I’ve been home for about a week after visiting my parents, and I wanted to get my thoughts together before I began writing a new post. I had the best visit I’ve ever had with my family, and it’s because I finally feel like I can be open around my family about the fact that I’m a guy–and a guy with Aspergers at that.

So since I’ve been back, I’ve been doing a lot of thinking about my primal wound feelings. My entire life, I felt like I wanted to have this connection with my family that I just wasn’t able to have. Those of you who have been reading my blog for a while know my history already. I wasn’t diagnosed with Aspergers until I was 31 or 32… strangely enough, the exact date escapes me. I also didn’t know how to express my maleness to my family as a child. I hid it from myself pretty well, and it wasn’t until after my Aspergers diagnosis that I finally began to explore my gender identity and things started falling in place. Over the past year, I’ve been working really hard on myself with my life coach and with a therapist and I’ve learned a lot about the primal wound feelings that used to drive my behavior…about the way that my feelings of anger and invisibility from childhood intersected with my natural tendencies to keep my thoughts and feelings to myself so that I was always feeling invisible and melting down. At this point, I’ve been sober from anger incidents for about a year, with the exception of one slip when I was transitioning to being financially independent in February. I’m sure I’ve had smaller slips here and there, but nothing major.

So anyway, after this visit with my family, I can safely say that my primal wound is healing over after all these years and becoming a primal scar. I’m actually quite proud of this scar because I’m hoping to use it as the foundation for everything I’m doing to change the world.  See, a lot of my pain and anger was based on feeling invisible–on thinking not only did people who I wanted to be close to not know who I am, but in my mind, I thought they did not care to know the real me. So now that I am healing, I can use those experiences to help other people. I’ve thought for a while now that I’d like to help clear the way for other kids like me to have an easier time than I had. I’m planning on moving into public speaking as well as targeting both my non-fiction and my fiction towards kids on the spectrum and kids who are transgender as well their parents and other adults who care about them.

So I’d like to say just a few words to encourage anyone who is struggling with their own primal wounds. I think a lot more people have feelings of being broken hearted and invisible from childhood than we really admit or are aware of. Whether you’re transgender or not, whether you have Aspergers or not, whoever and whatever you are, life disappointed you in some way when you were a kid. And I think that a lot of people are dominated by those feelings and lots of people recreate those feelings in their adult relationships. I know I sure have and am working on changing those patterns.

So this is kind of rambly, but here are a few thoughts I want to share with you all.

1. A lot of my misery was self-inflicted. Of course, everybody’s situation is different and you have to assess for yourself where things are, but what I’ve found recently is that my family is a lot more accepting of me than I thought they’d be. I started keeping my feelings to myself when I was a kid and I hid them pretty well from myself. By the time I came out to myself, I was pretty convinced that my family wouldn’t accept me. Turned out I was wrong about that. I’m glad I started taking steps to  reach out to them. After 34 years, we are finally getting to know each other.
2. My primal wound was a pain I wanted to get rid of, but my primal scar is something I’m proud of. Open wounds are painful, period. Mine was so painful I ran for it for many years. In my next post I’m gonna talk more about my anger addiction, but my fear of my primal wound was a big part of what was driving my addictive behavior. Anyway, my primal SCAR is a different story.  My scar in fact tells its own story. It’s a sign that I survived those early, painful years where I didn’t know how to be who I was. It’s healed over now and it reminds me of where I’ve been and what my purpose is.
3. Primal wounds don’t have to stay open forever. When I first started coaching and therapy last year I really wasn’t sure how much healing I could do. I truly thought that I was damaged irreparably by my primal wound, that I could go so far but no farther. Years of running from pain had magnified the pain so much in my mind that I didn’t think I could handle it, and then once I began to let it back into consciousness I didn’t think it could ever heal. I figured I was damaged permanently but I kept going and eventually the pain did heal. 

What I’d really like to say is that there’s hope for anyone out there who is reading this and feeling like they’re in any way damaged beyond repair. Whether something about having Aspergers or something about being transgender or some other issue altogether is bothering you, it is possible to move through it and find happiness. 

I’d like to hear your stories. What kinds of things have you overcome or (if you feel comfortable) are you hoping to overcome?

I’ve got a lot of thoughts bouncing around my head this morning. I haven’t written a blog in about two weeks, which I feel bad about since it’s Autism Awareness Month, but I was going through some things and I just didn’t feel a whole lot like writing.

It all started with me losing the person who I thought was my best friend, and part of the reason we are no longer friends is that she could not handle me having Aspergers. Or, more specifically, she could not handle what she THOUGHT me having Aspergers meant. Like many people, she apparently thought that me having Aspergers was a “problem,” that I needed to learn how to be “normal” and “like everyone else.” She thought I was incapable of understanding human relationships. She thought that everyone with Aspergers clings to people and imitates them and has no identity of their own. She thought that people with Aspergers don’t have the same emotions and aren’t capable of empathy. 

I’m getting wound up just writing all that so I’m gonna stop writing it, but I want to make something clear:

I have never thought and never will think that Aspergers is a disease, a disability or something to be ashamed of. I am a person with Aspergers and I wouldn’t want it any other way.

If you’ve read my blog and seen all the posts about why I don’t want to be cured and how I work around the obstacles that Aspergers sometimes presents and how glad I am to be who I am, you already know this, but it bears repeating. I know too many people who keep themselves hidden away because they think people will reject them or will try to put them in an institution or will treat them differently. Almost everyone I know with Aspergers is in the closet.

I’ve been a closeted trans guy and I know how much that hurts. Hiding = death, whether its Aspergers or transgender issues or sexual orientation or anything else. Basically any time you internalize the message that something is “wrong” or “sinful” and that you have to hide it, you begin to hate that part of yourself for existing. You begin to try to cut it off from yourself. You end up angry or depressed, and in some cases you end up dead. And the answer to all that self-hatred is just to give yourself permission to exist and take pride in who you are.

