All too often, we’re asked to remember the feelings of others, and how it might feel to have something they do be criticized – as if we don’t know what that feels like, having everything from the way we smile to the way we show joy to the interests we have to our self care skills criticized our entire life. We know what it feels like to be criticized. We also know what it feels like to be subjected to constant behavioral treatment, forced medication, inferior medical care, sub-standard education, and physical attack. We know what it feels like to be bullied every day of 13 years of school, with no day when you’re just left alone. We know what it feels like when the first thing talked about when another autistic person is murdered is how hard the caregiver’s life must have been.

In the meantime, I better remember to tell all the non-autistic people that they are okay and doing nothing wrong, whether or not they are. I can’t leave this unsaid, lest some person read criticism that wasn’t intended. Their feelings matter. That’s what this conversation is supposed to be about, after all.

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.

The Problem With Social Security

Note – this is US-centric by nature of discussing the US Social Security system..

I’m not going to say much here and I’m going to try to keep this accessible to people who aren’t finance experts (since I’m not either!), but I bet I know how to fix social security taxes – and it doesn’t have to deal with corporate tax return (the number of corporations paying basically no tax is alarming) or creating a means test for benefits.  As an aside, did you know that your family can make millions a year and you can still collect SSDI, the type of income someone who has worked “enough” receives if they become disabled? The same goes for social security retirement. You can! But you can’t own pretty much anything and collect SSI, which is what most long-term disabled people receive.  SSI is means tested, after all, while retirement and SSDI are not.

So you can be a millionare and collect SSDI or social security retirement, but if you have $2,000 in the bank account (less than 3 months “safety cushion” for someone making the typical $721  SSI payment). It should be noted that Vangaurd, in line with most financial planning companies, and a place that doesn’t probably have many clients on SSI, recommends a 3 to 6 month emergency fund: “In a nutshell, you should have at least 3 to 6 months’ worth of expenses—but the exact amount depends on a few variables.” I’m going to guess most of that $721 goes towards expenses for a typical SSI recipient (or tries to – one bad thing happening can easily cost more than an entire social security check, which is why people on low income need an emergency fund even more, because late fees and such end up making the amount owed even bigger!). So that means an SSI recipient should have between $2,163 and $4,326 in a rainy day fund – but of course they would be committing social security fraud if they did (nevermind the impossibility of saving on $721/month). If you’ve ever had a root canal (not covered by medicare typically!) and paid typical prices, you know what the problem here is.  But I digress…

Heck, to fix social security, we don’t even need to trim the military to the spending level of the next, say, 5 largest militaries (today we spend more than the next 8 largest militaries combined!)

No, it’s simpler.  Two minor tweaks to the law that would affect very few people.

First, get rid of the $118,500 (it goes up each year, just slightly) earned income cap on social security taxes. If you make $118,500 in earned income, you pay $7,254.00 in social security taxes.  That is 6.2%.  Your employer matches that.  If you have a part-time job you are raising a family of four on, as a single parent, and you make minimum wage for 30 hours a week ($7.25/hour, or $217.50 for your 30 hour week), you make $11,310 per year, and you pay $701.22 in social security tax.  That’s 6.2%.

But if you make $10,000,000/year in earned income, you pay $7,254.00 in taxes.  So you make 884 times the income of our 30-hour-a-week minimum wage earner (in other words, they seemingly would have to work 884 years to make what you make in one year), but only pay a bit more than 10 times the social security tax.  Their tax rate (remember, the minimum wage worker is taxed 6.2% on social security) is 0.07%.  With the vast majority of wealth in the nation owned by a very small group of people – who pay pretty much nothing in social security tax – after all, they have a lot of uses for that 6.2% – it is no surprise that there are predictions of the social security trust funds running out of money.

