Don’t Mourn For Us. Even as a phase.

In 1993, Jim Sinclair wrote what has become a key foundational writing of the autism movement – Don’t Mourn for Us.  It is time to move past this as a community however.

In 1993, Jim’s words were revolutionary – you may need to mourn for the imaginary child you didn’t have on the path to accepting the child you actually have. That the child you mourn for never existed.  That you need to go through that phase and move on. That you may need to mourn for the loss of your dreams and expectations, the realization that you never had what you thought you had (a neurotypical child).

That’s powerful and I won’t detract from Jim’s words here.

But it’s time to move past that. It’s time to move past the expectation that it is normal and okay to be upset when you find out your child is autistic. Even if that normal and okay upset isn’t directed at the autistic child, but directed at this mythical non-existent child you thought you had.

The gay community has went through this. 25 years ago, a child telling their parent, “I’m gay” would cause grief, denial, anger, etc. If the parent was a good parent, they would move past this phase and embrace their child. That was considered a great thing – that the child only had to watch mom and dad mourn for a bit, and that mom and dad got past it.

Today, we see story after story of a different reality – that of mom and dad saying, “That’s awesome, let’s celebrate!” There is now, in many families, joy that their child is living their life in a way that makes the child happy and complete.  Not sadness for loss of expectations or an imagined child, but joy.

Near the end of Don’t Mourn for Us, Jim says:

After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.”

I say parent’s can do this without letting go.  And where they can’t, we’ve failed as advocates to express what it means to be autistic.  Just as it took the LGB community years to get to the point where many parents no longer have to go through a -1-2morning process, it can take us years to get there.  But make no mistake – that is where we need to go.

We need to go to a world that finding out your child is autistic is no more tramatic or horrible or scary than finding out your child is gay (yes, I realize some people don’t have parents that can accept LGBT people – but that’s changing and the next generation will have an easier time, until one day no child is rejected on the basis of LGBT identity). Yes, your child may be disabled. Yes, your child may need to be raised differently than non-autistic children. Yes, your child may not be able to do some things (what child can do all things?). But I’m waiting and looking forward to the day when we don’t talk about how you need to love the child you have, this new-to-you creature, but rather that you just keep loving the child you’ve always known. Sure, you have a new label, but you knew your child before and you will still know your child.

THAT is what I want to see for the autistic community. Maybe that’s radical, but I don’t think it is. I think it is possible, even today, and should be the expectation. Sure, we should recognize the reality that some parents will have to grieve over the child they never had. But that doesn’t mean we should normalize this process or assume that everyone has to go through it. They don’t. It’s okay to not mourn. It’s okay to not mourn for any child, imaginary or real. And that should be the expectation for normalcy of parenting, with compassion (but not normalization) extended to parents that might not quite be here yet.

What’s a Safe Space?

Previously, I’ve written about what I see as the overuse of the word “trigger” – how it has essentially become code word for “something I have a strong negative reaction to” and thus not at all the original intent of the word (which was to label those things that, when present, could cause a person to become a danger to someone or to lose the ability to manage their life for a time).  That overuse means that people who feel strongly about some subjects and people who have serious risk to themselves are characterized the same – and that’s a disservice to people who need to explain that, no, this isn’t just something they strongly oppose and have anger about, but is something they can’t be around – not because they don’t like it, but because they’ll lose control.

There’s another term that has morphed over the years: safe space. This term has evolved over the years – I’m going to discuss that evolution and how safe space might be applied by an organization that isn’t only designed to be a safe space, if that organization would want to. I’m going to use the example of a church service for this, but obviously it would apply to other contexts.

Th term, “safe space,” seems to have originated with domestic violence shelters and outreach – the goal was to provide a physical “safe space” where a victim of domestic violence would be safe from their attacker.  These spaces might not have well publicized locations (so the abuser can’t find it), would not identify people staying there, would have procedures for people arriving and departing the space without being tracked, might have security staff, and would be understanding that people who have been abused in their home will feel uneasy just about anywhere after their sanctuary was invaded.