So I’m writing this blog to make it clear that I am a proud Aspie. I also am noticing some of the ways anti-Aspergers prejudice manifests itself in well-meaning people.

Last week I made a speech about Aspergers for my Toastmasters group. My speech was called, “Don’t cure autism.” and it was about why I don’t want a cure. Some people in the group told me afterwards that they disagreed with me even though they respect and accept me as a person with Aspergers. The beliefs of these people seemed to be that it was okay that I have Aspergers, but the world would be better off without autism because autism is “difficult.”

I really don’t understand how people can, in the same breath, tell me they respect and Love me and tell me they think autism is a bad thing. It’s as if the words “I have Aspergers” don’t register because I’m not what they think autism is. People think autism is sitting in a basement flapping your arms and rocking. And yeah sometimes that is autism, and that shouldn’t be cured either–a life is still a life and those people who suffer from that type of autism still have the right to exist (and we don’t know what is going on in their heads, either, so let’s not assume they’re miserable or tragic figures, okay?). But that is not all autism is and it certainly isn’t what I am and people want to make me into someone who doesn’t have autism and I don’t like it.

I was talking with someone I respect a lot the other day who suggested that I leave the fact that I have Aspergers off of my dating profile. I’m first beginning to understand the concept of not putting everything about me on my profile and allowing people to see me in my best light, but I think leaving off Aspergers goes too far. If Aspergers is in the category of “private information only close friends should know about you,” then something must be wrong with having it. And I can’t simultaneously be an advocate for Aspergers acceptance and keep it secret that I have Aspergers.

It hurts to hear things like this because it hurts to think that people in general that I respect and Love respect and Love me *despite* Aspergers. It’s almost as if people are syaing, “You have this horrible thing but we’ll ignore it because we Love you.” And I just feel that Love means Loving all of what makes me me. It’s not any different than someone saying, “I Love the part of you that’s female but this male part has to go.” I wouldn’t keep it secret that I’m a guy so why should I hide that I have Aspergers?

Someday–in no small part thanks to me–we will live in a world where the idea of hiding that someone has Aspergers is seen as ridiculous, where Aspergers is seen as a difference and not as a deformity, where people like me are not constantly being subjected to the idea that we are tragedies or diseases or in need of fixing.

Someday.

For today, I will just be one lone man who is willing to stand up and be open about who he is.

Okay, so I started to write a post about responsibility and Aspergers that never quite got finished. So I’m going to try to get back on track and write about it tonight. I’m kind of conflicted because I want to write about all sorts of things that are specifically for Autism Awareness Month but I also want to  write about personal things, which is a kind of awareness too since I do have Aspergers.

So I guess I’ll start with me. I’ve been learning a lot about self-responsibility through doing the exercises in Six Pillars of Self-Esteem, and I think I’ve grown a lot. I’m really grateful that I have safe spaces to explore this kind of thing in. The truth is that I am almost 34 years old and I should have learned a long time ago how to take responsibility for my thoughts, feelings and actions, but I didn’t. So I’m learning now. And so I’m glad I have places where I can share what I’m learning about how responsibility works and not be told that I should have known this already.

This brings me to the point I really wanted to make tonight. I really feel like a lot of people use Aspergers as an excuse. I’ve met people on Facebook and Twitter that have Aspergers, and their response to everything seems to be, “Oh, I have Aspergers.” If they say something hurtful. 

I try as hard as I can not to use Aspergers as an excuse and I hope that I’ve succeeded in that. Sometimes I feel like certain things are harder for me because of Aspergers. I know, for example, that one of the speeches I have to do for Toastmasters involves using a lot of body language, and that’s going to be harder for me because body language is not natural to me. I’m already thinking about whether I can make my body language speech about my difficulties with body language. 

The thing is, though, there’s a difference between acknowledging that something is difficult because of Aspergers and using Aspergers as an excuse. Some people might say they can’t do a speech that requires them to use body language or that this requirement is ableist or that this is why they wish they didn’t have Aspergers and were “normal” like everyone else. Obviously, I don’t agree with anything like that. I try to start from the perspective that certain things are going to be difficult because of Aspergers and then see what I can learn or use to overcome it. Or at least I do that most of the time. I admit, there are some times that I wish I didn’t have to use accommodations because somewhere in the back of my mind I feel like I should have outgrown them or I should have learned how to do this when I was five and all that sort of stuff. And I hate feeling disabled.  

So I try to deal with those feelings and then put them aside and learn as best as I can and live my life as best as I can. I cannot and do not allow Aspergers to limit me. I think of myself as an impossible thing and do my best to be that impossible thing.  Aspergers or no Aspergers, I intend to do great things, and that means I have to learn skills that may be more natural to some people. But so what? Some people have to work hard to learn how to write, and that comes naturally to me. Everyone’s different and everyone has different skills. Nothing needs to be an excuse for not learning.

I want to end this blog by sharing an article about something that happened last year. It pissed me off at the time and in the last couple of days it pissed me off again because it popped into my head when I started thinking about responsibility. 

Alleged Looter With Asperger’s Syndrome Comes Under Fire In New Zealand

According to this article, a young man with Aspergers in New Zealand was accused of looting a home after the big earthquake in Christchurch last year. The young man–and his parents–claimed Aspergers was to blame for his behavior. Light bulbs and electrical things were one of his obsessive hobbies, and the defense was that he couldn’t help stealing because Aspergers compelled him to steal things related to his hobbies.

I find this argument disgusting. Okay, I suppose it’s possible that someone somewhere is so disabled they don’t understand that just because light bulbs interest them doesn’t mean they have the right to take them. But I have not met anyone with Aspergers who is that disabled, and if such a person exists then it is his or her parents’ job to protect them from harming others or themselves rather than shaking their heads and saying, “Aspergers.”