But it is worse than it sounds. I kept using a term, earned income, above.  Is there another kind? Of course. Among many types, it includes money made from betting on the stock market (this is one thing called “capital gains”). That’s not considered earned income, but it is income. So you do pay taxes on it. But one tax you don’t pay on it is social security tax.  That’s right, if instead of working to make the $10,000,000/year, our millionaire instead made money investing, he pays $0 in social security tax.  Yep, 0%.

So there you have it – the real story of why the social security system is flawed. The poorer you are, the more of your working income goes to social security – and if you are lucky enough to make enough money to live comfortable off of investment income, you don’t pay a cent.

As an aside, this isn’t a new concept. But it isn’t popular. One of the less-well-known Obama-care changes was that people making over $200,000 earned income (for individuals) have to pay a slightly higher tax rate to medicare than the minimum wage worker. So I guess that’s progress. But it also helped significantly to start to make medicare a sustainable program. Minimum wage workers (indeed, anyone with less than the $200,000 limit for individuals of earned income) pay 1.45% of their income to Medicare. High wage workers pay an extra .9% on any earned income above $200,000.  So for every $100,000 extra they make over $200,000, they pay $900 more in tax than before Obama-care. They still pay nothing for Medicare on income that isn’t earned (capital gains).

Stereotypes and Advocacy

I’m sick of many of us in advocacy simply stereotyping people who are not part of our particular movement. Stereotypes and assumptions prevent us from communicating. Too often, rather than listening to what someone who is not one of us says, we simply assume that they believe what other people with a certain trait believe.

Parents, professionals, and therapists deserve to be treated with respect. As all people do.

Sure, a lot of time the people doing horrible things to autistics are parents, professionals, and therapists. So they don’t get a free pass just because they had a kid or have a professional job.  But, at the same time, before we pronounce someone guilty, we probably should make sure they really are guilty – not with accusatory questions, but by sincerely listening.

We don’t want to be tone policed in advocacy circles. If I need to express something happening to my people that is harming them, I shouldn’t be silenced unless I can say things politely. I agree with this.

That said, if I can say them politely, I probably should. I should at least try a decent interaction with people, with an assumption that the person may be a potential ally, not an enemy, who simply doesn’t know any better, who is doing something a certain way for a reason that negates my concern, or simply doesn’t know any better – but agrees that autistic people (or whatever other group) need to be treated decently. If they prove themselves otherwise, fine, be an ass. But let’s wait until they prove it, rather than having us assume it. There may be nuance that I don’t know about unless I ask.

I’ve had this in my own advocacy. Sometimes I see something in the advocacy world that I don’t think is particularly effective advocacy – so I speak up and say so. I try to do so respectfully, sometimes I do, sometimes I fail. Like all of us. But more often then not, the response isn’t to read my words or listen to my thoughts, getting clarifications when something is unclear. No, it’s to read one thing and then dismiss everything I’m about to say, on the basis of what stereotypes about people who say that one thing think.

I’ve seen this in my arguments against the widespread usage of the word “cis-” to refer to people who are not trans (ex: cis-male is a person born with normal male genitals and treated as a boy/man throughout his life, and who identifies with that identity). The initial assumption is that my actions are formed by the same ignorance and arrogance that causes some to fight against the word – but my thoughts are quite a bit more nuanced than that. But it’s hard for me to express them, because the initial assumption is that I’m full of shit and saying this for the same reason they’ve seen others say this (and there is a lot of bullshit on the web about what is wrong with the cis- prefix, bullshit that is horrible and wrong and definitely anti-trans).

Yet, I make an argument like that, and people make assumptions, without really listening to what I want to say. And, often, these people are advocates for some cause. I probably agree with them far more than I disagree, but they immediately put me in the category of “hateful, anti-trans bigot”, assuming that I hold a bunch of other views (on things other than cis- prefixes) that I don’t hold, because I hold a view on the cis- prefix that is contrary to some of the louder advocacy right now (that said, I’m not the only person that holds this view for the reasons I hold it).

