Two days ago, I participated in a program called Reactor Room. I spoke in front of a panel of business leaders, social workers, and psychologists about my talents, skills, and experience in the workforce. I also talked about my current projects. Then I took questions and comments aimed at helping me to develop all of that into a successful career. It was nerve wracking, and I spent all day yesterday recovering, but it was a very positive experience overall.
Reactor Room is run by Dr. Heidi Stieglitz Ham as part of Spectrum Fusion, which is her vision of a community of adults on the autism spectrum who support each other and serve the global community with our abilities. She believes that we all have the potential to do great things, and I agree completely. That’s why I’m so glad to be a part of what she’s doing.
Unfortunately, some people don’t see autistic adults that way. The other Reactor Room participant is a writer/editor who is seeking opportunities in that field. A member of the panel he spoke to by the name of Denise Hazen voiced opposition to what Dr. Ham is trying to do, saying that my fellow Reactor Room participant will never find a job in writing. She thinks that Dr. Ham encourages unrealistic goals, helping autistic people find employment in their area of interest.
So what does Denise Hazen think is a realistic goal for adults on the autism spectrum? Manual labor. She employs them to produce trinkets that she sells in her program called Aspire Accessories. In return, they get training in a variety of retail-related skills and “fair wages.” Does that sound like minimum wage to you? It does to me.
And the stuff they produce isn’t cheap. Check out this leather, Texas-shaped keychain. Normally, you would expect a keychain to cost, what, about $5? Maybe $10 if it’s really nice? Well, this one costs $20. Sure, each one is hand made (by someone whose boss thinks they’d be lucky to have a job collecting grocery carts), but $20? Seriously?
Denise monopolized the conversation in order to promote her business, because that’s what she came for. She wasn’t there to help autistic people.
There are many voices in the autism community talking about how we have a hard time being understood by non-autistics. Mine is among them. But it recently really began to dawn on me just what the differences in our ways of thinking entail. And as I ponder this, it seems to me that I’ve had difficulties understanding non-aspies in the same way that they misunderstand me.
Unlike many aspies, I’m pretty decent at socializing. It tires me horribly, but I can get into “social mode” and make it through a social function, coming off to everyone there as “normal,” maybe even delightful. (I’m pushing it, I know. :p) But this is a persona based on imitating what I’ve observed as appropriate and entertaining behavior in others. It’s a mask made of my own genius.
On a much more fundamental level, the processes that take place in my mind as I take in information are very different from those in others. I don’t feel the way others do about things. I’m not patriotic, I’m not a sports fan, I’m very nonreligious, I’m not a feminist or an ally, I’m not outraged by the injustices that people bring up every day on Facebook, and there are many other things that seem to define a normal way of thinking that are totally alien to me. It’s as if I was born on another planet, and I’ve always felt that way. My sisters could tell you about the years of my childhood when I fantasized that I’d been born on Mars. Even back then, I picked up on the fact that there was something different about me.
And even though there are also differences in the way even individual aspies think, feel, and process information, I think we all know what it feels like to be different. In my opinion, the best way to begin fostering understanding between us and non-autistics is to work to understand them. It might make an interesting academic study.
I once went to a counselor about some mental/personality issues I was dealing with, and she told me to look into this thing called “indigo children.” I looked into it, and do you know what I discovered? I am a wizard! I have supernatural powers and I am omniscient! I can leap tall buildings in a single bound! Obviously, that’s not true.
This garbage was recently brought to my attention, and I started refuting the bullet list point-by-point to my girlfriend when I realized I should post it here instead. First I’ll give you an overview of it.
Since the 1990’s, a growing number of medical professionals have dismissed the traditional ADHD diagnoses associated with long-term social and behavioral health problems, and have instead sided with their parents who insist that they possess supernatural powers.
I understand parents wanting to believe their children have no flaws and are special snowflakes for no other reason than that they are their babies, but that doesn’t justify eschewing real science and medical knowledge in favor of nonsense. The culture in the United States encourages people to value superstition and intuition over logic and reason.
So anyway, on to the bullet list.
How to recognise an Indigo Child
What are the behavioral patterns of Indigos?
They are born feeling and knowing they are special and should be revered.
Nobody is born knowing anything except that it’s frickin freezing outside of a uterus. If you encourage your child to believe he or she should be revered, you are raising a narcissist.