Even if you wanted to, you couldn’t make something like a church a “safe space” in this regard – it probably wouldn’t have security personnel, a hidden location, and procedures to keep the identity of attendees secret, nor would other attendees be well-vetted before arriving.  They might understand domestic abuse and do what they can to keep a victim physically safe, but a normal Sunday service wouldn’t be a safe-space, no matter how great the church, in the original “safe space” sense, without substantial changes.  That said, that doesn’t prevent them from being decent and using some sense – things like child release policies (make sure children in child care are only released to an authorized person, for instance), ensuring that ushers and others know about legal orders or the need to ask certain people to leave (with police help if needed) if they visit the service, and respecting the idea that the victim is in a very vulnerable and hurt state.  A church might even offer key sacraments through a visit to a truly safe space. But, regardless, it’s not likely to be able to make the service itself a safe space in the same way as a domestic violence shelter may, no matter how well intentioned or how good the people are.

Later, the term, “safe space,” became used by feminist and LGBT groups.  Both used the term to means something different than the space used by the domestic violence safe spaces.

Some women’s groups used the term to mean, “places where we are safe from oppression by men.”  This was some of the original intent of women-only (or womyn-only) space – the idea was that, generally, the people oppressing women were men, so without men, there would be less oppression.  This greatly simplifies the concept, and it is quite a bit more nuanced than this would imply – and I know that (and you should too before you just repeat this!).  However, two things came of this – first, obviously some women can internalize prejudice and thus perpetuate prejudice against themselves and other women.  Secondly, creating such a space meant creating a definition of who could be there – and any such definition will be controversial (for instance, is a trans woman allowed?  Whether or not she’s had surgery?  How about an intersexed person?  Or a trans man?).  There have been many fights over who is a woman (I’ll also add that women aren’t the only marginalized community to fight over who is part of their community).  So this definition has been changing over the years, bringing it more in line with the LGBT definition of safe space.

There’s some purposes served by having a space for a marginalized community – it can be valuable for growing a community, giving people a sense of comfort the outside world lacks, and providing freedom for people to say and do things they might not do in the wider world.

But of course this, too, isn’t a definition of safe space that could be applied to our hypothetical church service – unless the church was to exclude all whites, men, non-disabled, etc, people to make it a safe place in this sense for marginalized populations (such as non-whites, women, disabled people, etc).

That takes us to the LGBT definition.  I remember being a kid in school when this started in my area – certain teachers would have a pink triangle (pointed down). I didn’t know the pink triangle had roots in LGBT oppression and was now a symbol of the fight against that oppression, but I was told it symbolized “safe space.”  That is, it was a place where an LGB (I suspect most safe spaces weren’t ready for T at the time) student could go if he or she needed someone to talk to. It would be a place where the person’s sexual orientation wouldn’t be challenged, nor would the person be told they were a sinner. There was physical safety as well – the person displaying the triangle wasn’t going to attack someone who discloses homosexuality.

Being older, and with more understanding of the LGBT movement, I now realize that it was meant to be a place of support, to give the student a place to have a shoulder to lean on that wouldn’t be judgmental, wouldn’t gossip about it, and maybe could help the student find ways of dealing with the discrimination they face. There weren’t a lot of places where someone could go without hearing about the old testament or telling someone who might gossip about it.  I also learned the LGB safe space concept started not in classrooms, but in corporate America, as a way for allies to show their support in a more practical way.

Other oppressed populations have also adopted this concept (including many women’s rights organizations, replacing the original definitions used by these types of organizations).

I believe this last form of safe space – the LGBT movement’s definition of safe space – is the most common definition of safe space used today.  Today, when someone says, “safe space,” what they are probably saying is, “Certain beliefs will not be expressed here, nor will people be judged for certain actions. There’s a community standard in place.”  For example, a disability-rights safe space might prohibit blatant ablism and might require people participating to understand the basics of disability rights already (so that each new non-disabled person joining the space wouldn’t need to be taught disability 101 by the disabled people in the space who are likely very, very sick of doing this teaching with people).

Again, with our hypothetical church service, making it this type of safe space can be difficult. Let’s continue with our disability-rights safe space concept. Maybe the church does decide that they will not allow, uncontested, the discussion of why disabled people should be in institutions. That won’t however stop someone from coming off the street and raising the topic until someone stands up and says, “We don’t do that here” (which will probably raise all sorts of other problems, like how the person is disabled themselves or how they have a disabled family member). Yes, hopefully others will step up, but should the person be removed from the church or should they be educated? If educated, that is one of the things that safe space is supposed to protect the marginalized person from having to do – it gets old to have to give disability 101 training to everyone! But of course some people do need disability 101 training. Maybe you can get non-disabled people to do that training, but that training will take time. What do you do in the meantime?