The lack of responsibility just drips off the page when I read this article. It not only does this young man a disservice, but does all of us in the Aspergers community a disservice. It spreads the rumor that people with Aspergers are not to be trusted at all, that we will lie and steal and G-d knows what else in order to get a light bulb or a trinket or some other thing that is insignificant to the rest of the world but important to us.

I have a problem with invisibility that stems from my primal wound, and so I absolutely hate being falsely accused or people thinking things about me that are just not true. I especially hate being thought of as a liar or thief because it’s so the opposite of who I am. I’m slowly learning how to detach from other people’s opinions of me and just be who I am regardless of what they think but I still get triggered when I hear prejudiced and ridiculous things about how Aspergers makes people steal.

There have been some articles—not too many but I could probably find them easily if I cared to look–about police mistreatment of people with Aspergers. That’s a little beyond the scope of this blog, but it just seems to me that it doesn’t help anything to teach the world that Aspergers = inability to have morals or follow laws. If police officers believe this kind of crap, it makes it easier for them to behave inappropriately towards people with Aspergers. This doesn’t mean that police officers aren’t responsible for their actions, but let’s not encourage them to discriminate while complaining that they do.

So yeah. I’ve got a good deal of anger towards the idea that people with Aspergers can’t control themselves or at the mercy of their obsessions.  I think I am proof that this isn’t true, and I hope people stop trying to perpetuate ideas like this. It doesn’t help anyone, least of all the people it’s supposed to protect.

I’m sure you’re going to hear me say this a lot during the course of Autism Awareness Month, but I want to say that autism does not need to be cured.

I’ve already addressed this in some recent blog posts, but I think it bears repeating. Today I saw this article:

Obese Moms More Likely to Have Autistic Child, Study Suggests

This study kind of put a damper on an otherwise excellent day. (I had my pre-hormone checkup today and it looks like I’m going to be getting on hormones pretty soon, so this was a GREAT day!) I was, quite frankly, annoyed with it. 

First I want to say that there are a lot of good reasons for overweight moms to lose their excess weight, especially when pregnant. Pregnancy creates additional health risks for some women, once they have their baby it can be hard to get excess weight off and whatever the mother eats the child eats. So I’m not disputing that trying to take care of your weight while pregnant is probably a Good Idea. As long as you do it under a doctor’s supervision, of course.  

However, I really don’t think avoiding autism should be part of the discussion about obesity, for a couple of reasons. First of all, this kind of study feeds into the general idea that autism is a Bad Thing and we should try to do things to avoid it’s occurrence. Obviously, I disagree with that stance. I wouldn’t be here if autism had been eradicated prior to my birth, at least not as the me that I know myself to be. I like who I am. I wouldn’t want anyone to change it or to stop future people like me from being born.

Secondly, I really fear that some women who are not obese at all are going to panic. There are some women who believe autism is an absolute tragedy. These are the women who worry about vaccinations causing autism more than they do about what measles, mumps and rubella might do to their children and to other children who are exposed to their children. If their child turns out to be autistic, they may worry more about what they did to cause it than about accepting their child as he or she is and may have a hard time accepting the diagnosis or doing their best for that child.

I really worry about people who feel this way because if reports say that obesity leads to autism, I can see them getting obsessed with their weight and worrying that being just a few pounds overweight will make their child autistic. This could cause them to diet in an unhealthy manner while pregnant, which can’t be good for either the parent or the child.

Obesity is linked to a whole score of diseases, and so of course it is probably better than pregnant women not be obese. However, their motivation for losing weight should be the general health of themselves and their children, not trying to avoid autism. That’s about all I rally have to say about that. This blog is shorter than most of my blogs because I just don’t see any point to discussion beyond saying, “Okay, so obesity can cause autism. So what?”

Thoughts?

 

I just finished reading Hollow Earth, by John and Carole E. Barrowman.

I’m of course a huge Barrowman fan, so I figured if I shared with my readers that I Loved this book a couple of people would  buy it and I could pay back about 1 percent of the way his work has changed my life.

No, I’m not biased. Not one bit.

But I really did Love this book. I can’t talk a lot about the specifics because I Loved it so much that I kept making myself put it down so that it wouldn’t end, and so I’m going to have to read it again to tell you which details that I Loved best. But for now, I’d like to explain how Hollow Earth appeals to me as a person with Aspergers.

The basic plot of this book involves a set of 12-year-old twins, Matt and Em Calder,  who have magical powers. Specifically, the twins can do two things: they can make drawings come to life (which is what the book’s plot hinges on) and they can communicate telepathically with each other. They each have certain strengths and weaknesses. For example, Em is, as her name may suggest, very empathetic and can tune into people’s intentions, which is important because some people are frightened of the twins’ powers or want to use them for their own purposes. She also is prone to fear, which can cause horrible things to manifest. Matt is better at animating than Em but is often overcome with anger. Guess which one I identified with more? lol 

I am not sure how much of the book’s plot to talk about because I’m not good at finding the right balance between explaining what the book is about and giving things away to potential readers. So I’m going to focus on some of the book’s major themes, which really really affected me.

First of all, there’s an emphasis on the proper role of emotion which I absolutely Loved. One of the things I’m struggling with in my own life is not allowing anger or fear to completely cloud my vision and my ability to think. In Hollow Earth, these powerful emotions can literally change the landscape. Em manifests some truly terrifying things when she gets spooked and she needs her brother–and later their friend Zach–to help her keep fear under control so that it doesn’t get in the way of what she can do with her amazing powers. Similarly, Matt’s anger causes him to misuse his power sometimes and to act recklessly at times, which puts him into some dangerous situations.