I’ve seen it in other areas of advocacy too. People are fine making assumptions about you if you don’t say exactly the right words, exactly the right way. I might say I don’t support food stamps, which is an accurate statement of my beliefs (for people outside the USA, food stamps aren’t stamps anymore, but are assistance given by the government that can only be used to buy food). Immediately, I can sense my readership getting angry, about to tell me a few pieces of their mind. Some people stopped reading and declared me a conservative asshole. Others assume that I must never have been without food, because if I had been, I could never say something like this. A lot of stereotypes.

Of course when I say I don’t support food stamps, I’m talking something else entirely. I agree with economists that food stamps are a wasteful, inefficient redistribution of income that doesn’t help the economy as much as it could, which doesn’t get people out of poverty, and which is inefficient for the person needing assistance. Oh, again, I’m in the conservative asshole category in the eyes of my readers! I also agree with the most progressive anti-poverty activists (who, ironically agree with the economists!) in that cash distribution is a much better way of helping poor people than earmarked funds are. Rather than giving a family $400 of food assistance, $600 of rent assistance, $350 of medical assistance, $200 of transportation assistance, why not give them the cash for these things? Maybe they can economically eat for less than $400 (I couldn’t if I had a family, but some people have resources I don’t have or abilities I lack). But to get that better job, they need $250 in transportation assistance. Why shouldn’t the people most connected with their needs make that decision? (hint on why people disagree with me: “What if they buy $1000 of lottery tickets?” And that’s a legitimate concern – what if someone runs out of money in the beginning of the month? We can’t let their kids starve. And I agree with that – I won’t get into details now, but there are solutions for that too that don’t involve kids starving; but that said, contrary to what most people seem think, most poor people aren’t poor because they are too stupid to spend their money on food and rent, but rather they are poor because they don’t have enough money – and will spend money they have wisely).  So my view isn’t “Cut support” but rather “Put people in charge of determining what they need, rather than us dictating.” This isn’t even a fringe view – most people who study this field (poverty) would agree with me, including people in government. But it is opposed from the right wing (“ABUSE!!! THINK OF THE ABUSE!!!”) and from other advocates who only read “get rid of food stamps” and immediately make some assumptions. So it probably will never happen.

When we listen to a parent speak, we need to be careful to not make any assumptions. Maybe the parent is an awful curebie who wants sympathy at any cost to their child’s privacy, so is fine posting exaggerated stories about shit smearing on their mommy blog. There certainly are plenty of parents in this category. But maybe they are talking about what they are talking about in a respectful, appropriate way that respects the child’s privacy.  Maybe the child is old enough to understand the implications of consent and has given it, but the mother didn’t know that she was going to be stereotyped as a “mother who wants sympathy” and thus needed to make it clear she didn’t fit the stereotype. But we should be listening, and asking non-accusatory questions, giving people not the benefit of the doubt, but simply recognizing “I don’t know here, but it’s important.”

Now, a good ally won’t be bothered by someone confronting them over a stereotype the self-advocate has about the group the ally is part of. Even if it’s done somewhat aggressively and rudely. They’ll recognize that a minority community has to put up with a lot of shit, and sometimes that is expressed in direct, up-front ways. They’ll see where the pain and anger is coming from. Or maybe the ally is wrong, and does need to be corrected, and is willing to be corrected (if they are an ally, they will listen; note that I don’t believe an ally to autistics has to agree with any one autistic on anything, either – and that’s where things get complicated and messy).

But at the same time, I think sometimes we get a bit too aggressive in our advocacy, seeing enemies that aren’t there. Advocacy is very nuanced much of the time, and not about just the big major things. It’s not just about whether JRC is giving electric shocks to their prisoners (they are, and, yes, it’s wrong). It’s about an assumption that “more intensive” treatment is the right answer for “more severe” behavior. And that “more intensive” treatment works better and quicker for all types of behavior than less intensive. It’s the assumption that the more effort put into therapy, the more positive results. It’s the assumption that behavior X and Y are maladjusted and need therapy. Sometimes they do, but sometimes that “behavior” is just odd but okay.