I believe strongly in value of all the types of safe space listed above, and feel that it is important to have these spaces for people. But, at the same time, I also believe it’s important to define exactly what we want out of our safe spaces – particularly when extending this to spaces that aren’t dedicated safe spaces in the way a domestic violence shelter may be (such as our hypothetical church service). How do we make that church service (or anything else) a safe space? What does safe mean? Does it mean physical protection from your abusive husband? A place where people who you won’t run into a person who shares a common characteristic with your most common oppressors?  A place where you will not have to listen to people’s “ism’s”, such as racism, ablism, and misogyny (an -ism by another suffix)? Or is it a place where you don’t have to explain to every single new person how to interact decently?

It’s worth having these discussions. And certainly, once people are aware of an issue of oppression or safety, they should consider it in the spaces they have authority in – certainly no ally of the LGBT community, for instance, wants to be part of a place that allows homophobes to spew hate. Or which requires the one person in a commonly oppressed group to have to educate everyone in the organization, continually. Or to allow a domestic abuser to gain access to children he (or she) abused. Nothing is perfect, but we can get better.

At the same time, it’s important to say what we want when we want safe space. What, exactly, are the parameters for our space, and how is this different from just wanting a space where everyone is like us or nobody disagrees with us? It is different, but it’s important to be able to explain why and not just use the code word “safety”. Everyone wants safety, but we all have different ideas of what “safe” means. So we need to be explicit.

In the meantime, we need to keep working to eliminate the -isms, to educate people about different kinds of people, and to make sure abuse victims really are safe from their abusers.

Autistics Speaking Day

I want to say something. So here goes: FUCK.A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscation

Seriously.

No, I’m not trying to make the blog unsafe for kids (that said, I’d love to meet the kid who hasn’t heard the word “fuck”).  But this is a huge part of what I want to say: we will say things people like.  And things they don’t.

We’ll cuss. We’ll insult people. We’ll talk dirty. We’ll lie. We’ll do all the things that the sanitized, nice, touchy-feely movies about escaping from autism or about how there are geniuses in the autistic population won’t say.

We say – if we’re allowed – these things even if we use speech devices. Too often, we’re silenced by being given devices that don’t speak these words. (hint to parents: if your child uses a speech device that uses a language system – not just spelling, but a word-based language system – and it doesn’t include some words you don’t ever want to hear said, the vocabulary is too small for your kid) Seriously, kids cuss. So should autistic kids. Just like neurotypical kids, we need to learn what is and isn’t appropriate in what context. Whether you like it or not, it is appropriate for two fifth graders to share lists of cuss words with each other. It’s not appropriate to do so in the hearing of an adult. That’s a pretty important social lesson to learn – that your communication needs to change based on audience. How do you learn that if you’re only options in language are always appropriate for the adults?

We say we’re horny. That we’re aroused. That we want to have sex. Maybe even that we want to fuck. Just like a neurotypical does. Sure, there are all types of sexualities among autistic people, including asexuality, but most of us aren’t asexual. So we want these things. And need to talk about it. Yes, there are more and less appropriate places. And, yes, we may or may not have our parents’ moral values. But we need the same rights that any other adult has – the ability to express our sexuality, including expressing it in ways that while legal may not be what our parents would like.

Too often, we live in group homes or institutions where the staff fears the complications that a sex life would bring into their own jobs. Or have religious views about what sex is or isn’t okay. That’s fine if we willingly agree to those rules and have real options and places to live that don’t include those rules. But most of the time, we don’t get that choice when placed into group homes or institutions – we have to take what we get, or run away. A neurotypical might choose to live in a monastery. An autistic shouldn’t be forced to. Yet, studies have shown that many – quite possibly most – group homes ban homosexual relationships while allowing limited (usually way too limited) heterosexual relationships. It’s another place where our desires don’t matter.

We also need to be able to say “NO.” As in, “No, I don’t want to go to work today.” Or “No, I don’t want to eat that slop.” Neurotypicals get to do this. Sure, there are consequences (although often we get away with some of this – how many people use a sick day when they aren’t sick?). Heck, sometimes a neurotypical might wake up in the morning and decide – for better or worse – that going to work sucks, that there is more in life than their job, and that they really don’t want to go to their job. Ever again. Yep, that causes unemployment sometimes, but it’s something many neurotypicals have done sometime in their life. They were allowed to. Sure, there are consequences. But they weren’t prevented from making the choice in the first place.

So I guess that’s my theme: if people want us to speak, you need to let us speak. Even when we say shit you don’t like. We’re not pets, we’re not puppets. We’re human. And that means you won’t like every moral choice we make. Just like I won’t like every moral choice you make. That’s life.