The other theme that I really enjoyed in this book is that the children learn that their powers are real, that they can do anything they can imagine (quite literally since they can draw it into existence) and that there are some adults in the world who are terrified of the power of their imaginations. I really think that this is not so far off from the truth of our world. Obviously, people can’t literally make drawings come to life, although we can manifest the things we want in our lives through drawing, writing and imagining the lives we want. But I do think that it’s important to realize that there are some people that are frightened of the power of our imaginations and some people who are jealous and some people who are going to do everything they can to stop us–and that doesn’t make it wrong for us to be powerful. The children are in a loving environment where they are being taught to use their powers correctly. I think that shows children both the beauty and horror of our world and encourages them to embrace their own power and try their best not to be afraid of those who oppose them.

I think this theme really spoke to my experiences as an Aspie than anything else. You know how open I am about having Aspergers and how much it insults me that people tell me “but you seem so normal.” You know I would never want to be cured of my Aspergers and I think it gives me some abilities in some areas of my life that I wouldn’t have if I was neurotypical. And recently, as Autism Awareness month kicks off, I’ve been aware of the sharp divide between the people like me who want more awareness so that we can help autistic people use their autistic minds to their fullest potential and people who would like autism eradicated and see people like me as tragedies and aberrations and abnormalities. So for that reason, I really really was into the conflict in Hollow Earth’s fictional society. There are people in that society who want to bind the children’s imaginations and take them out of our world because they are afraid of their unusual and unique powers. I’m glad that there are books like Hollow Earth that address the way adults sometimes handle fear and hurt people. It means a lot to me.

Similarly, I appreciated very much that the third member of the team of children in Hollow Earth is deaf. Of course as an American I keep imagining him using American Sign Language and have to remind myself that his signs are probably somewhat different. (Since I Love sign language, although I have a hard time making signs because of my motor skills and coordination difficulties, I can’t wait for the movie version to see what British Sign Language–or is there a specific Scottish counterpart?–looks like.) Anyway, it was nice to see a differently abled child playing a major role in an adventure story.

Now, I’d like to say a couple of things about the environment of this book. I’m a big Harry Potter fan–one of the things that led to my Aspergers diagnosis was that I talked incessantly about Harry Potter throughout the evaluation. I’m also now a big Hollow Earth fan who can’t wait for the sequel. Both series of books involve a team of special children with magical powers, which is why I love them both. But they are totally different. One of the things I think makes Hollow Earth unique is that the children don’t go off to a special school or a special world. Their world is integrated within our world. They go to live with their grandfather and other adults who have powers like theirs on Auchimurn Island in Scotland. Basically, they are surrounded by adults who Love and guide them–and some that have nefarious wishes for them too, of course–so they are pretty much living the lives of normal children who just happen to have magical powers. Most of the mischief they get into is “normal” mischief and mild rebellion against the adults in their lives, who try to keep tabs on them and try to keep them safe.  I think this normalcy really helped draw me into the story. These children act like any children who have to spend a summer holiday on a small island would do, with the added complication that they have powers that scare certain adults.

This book is, of course, meant for the same age group as Harry Potter, but obviously it is a book adults can get into and read. I found parts of it very suspenseful, and in all honesty one reason it took me so long (besides the fact that I didn’t want to finish!) is that parts of it were really scary.  If I really identify the characters I have a hard time not running away if they’re facing danger. I’ve been that way since I was a little kid. All of which is a way of saying, this book contains enough suspense for both adults and kids, and you will not regret reading it regardless of your physical age. 

Now, Hollow Earth does not come out in the US until the fall, but you can order it from Amazon and a British bookseller will get it to you in about two weeks. That’s what I did because I wanted to read it right away. Hopefully when fall comes the Barrowmans will do a book signing tour here so that I can get my copy signed. I understand there’s also an audio version coming out soon, which I will also get as soon as possible.

 

This blog is going to be very quick because it’s late and really the only reason I’m writing a blog at all is because I promised I would write one every day. Technically, it’s tomorrow, since it’s 1 AM, so I broke my promise, but a promise is a promise.

I am not working tomorrow. I work Sundays through Thursdays and take Fridays and Saturdays off. I always look forward to the weekend, but I always spend the entire weekend being vaguely depressed and relieved when Sunday comes and I get back to work. I think the change in routine throws me off. I’m not very good at relaxing, it seems. If I try to relax and play games and watch TV and generally lie around, I end up thinking I am wasting time and should be doing something important.

This isn’t, strictly speaking, an Aspergers thing, but I suspect it’s related. I suspect my inability to enjoy relaxing comes from there not being structure on weekends. During the work week, my life is pretty structured. I get up at 6, do my gratitude list and psychological exercises, watch my affirmations videos, exercise, eat, shower and get to work. Lunch is at 12, work ends at 5:30. Eat supper, write a blog, go to bed. Repeat tomorrow.

But during the weekend there is no structure. I get up when I want, do my gratitude list and then I’m free to do whatever. And I kind of flounder around all day, feeling like the world has fallen out from underneath me, because I don’t have that structure.

I’m not really sure what to do about this just yet. I know balance is hard for me and that I need to be able to relax and not just work all the time. But relaxing seems like such hard work…

I need to find a way to structure my weekends.

In the meantime, this is what I have been working on all night:

This is a banner that appeals to my inner child. I am using it to motivate myself to keep doing the impossible. I Love Mr. Impossible–it was one of my favorite stories as a kid and now I watch the video every day as part of my affirmation process. In many ways I am doing the impossible by being so successful as an adult with Aspergers. I’m showing the world that Aspergers doesn’t have to limit your potential. It’s just a different way of being in the world. And I plan to do more impossible things.

One of my obsessions is fooling around with Gimp. I’ve learned how to change the background of an image. For example, I made it look like I was in New York City:

 

This photo was really taken in my bedroom.

 

And tonight I learned how to  make curved text. It doesn’t look too impressive on this banner I don’t think, because the text is barely curved, but this was after three hours of fooling around with it and watching a tutorial on Youtube and trying to get it right, so I’m pretty pleased. I’m going to be experimenting with other things I can do with text later.