I’ve also seen the reverse – I’ve seen it assumed that an autistic who speaks on advocacy is anti-parent, angry, and even militant. I’ve had all these things used against me, and while I can’t speak for their accuracy in an unbiased way, I work very hard at channeling my anger appropriately and recognizing the importance of good parents. I certainly don’t see “parents” as the enemy, nor am I trying to wage a war. I’m trying to help people understand and trying to make sure my people can fully participate in and enjoy society – nothing more. So this isn’t exactly a one-way set of stereotypes.

So, when you hear something you disagree with today, I’ll give my thought on what your response should be: Consider whether there may be nuances you aren’t aware of. When someone says they want to get rid of food stamps, are they saying, “I want the poor to starve” or are they saying, “I think the poor know where this money should go better than I do?” When a parent says their 18 year old son wears a diaper, is it possible their 18 year old son has agreed to share that for a shared advocacy reason? Let’s not assume that’s not the case. No, I’m not saying to assume it is the case either. But we should listen and ask true questions, not just jump to accusations.

More on the Link between Autism and Violence

I’ve blogged on this in the past, so I won’t go into too many details now. There is a link.

I’ve also recently put up a survey about intimacy that included some questions about abuse. The numbers show how often we face this type of mistreatment (yes, I’m aware of the limitations in my methodology; that said, the results match remarkably well with “real” research) – 80% of autistic respondents indicated that they have been abused.  FOUR OUT OF FIVE.

We die in bad confrontations with police (particularly if we don’t or can’t speak), where we did nothing wrong other than being unable to communicate with police.

Too often, we are murdered by caregivers, parents, and family (you know, the people who are supposed to have our best interests in mind) – but it doesn’t stop there. When it happens, juries and judges say they can understand why we were murdered and give a light (if any) sentence to the murderer. You see, it’s so horrible to raise us, that of course people would murder us. Or something like that. Other times, we’re told that murder of autistic people is a “mercy killing” because nobody would want to be like us. Of course we’re not asked. It would be wrong to try to link being a parent or family member to being a killer.

And there are plenty of us who kill ourselves. My first serious attempt was in 3rd grade. If every day of your life was filled with the abuse from schoolmates (I could say, “neurotypical school mates” but I don’t believe neurotypicals are a slave to neurology when it comes to violence, despite the fact that it was typically neurotypical students doing the abuse).

Like other minorities, when we’re killed, it’s often preceded by torture. Remember Steven Simpson, who was murdered by being doused in oil and set on fire during his own 18th birthday party. They changed the title of this article, but you can still see it in the URL: http://www.dailymail.co.uk/news/article-2166327/Autistic-teenager-Steven-Simpson-dies-burn-injuries-tanning-oil-prank-went-wrong.html – “Dies from burn injuries during a tanning oil prank that went wrong.” Uh, no. Having anti-gay obscenities written on your body and then being doused in oil and then having your genitals set on fire is not a prank. Being doused in oil and set on fire is a torture. This is the very definition of a hate crime. What’s the punishment for lighting someone on fire, leaving the scene without calling emergency services, not trying to put the fire out? What is the punishment for hearing someone scream in total agony? In the first-world country where this happened, the penalty is nothing for most of the accomplices and 3 1/2 years for the worst of the accomplices. Yet, it is reported as a “prank” and this light sentence is handed out. Yes, there’s a link to autism and violence: you will walk free after just a bit more then 3 years in jail if you light us on fire in England (the USA is no better when it comes to sentences handed down). Lest you think that the UK is just light on sentencing, check out this robber, sentenced to 13 life sentences. Now, this robber is obviously a bad man who needs to go to jail, who did incredible harm to his victims. But it should be noted that he didn’t kill anyone.

Yet autistic people are the ones who are need to be prevented from owning guns, who are a risk to society, who are supposedly (without any evidence whatsoever backing this up) likely to kill you. Uh, no.