 

Why the Trans Stuff?

This could also be titled, “Can you explain what Joel has been up to the last year?”  Or “Why is Joel glad Autreat moved from Johnstown.”

Some readers of this blog may wonder why there is the trans-advocacy stuff here.  It mostly started in 2012 with an issue involving Autreat.

In 2012, as a member of the planning committee, I discovered, by accident, that our Autreat venue at the time (University of Pittsburgh @ Johnstown) was discriminatory against trans people (and, most likely, still is).  Essentially, they decided to prohibit many trans people from using the correct facilities for their gender identity and expression (I.E. a transman should be able to use the men’s room; that said, depending on where he is in his transition and with his expression at the time, he may choose to use the women’s room for safety purposes, which should also be respected as this is an issue of safety from assault, not preference or comfort).  The change was made in 2011, despite a pretty good official non-discrimination policy (that includes, ironically, gender identity).  It was proclaimed semi-officially – it didn’t go through the typical rule making process, nor was it put on paper, but it absolutely was enforced and echoed by official statements made by the University.  In fact, it was enforced against a student at Johnstown who arrested for using the “wrong” facilities and charged with indecent exposure.

This was significant to Autreat because research shows that autistics are highly represented in the trans community (for instance, 6% of people with gender identity disorder are autistic according to one study – much higher than one would expect if there was no relationship).

There’s all sorts of commentary on U Pitt’s decision online and in print – most of it revolving around whether or not different advocacy organizations and trans people responded “right” to the discrimination or whether or not the trans person who was arrested was right or wrong. Unfortunately most of this commentary doesn’t actually question the discrimination, and most seems to imply “just wait it out” is the right response when you personally face discrimination – but that’s the typical response to anything that disturbs the status quo from people not personally bothered by the status quo. However, the root of the problem is not any specific case, but rather official statements from the University administration about how trans people would be treated. For instance, a spokesperson quoted by Think Progress said,

As this [policy] applies to use of facilities, a female who identifies as a male, or a male who identifies as a female, may use restrooms or locker rooms of his or her declared gender identity after he or she has obtained a birth certificate designating the declared gender. This practice applies to student athletes as well.

Many trans people, for many reasons, do not have birth certificates that agree with their gender.  Depending on where you are born, you may be able to change your birth certificate simply by filling out a form (no documentation or surgery requirement), by providing evidence that you are undergoing treatment for Gender Identity Disorder, by proof of certain surgical procedures, or, in some cases (such as if you are born in Ohio), not at all.  Thus, this can place people in not only bad, but dangerous situations of being forced to use a facility that doesn’t match one’s gender expression.

As a result of this discrimination by the venue, I wrote a long document near the end of July addressed to others on the Autreat planning committee (see this PDF: The Right to Pee) about my concerns.  I sent it after Autreat 2012 (we couldn’t move Autreat when this was discovered immediately prior to Autreat 2012, so I held off on the formal presentation of my concerns until after Autreat 2012).  The document includes documentation about the decision by the University, responses to questions I predicted people would have about the policy, and samples of good policies (such as the guidance issued by the NCAA, a group that knows a lot about single-gender activities and facilities usage, particularly in the context of college campuses).  I’m publishing it here primarily so that people can get ideas for their own advocacy and also to understand the problem surrounding the University’s statements (which are too numerous to go into here).  I’m also publishing it because Johnstown, Pennsylvania continues to be a hot spot for discrimination against trans people, unfortunately – I suspect in part due to the University of Pittsburgh normalizing discrimination.

A few months after I wrote about U. Pitt’s discrimination to the committee, the University of Pittsburgh in Johnstown still had not made an offer that accommodated Autreat’s dates and other needs to host Autreat, so the gender identity discrimination issue became somewhat moot at that point (the end of November) and a venue search was then begun.  Unfortunately my document and/or it’s presentation to the committee was insufficient by themselves to persuade the committee to begin the search immediately (it did trigger the creation of an ad-hoc committee, which over a year later still hasn’t produced any recommendations and is probably moot now with the Autreat re-organization), so the search was started at the end of November rather than earlier.  That’s a common problem – it’s hard to convince people that discrimination exists, and it’s even harder for even good people to challenge the status quo in areas that don’t fit with their own personal experience.

It was obviously a relief that a different venue was chosen for Autreat 2013.  AFAIK, California University of Pennsylvania does not have any official policy (or interpretation) that would lend itself towards discrimination.  Nor do I know of any trans discrimination issues recently in California, PA.