Although I am not really a graphic designer, I enjoy this stuff and I’m starting to wonder if I can make money off of my obsession I’m thinking about trying to sell some graphic services on Ebay, but I think I need to learn a little more first.

So that’s about all I have to say tonight. I’m sorry this blog wasn’t directly about autism awareness, but I guess by showing some of what it’s like to be me, I’m spreading awareness anyway.

I wanted to say a few words about why I support Autism Awareness Month. I know some people in the autism/Aspergers community are against the idea because of the movement to “cure” autism. I touched briefly upon this in my blog on Monday, but I want to go more in depth about it.

According to this, autism awareness is a bad idea because it’s sponsored by those organizations that think autism is a tragedy and would like to see it eradicated from the planet. I agree that trying to cure autism or trying to make autistic people’s brains magically become just like neurotypical people’s brains are colossally bad ideas. Those ideas are dangerous and can’t lead anywhere good, in my opinion. That’s why I’m for education and intervention and not for making a world that is devoid of autism.

But that’s also why I support autism awareness.

See, it’s not like if everybody went on “strike” and refused to acknowledge Autism Awareness Month it would really accomplish anything for the autism/Aspergers community. The fact is that there does need to be more awareness. Not…more awareness of how prevalent autism is so that we can stop people from developing it. More awareness of how the autistic mind works and how autistic people learn. Really, what we need is more awareness that this is a beautiful, diverse world we live in and that people with autism learn differently and express themselves differently than people who don’t but that doesn’t make them better or worse than anybody else. The problem isn’t with the word awareness. The problem is with many people’s views of what exactly we should be aware of when it comes to autism.

There’s only one way that’s ever gonna change, and it’s not by refusing to acknowledge Autism Awareness month. It’s by starting our own, competing campaign. Instead of complaining that autism “awareness” campaigns based on eradicating autism are hurtful and offensive, why not manifest the type of change we’d really like to see? 

I’ve challenged myself to write a blog every day this month. I’ve been averaging about three a week but this month I’m going for a blog seven days a week, because that’s how I plan to spread actual awareness. I’m a person with Aspergers, and while I don’t consciously set out to make every moment of my life a testimonial to what it’s like to have Aspergers, that’s what ends up happening. But the thing is, that’s only true because I stand up proudly and say that I have Aspergers. Many of us don’t. Many of us are afraid that people will shun us or we’ll get locked up or something bad will happen because we have Aspergers.

I’ve never been a fan of closets. Not as a trans guy, not as a person with Aspergers, not as an asexual/pansexual/demisexual person. One of the big reasons, besides how much better I feel when I try to be myself instead of trying to hide who I am, is because whenever I hide, I do a disservice to all the people out there just like me who need to know that they are not alone.

So anyway, I got a little off track but my point was, when we write angry rants about how insulting Autism Awareness Month is, we’re spreading awareness–but I think there’s a better way. I think if we all share what our lives are like as people with autism, both the good and the bad, then we’d do so much more to create a world where autism is seen as a difference rather than a tragedy.

Like Ghandi says, “Be the change you want to see in the world.”

That’s why I participate in Autism Awareness Month.

I’ve been gearing up all day to write this post. I really want to, and yet at the same time I don’t, because I don’t know any way to tell the story I’m about to tell you all without making myself sound like a victim. And if there’s one thing I’m not, it’s a victim.

Anyway, tonight’s blog is going to be about the horrific experience I had when I was teaching. I’m keeping it all anonymous because even though it’s all true I threw out all the documentation when I left that place and I don’t want to get sued, plus I don’t know exactly what the privacy laws are. So names left out to protect the guilty.

*breathes* Okay, so this was back in 2008. It was my second year teaching special education, and at the beginning of the year I had no idea it was gonna be the last time I set foot in a classroom, that by June I was gonna have to quit for my own sanity. I had moved out to North Carolina to get my teaching license because I wanted to work with autistic kids. I didn’t know back then that I had Aspergers (and didn’t know who I was either, but that’s got nothing to do with this story.) But I’d always felt this affinity for autistic kids… I remember being obsessed with St. Elsewhere because of the autistic boy and feeling like this was in some way me. And so when I was trying to pick up the pieces of my shattered life after a couple of years living with someone I loved very much who was cheating on me with crack cocaine and alcohol, I decided I needed to do something with my life, and I decided I wanted to teach. Specifically, I wanted to teach autistic kids. I got into a program in Fayetteville State, moved to North Carolina, and attempted to start a new life as a teacher.

It was hard to find a job cause even though I was doing this thing called lateral entry, where I was supposed to be able to teach while getting my license, most schools didn’t understand the rules and many didn’t want to take a chance on me. Finally a little school in a small town in the heart of the Bible Belt decided to hire me. The first year, I worked in an elementary school, and a lot of things happened that should never have happened, but I don’t have time to go into all that right now. For the most part the kids weren’t autistic. There was one little boy that I think was, although he was labeled as mentally retarded because he refused to take his IQ test. Strangers scared him and so he cried the whole time the psychologist tried to give him the test and refused to cooperate and the school labeled him as having a low IQ as a result.

Anyway, like I said, that’s a story for another time. This story really begins in August of the following year when I was transferred to the middle school in the same district. I was both excited and scared by this. Scared because the kids were middle schoolers and excited because I would FINALLY get to work with autistic children. That’s the story I want to share, because I think it demonstrates better than I could why we need real awareness–not simple awareness that autism exists, not drives for a “cure,” not overwhelmed or (in some cases) downright hateful parents talking about how horrible it is that they have autistic children–but awareness that autistic kids are human beings, that some of them literally cannot speak for themselves and that we, as a society, need to stand up for them and make sure they are treated fairly rather than try to stop them from existing.