The PDF document linked above (as “The Right to Pee”) still basically applies to the University of Pittsburgh (all campuses), with a couple of caveats due to changing circumstances.  First, trans students are now supposedly allowed to use bathrooms corresponding to their identity, on the basis of statements made on a “Student Life” page on the U Pitt website:

“The University has agreed, prior to the finding, to allow people to use the bathrooms with which they identify,” Frietsche said, citing a statement posted May 21 on the Pitt web site’s “single use restrooms on campus” page (www.studentaffairs.pitt.edu/lgbtqa/singleuserestrooms) that lists the locations of non-gender-specific restrooms on campus.

It states, in part: “The University trusts that members of the campus community and their guests will exercise sound judgment and discretion when accessing and using the restrooms.”

Frietsche, quoted above, is a lawyer for the Women’s Law Project, a group helping represent the campus LGBT group in a complaint against the school over the problematic policy (the above quote was from a University Times article).  However, it’s unclear whether or not “sound judgement and discretion” is the same thing as “allowed to use the bathroom that corresponds to your gender expression.”  The terse and strangely worded statement also leaves many questions unanswered – can a transwoman take a PE class offered to women?  Which locker room is she supposed to use?  Which dorm?  And since this new “policy” is listed only on a site that is specific to one campus, on a page that lists where single-occupancy bathrooms are located on the main Pittsburgh campus, does it apply to other campuses, like Johnstown?

The bathroom policy changed to the current “sound judgement and discretion” standard only in response to a legal complaint by the Pittsburgh campus LGBT group. The University seems to be losing in this (thus far, their motions to dismiss the complaint on have been denied, and the parties were ordered into the current phase). However, that complaint was made to the City of Pittsburgh (which has strong non-discrimination law), and it’s unclear how much influence the City of Pittsburgh would have on a campus located in, say, Johnstown, PA.  After all, unlike most places in the US northeast, there are no protections in Johnstown (or most Pennsylvania communities) for trans people – for instance, it is perfectly legal to refuse a trans person service in a restaurant simply because you don’t like their gender identity or you think it’s a sin and you don’t want to “enable sin.”

The complaint is currently in a reconciliation phase where the two parties are to try to come to an agreement that is mutually satisfying, according to the process for complaints made to Pittsburgh’s Human Relations Commission.  If the parties can’t agree (likely), it will go back to the City of Pittsburgh (and, likely, be appealed to state court by whichever side loses).

Other than this, the situation essentially remains as described in the document.  Trans people still don’t have real rights on the U Pitt campuses, with the possible exception of being allowed to use bathrooms (if the school agrees it was sound judgement) and even then possibly only in Pittsburgh.

So, back to why I care – a significant number of autistic people are trans, and it’s simply not possible to have an autistic event without considering the venue’s attitude towards trans people (or, put another way, whether they have simple respect for people). Learning about this also opened my eyes to how easy it is to unknowingly participate in furthering discrimination against trans people (Autreat certainly didn’t know Johnstown was discriminatory when we signed the contract to have Autreat there, and a lack of prior preparation through policy and procedure caused significant delays when trying to figure out what to do about it).  So it’s importance to be careful and do research, and for those of us who have learned about this to speak up when we see gender identity or expression discrimination.  It’s also important to think through these issues so you aren’t learning after there is a problem, but you learn and prepare ahead of time (that said, this shouldn’t be hard: people leaving others alone in the bathroom should also be left alone – duh – how hard is this to figure out?). As I researched this particular issue, it was pretty clear that trans people routinely face discrimination in all areas of their lives and that the fight for trans rights is – as Vice President Joe Biden phrased it – the civil rights issue of our times.  I’d like to be on the right side of history and to be able to tell the next generation, “I did my part.”

That’s why I care.

A Little Knowledge is a Good Thing?

We’ve heard it a lot.  We need more awareness.  Whether it’s racism, ablism, homophobia, or something else, it’s about awareness.  Once people understand, they’ll become decent humans.

That’s somewhat true – ignorance does cause a lot of problems.  But there’s a problem with just thinking awareness will solve it.  People who aren’t good at something often think they are – see Dunning-Kruger Effect.  Of course what Dunning and Kruger studied was areas where people already thought they had some understanding – things like humor.  Very few people are completely incompetent at humor (that’s no joke).