So yeah. I should have known something was wrong because I went to the middle school a few days early to check things out and the principal did not know what classroom my four children were going to be in. She looked at a map and chose something hastily. It turned out to be a small room across from a closet. The room was used for storage; there were about 1,000 chairs in it. It was literally FULL of those chairs with a little desk attached to them. I was encouraged to decorate the room and reassured several times the chairs would be gone before Open House. Nobody ever came for them and my TA and I had to move all the excess chairs out of the building ourselves so that there would be room for the parents and children to walk.

Three of the children were non-verbal and one of them had echolalia; this child would repeat what you said but otherwise did not communicate. Two of the children were taller than me. The one who was biggest and tallest seemed terrified to walk into the classroom, presumably because it was a different room than he’d been in the year before, and I remember it struck me that this boy who was shaped like a football player seemed so frightened.

Anyway, so the year began and the occupational therapists came by and told me they were so glad I was here and I had been recommended for this position because all last year these kids had sat in a different classroom and nobody paid any attention to them and nobody tried to teach them. They knew things would be different because they knew me from the elementary school. They gave me the phone number of a woman from a local autism organization who could teach me how to set up the classroom so it would be conducive to teaching autistic children. I did. The woman showed me how to put down colored tape to separate the room into different areas so that they could learn what activities happened in which area and how to set up the closet across the hall as a sensory area, with balls and other equipment the occupational therapists had so that the kids could go in there and do sensory things to calm down when they were melting down. I was supposed to do these sensory activities with them every morning. I was excited.

Then the rumblings began. The teacher who had had them last complained to me that the advisor from the autism center just wants to catch everyone doing things wrong and had expected her to do these sensory things and so forth with the kids when she had lots of other kids in her classroom to tend to. The principal complained that I invited someone to the classroom without getting her permission. Nobody seemed interested in helping me put things into place. Oh, and I forgot to mention–my classroom had absolutely no books or supplies in it whatsoever. There was supposedly no money in the school budget to get anything new, either. The only things the kids had were things that were bought by me or made by me. I made them folder games where they had to match things using velcro and I bought them toys to help them learn their letters and blocks so they could practice counting.

And the children did well. Although they couldn’t speak, I could tell some of them could do things like count. One child would push blocks away two at a time when I asked him to count. According to his IEP, to the principal and to his parents, however, he was incapable of doing anything. This same child would imitate any hand sign I made. He also would blow kisses when he was ready to be finished with something. I taught him the proper sign for I Love You and he picked it up right away.

The occupational therapists observed me in the classroom. They observed me working with the children and seeing how well they were doing. They were quite pleased. In the meantime, the classroom became dirtier and dirtier because the janitorial staff never cleaned it. There were graffiti and gang signs in the bathroom and they were never cleaned up. The principal never visited my classroom. When I was supposed to be observed, she observed me putting attendance into the computer while the children were in PE and made something up for the observation sheet.

Then it happened. One day I was holding one of the children’s wrists to help him make a letter and he pulled the pencil the other way… and spontaneously began writing his name. I found this child could write other things as well in this manner. I never guided the child’s hand–in fact, I was trying to get him to move in a different direction so that he could do what I wanted him to do. One day he wrote something in this manner about when he was in first grade and how he had behaved. I asked his caretaker when the caretaker picked him up from school. The caretaker confirmed the story. As far as I was concerned, that settled the fact that he had written this himself because I knew nothing about this child’s past whatsoever.

The principal, however, didn’t like it. She called me into the office and told me she was too busy to deal with “this foolishness” and that she wanted me to “stop lying” and admit that the child was not capable of anything. I told her that I wasn’t lying and there was no foolishness. I don’t think she expected that. In any case, she ordered me to stop helping the children write. She told me that I was not to guide any of their wrists at all and they would have to write on their own or not write at all. When I told her the children were supposed to have their hands guided to learn to write on their own she said she didn’t care. She also told me not to close the door in the sensory room, which I did to make sure whichever child I was working with didn’t run out of the room. She implied I closed the door so I could do inappropriate things to the children. I’m lucky she didn’t choose to follow up on that, since even an unfounded charge of sexual abuse could have ruined my life. So I listened to that one and kept the door open even though it ruined my ability to work with the children.

In the meantime, I had an IEP meeting with one of the children’s mother’s. In case you aren’t familiar with IEP meetings, you are supposed to have a meeting with the child’s parent, the general education teacher, the occupational therapist, the speech therapist and the principal. But at this school you usually had the meeting just with you and the parent and then ran around getting signatures to make it look like everyone was there. It bothered me but I didn’t know what to do about it so I didn’t do anything.

Anyway, so I didn’t want to stop helping the children write since it was in their IEPs and anyway I sincerely believed they were communicating. A week later, I was told to bring the child to the principal’s office early in the morning. She made us sit outside her office for 45 minutes. The child began melting down, screaming, stomping their feet. The principal then tried to get the child to write for her. When she was unsuccessful, she said that was proof I was lying. I said that she had disrupted the child’s routine and made him sit for a long period of time in a strange place so he didn’t cooperate. She sent me back to the classroom and then gave me minutes of the meeting that left out anything that I had said that interfered with her opinion.

Soon after that, I was invited to another meeting. This time the child’s parents were there. The parents said they were “disturbed” by what I was saying their child could do. Mind you, they had bene invited to see the child in the classroom and had never shown up. They said I was a devil worshiper who was corrupting their child. They said I was just like someone they had fired because she had left the child in a hot car with the windows rolled up. They said I was dangerous to the child and they wanted him removed from the classroom.

For some reason the child was called to this meeting and he tried to come sit with me and his parents yelled at him to get away from me. The principal then said the child would be put back in the other classroom–the classroom where he had been ignored all the previous year. I finally lost my temper and yelled at them that they were the ones who were dangerous to their child because they were interfering with his ability to get an education. They said, bemused, “But we love him.” I said, “No, you just think you do.” The father told me, “Get away from my wife with your strong words. I don’t want you to hit her.” They took the child and left, but not before commenting that he had the mentality of an infant and couldn’t possibly be capable of anything.

The principal was so angry at me for having lost my temper, and as usual with me and fight mode, I was coming out of the anger phase and into the depression/self-hatred phase, which didn’t help me stand up for myself one bit cause I could barely hold back the tears. The principal said she was afraid the parents would sue, and my thought was, let them. Let them sue and tell a judge, we’re suing because this teacher says my child can learn and we want the teacher to babysit instead of teaching. But I was already too worn out for any more fighting so I kept my mouth shut for once. Anyway, the principal made me go to a meeting with the superintendent. I had to sit out in the hall for half an hour while she told him G-d knows what. When he called me in he told me how he’d never had any trouble with me in the past but if I was saying the child wrote things that I wrote, that was wrong. I told him firmly I was not doing that. He said I should have communicated my concerns to the principal, but that one backfired because I showed him a copy of a letter I had sent the principal the week before about my concerns about this situation. The end result was I was warned not to lose my temper again in front of parents if I wanted to keep my job. I contacted the occupational therapists who had seen me working with the kids, but they wouldn’t stand up for me either because they didn’t want to get involved in anything controversial.

For the rest of the year, the principal tried to make my life miserable by entering the classroom at times she knew the kids weren’t there and berating me about the fact that they weren’t there and warning me she would write me up for imaginary infractions and so forth. I began locking my door when the kids weren’t in there so that I’d have some advance warning that she was coming, but my spirit was pretty broken. Soon, I’m ashamed to admit, I gave up altogether. I let the TAs take the kids to the other teacher’s classroom and let them watch movies all day so I could just sit in my classroom without them. I used the time to work on my writing. I felt horrible knowing I wasn’t doing my job, but actually doing what I was supposed to do hadn’t worked out so well.

Oh, and the child that I was so “dangerous” to got up one day, walked past his new teacher and four TAs who were not paying attention because they were on their computers doing something, and walked out of the classroom. He only went as far as the schoolyard, thankfully, but when I found out that the only reason the adults knew he was gone was because another child told them he had left, I couldn’t help wondering who was really dangerous to him.

I saw him one more time when we went on a class field trip in combination with the other class. We stopped at Burger King and the TAs went to get the kids food. The child tapped me on the shoulder and made the American Sign Language sign for “eat.”

You can’t tell me he wasn’t communicating.

That story is just a small sample of the things that went on in that school. The reason I’m telling it now is because this is autism awareness month, and this story shows what happens when an entire community lacks the awareness that autistic people still have the capability to learn. It shows that when the status quo is stuffing these children into a tiny room so that they can be put out of the way, teachers who actually teach become a threat to the system.

To this day, I still have my doubts about facilitated communication like I was doing. The research I did afterwards told me this often happens and the jury’s out on who is really communicating, and it’s possible I had been lying to myself. But that’s a little beside the point. The point is that I was the only one trying to work with these children, and everyone else was too burnt out or too scared or too ignorant. The child’s parents’ attempt to stand up for him was all backwards and nobody would stand up for me.

For a long time, I felt I failed these children because I was unable to keep teaching. It’s like my problems and the grave injustices being done at that school clashed. Because of the way I handled anger at the time and my addictive pattern of rage –> depression –> keeping quiet –> rage, I couldn’t stand up in any effective manner. Not for them and not for me. The depression never really went away that whole year and in some ways, yeah, my spirit was broken or I allowed it to be broken and at the time I blamed myself for that which made the depression worse.

I don’t like remembering any of this or talking about any of it because like I said, I don’t want to be a victim or sound like one, and because after all these years I’ve just accepted that me and the public school system don’t mix. I still want to help the autism/Aspergers community, but my path is different now. I don’t have the stomach for public school politics. I have never been able to follow stupid orders, and never been able to put aside what I know is right to make an ignorant person feel intelligent. I’m learning that I’m not always right and that stubbornness doesn’t serve me all the time, and I’m learning to pick my battles, but I just didn’t have the stomach then to do what was asked of me and I don’t know if I would now. And even in a saner school environment my problems with authority would probably get in the way. So I choose to be an advocate. I will go into a public school again someday–not that school, obviously. This time I plan to do it as a guest speaker, as a person who is there to talk to parents who want to help their children, as a respected authority on autism because I live with Aspergers syndrome and not as someone who is distrusted and viewed as insane because I know children with autism can learn.

There’s so much more to say about this that I haven’t said, but I think that’s enough… I just hope that we can raise the right kind of awareness about autism cause I’m still hearing too much about what autistic people supposedly can’t do and not enough about what they potentially CAN do.

This month my blog is even more important than usual because April happens to be Autism Awareness Month in the United States. Now, I’m not really quite sure what that entails, in the sense that  don’t know if there are any specific events planned around autism or anything like that. I’m sure that part of the month will include groups that are pro-cure trying to make everyone “aware” of how debilitating autism can be so that we can donate money to find a cure.

As you probably have guessed, I find this offensive. Yes, some types of autism can be very debilitating. There are non-verbal autistic children who never master any type of communications system. Sometimes these children get big enough that they can hurt someone while in a violent rage brought on by not being able to explain what they want in any way, shape or form. There’s no doubt that this kind of existence is stressful for both the caregivers and the person suffering from autism. However, that life…is still a life, so even in that case I’m very loathe to say that it “shouldn’t” exist because it’s a short step from there to “let’s put them out of their misery” or “let’s abort this fetus because a genetic test told us our child might have autism and we don’t want to take the risk.”