Ask an 12 year old who is reasonably good at math if they are good at math, although maybe not quite a genius at it.  Now ask a math professor with years of post-graduate research.  I’ll be the math professor rates himself lower.  He knows a lot better how much math he doesn’t know.  He also probably knows some really, really, really great experts in math.  The 12 year old probably doesn’t.  He probably wouldn’t even define math the same way.

But what if you ask someone about astrophysics?  Or auto mechanics?  I’m not sure, but I know in other commonly-perceived to be difficult tasks – such as chess or computer programming, people generally underestimate their skills compared to their peers – they think others are better than they are, even when they aren’t.  The key is that people focus on their own skills – if they feel reasonably competent at something, they are of course above average, while if they don’t feel competent, then they are below average.  And of course you don’t feel average about things you know nothing about – even if most people also know nothing about them.

How does this apply to disability or other minorities?  I think it explains a ton of mistreatment.  Someone who knows nothing about a minority or disability, and knows it, will probably be decent.  Why?  They’ll listen.  And since everyone with a disability or who is a member of a minority (or both) is unique, that’s important.  Lack of knowledge in this case is actually a good thing.

What happens when someone has had an hour or two of disability awareness, LGBT sensitivity training, or racial relations education?  They now know a lot more than they used to – not enough to actually be useful, but more than they did.  They know more than a lot of people do, and almost certainly more than they think most people know.  They’re feeling pretty good about themselves.

That’s dangerous.

That’s dangerous because it’s exactly then that people make assumptions.  “Oh, I know about blind people.  They want me to tell them where their food is on their plate” (they may, but they also might already know – before you spend 5 minutes explaining, you might ask!).  Meanwhile they will not think of telling the blind person, “Your bathroom curtains are open, so you’ll probably want to close them before you shower.” That wasn’t covered (again, you should ask and not assume!).  But if they asked the blind person, “Do you want any help, and if so, what can I do?” the blind person would probably let them know what they should (or shouldn’t do).

I’ve seen this with LGBT issues – if someone knows the words (What’s a demisexual?  What’s a cismale?  What does “curious” mean when someone talks about their orientation?), then they see themselves as fairly knowledgable.  But of course there’s a lot more to understanding the LGBT community than knowing definitions – people literally spend their lives trying to understand the LGBT community from both the inside and the outside of that community.  Even more significantly, if I know a man is gay, what do I know about his attractions?  It turns out, not much.  Sure, I can probably guess he’s likely more attracted to men than women in an abstract sense, but I have no way of knowing from just knowing he’s gay if he’s attracted to any specific man.  Or if he says he’s straight, that doesn’t mean he hasn’t had consensual homosexual sex.  But too often the thrill of being educated about LGBT issues hides the complexity of real lives.  Someone that knows nothing will probably be more receptive to some of the complexity.

With autistic people, what I fear most are people who have been exposed in very limited situations to autistic people (for instance, worked part time for a short time in a group home or institution).  They don’t know what they don’t know – they’ve seen only a few autistic people in only a few environments.  They’ve heard about them from others that share their primary experience of being in those environments with autistic people.  So it starts a bit skewed.  Add to that, the person now knows a lot more than they did before, assuming they knew almost nothing about autism.  They now have awareness.

Awareness isn’t the same as competence or understanding, however.  They know only a little bit.  Unfortunately, people often think they know more than that.  This goes both ways in the autism community – people generalize about adults on the basis of a child they know.  Or adults with autism, who haven’t had children, generalize about parenting when they have little experience other than having been raised by parents.  A little knowledge is a dangerous thing indeed.

If I want to tell someone about my autism, for any reason, I hope and pray that they don’t know anything about autism.  If they do, I have to figure out what they know and somehow unteach that part of it from them, or at least provide evidence it doesn’t apply to me.  That’s difficult (how can I know what they’ve been taught?).  It can be downright deadly in a medical environment – if the doctor associates autism with crazy, you may receive treatment for “crazy” while your primary complaint is ignored.  A little knowledge is dangerous indeed.

Yet, if I’m in a medical situation and the person has never heard of autism, then I’m in the position to teach them what matters for me.  That’s actually a better place to be in.  I can explain that it makes it hard for me to express that I’m in pain or localize a symptom or make appointments.  Rather than having to teach that it doesn’t mean I’m violent, don’t want to socialize, can’t participate in my own treatment, or whatever else.  It’s a lot more efficient to be the first person to tell someone.  It’s nice when I don’t have to break through the wall of “I already know about this.”

Maybe awareness is good.  But not in small doses.