I personally think the cure, if you want to call it that, that we should all be looking for is how to help people with autism be as high-functioning as possible.  As I understand it, early intervention helps a lot. The more stimulation and exposure to different ways of teaching a young child gets, the more likely he or she is to speak, learn and be able to keep up with non-autistic peers. This is true for Aspergers as well as classic autism–although Aspies don’t have the language delay, they do have other cognitive and social delays. Although I wasn’t diagnosed until adulthood, I guess part of the reason I’m as high functioning as I am is because I got plenty of intellectual stimulation, even if nobody knew I had Aspergers. I was always surrounded by books and educational toys and given lots of opportunities to socialize, even if I never did really learn how to socialize properly.

The problem with early intervention, of course, is that it takes money. Regardless of how “severe” a kid seems to be (and I hate that word because it suggests, at least in my mind, that some kids need to be “fixed” while others are okay as they are), it’s going to take money to give them the intervention they need. They may need speech therapists or other therapists. If the parents work full-time and/or don’t feel capable of interventions on their own, they may need tutors, nannies, or aides. Not only does it take money to buy all these things, but it takes money to run autism centers that are capable of telling parents that they need to do these things. In some places, parents might not have access to accurate information about what they need to do, and in some places they might not be able to afford it.

So I guess what I want to say in this first Autism Awareness Month blog, is that I hope people stop donating to causes that offer “cures” for autism and instead donate to causes that help people with early intervention, if there is any such thing. If there aren’t, there should be and I’ll have to add that to my ever-growing list of ways I hope to change the world once I get my act together. If people in poor areas can get better access both to information and services, their kids have a better chance of functioning in the world. And I really think that’s what it is all about. The reason the “cure” movement offends me is because it seems to be focused on making sure everyone is “normal” and nobody has autism. I think people with autism need interventions so that their autism doesn’t cause them to become non-functional or less functional than they can be. But I don’t think the point should be to eradicate their autism–it should be to allow them to function in the world as a person with autism.

Happy Monday

This blog is probably gonna be short. I’m wiped out because last night I stayed up later than I should have. Just as I was about to lie down, I got an email from one of the sites I work for asking if I would write a post for them quickly that another writer had defaulted on. The post looked pretty easy and I figured since I’d only worked half a day and not met my usual daily goal, I’d take it. Besides, filling in at the last second helps my reputation on these sites so that I’m more likely to get work later. It was easy–it was about choosing toys for your dog–and I did it in about 20 minutes and my payment for it was waiting for me in my inbox when I got up this morning.

However, between a near-meltdown that I averted today and pushing myself fairly hard to get caught up with work, I am exhausted. That extra hour of sleep that I didn’t get seems to have made a huge difference to me.

Anyway, what I wanted to share tonight is the process I’ve devised to help myself stay focused and on track with work. I actually had opportunity to allude to this system in some of the articles I wrote today, which were about financial management, and I’m quite proud of it.

I’ve put myself on a system where I get rewarded every day for stayin on track and trying as hard as I can to meet my daily goals. I have to do certain things every morning when I get up–physical and psychological exercise–to get my day started right, and I have to practice basic self-care, and I have to work from 9:30-5:30 Sunday-Thursday unless I’m physically ill or have a doctor’s appointment or something during part of those hours. If I do everything I’m supposed to do for the day, I get to take a $5 bill out of my Monopoly set. I also give myself bonuses if I went beyond expectations–for example, if I worked extra hours to meet my daily goal or exceeded the goals on my to-do list. Or, as happened today, if I overcome negative behavior patterns, keep going, and meet my goal.

This morning I was in a pretty bad mood for a couple of reasons (and I’m sure being slightly sleep-deprived didn’t help.) This usually happens once every couple of weeks, usually when I’ve been focusing really well for a week or more. And this past week I’ve done better than ever, meeting my daily goal every day and then some. Then something goes wrong and frustrates me and I melt down, don’t work at all that day and if I’m not careful it can spiral into a week or more of bad behavior so that I don’t earn enough money and can’t pay my bills.

So anyway, as I was saying, I was in one of my bad moods that usually leads to a melt down. I could see it starting to happen. I was upset partially because I didn’t get into the next round of the screenwriting competition I entered, but more because a script I read that was quite transphobic (using the “chicks with dicks” meme as a running joke) and was the only script in the whole competition that I really thought was sub-par did. I thought maybe the reason I didn’t win was because my script treats the issue of being transgender with sensitivity instead of mocking transgender people, and that led to a spiral of negative thoughts about how bigotry is going to make it impossible for me to get where I want to go. And I was talking to a friend who suggested some things to try with the best of intentions but they were along the lines of not doing it as a TV series so I felt stubborn and rebellious, and before I knew it I was arguing with myself about whether I wanted to work and heading towards a meltdown.

Well, as I said, I’m used to this, but this time I decided I wasn’t going there. It’s kind of complicated and beyond the scope of this blog to explain exactly what I did, but the short version is I told myself NO, actually did what I needed to to calm down and got back to work, and when I felt like going off-track to explore why I was feeling rebellious today I again told myself NO and promised myself I would think about that during lunch.

During lunch I did do some thinking and talking with myself and figured out what was going on with me and then I took the extra step of posting in my support group about it in order to keep myself accountable. And then all afternoon I was able to focus by thinking about the reward I was going to earn tonight and that I was going to get to be proud of myself for getting back on track. At the end of the day, I had earned $119.23 of the $120 I was supposed to earn today, which I think is pretty damn good considering the near meltdown and all. So I actually got a bonus from my Monopoly set today.

(By the way, in case anyone was wondering, the Monopoly money does serve an actual purpose beyond being a reminder that I did well. When I get paid on Fridays, the Monopoly money gets traded in for real money and I can either deposit said money in my rewards account or use it to buy myself a present. Last week I used it to get a haircut.)

So that’s my story today, and somehow in the middle of that near meltdown I developed a headache and backache that haven’t gone away yet, so I suspect I need to sleep.