An indigo knows they belong here as they are and expect you to realize it as well.
Don’t even think about trying to help your child learn to get along with other people or get him/her medication so he/she can function in the world. If your child is a stubborn brat, just give him/her everything he/she wants. Then gaze in wonder at the narcissist you’ve unleashed upon the world.
These children are more confident and have a higher sense of self-worth.
These children are narcissists. How many times can I say it? Your child is not better than anyone else, so do not raise them to believe they are.
Absolute authority, the kind with no choices, negotiation, or input from them does not sit well. The educational system is a good example.
Your child is the authority, not you. He’s a wizard, not a narcissist. Bow to his every command.
Some of the rules we so carefully followed as children seem silly to them and they fight them.
We did not carefully follow rules as children. Every child tests limits and disobeys rules. They need boundaries, not magic wands.
Rigid ritualistic systems are considered archaic to an indigo child. They feel everything should be given creative thought.
To a child, ten years ago is the same thing as a million years ago. Children don’t know what archaic means. Not everything should be given creative thought. “Should I look both ways before I cross the street, or should I act like a chicken instead?”
They are insightful and often have a better idea of method then what has been in place for years. This makes them seem like “system busters.”
You mean than. They don’t understand the reason that rules are in place, and because they’re completely selfish, they would rather just do whatever they want. Kids break rules. It’s not a super power.
Adults often view an indigo as anti-social unless they are with other indigos. Often they feel lost and misunderstood, which causes them to go within.
Some kids are introverted. It’s ok. It’s not a superpower. It’s just a personality trait.
The old control methods like, “Wait till your father gets home,” have no affect on these children.
Don’t threaten kids with violence. That opens up a worse can of worms than the one you’re opening with this “indigo children” nonsense.
The fulfillment of their personal needs is important to them, and they will let you know.
You’d better buy that kid every toy he or she wants and let them have ice cream for dinner. If you don’t, you’ll wake up one morning having been turned into a newt. And no, you won’t get better.
There’s another bullet list that could be a whole other blog post, so I’ll just leave this one off here. Check out the link if you want to read some grade-A woo.
Michelle Vines’s new book, Asperger’s on the Inside, is coming out on April 8, which just happens to be Autism Awareness Month. Hurray! It’s not a dry textbook about the clinical definition of Autism. It’s a personal story about her life and how it was affected by her Asperger’s Syndrome.
I’ve spent more time in Autcraft and learned a lot about how things work there, and it is pretty cool. They have different worlds set up for different things, like four separate worlds to build in (two peaceful worlds and two hard worlds), a world for gathering resources, worlds for mini games, quiet worlds where there’s no chat, and more. The resource-gathering worlds reset monthly, so all resources are renewable, unlike in a normal Minecraft world where the resources are still vast but finite.
There are also things you can buy, like commands that heal you, fill your food bar, and repair your equipment. For $2 a month, I have the ability to repair all of my equipment an unlimited number of times whenever I want. They also have one-time-purchase packages that give you a status in the chat (iron, gold, and diamond) and access to other commands. The iron status is $20, the gold status is $50, and the diamond status is $100. With diamond comes the ability to fly and designate up to ten homes, so I really want to get that.
As before, the community is very friendly and helpful, and they keep a close eye on the chat to ensure that any unpleasant interactions are kept to a minimum. I highly recommend it to autistic kids, autistic adults, and their families.
After hearing and reading so much about Autcraft, a Minecraft server for people with autism and their families, I checked out the website and filled out the application to be added to the whitelist. The site said it would take 1-2 weeks for the application to be processed, so I waited. A few days later, I had a message in my email saying I’ve been accepted. Yay! So I followed their instructions and logged in last night.
I received a very warm welcome. The moment I logged in, everyone said hi, and a few people came up to give me some stuff. Then one of the admins showed me around and showed me how to pick a spot to build my house. She also gave me some materials to build my house out of. It wasn’t enough to do as much as I plan to do, but it was a very nice start.
The chat is active and friendly, and I feel like if I need help, I can easily get it. I look forward to exploring Autcraft more and being a productive member of the community. I might also post some screenshots of my house once it’s impressive enough.
I had an insight last night that I’m sure would ruffle a lot of feathers and possibly start a fecal meteorological event in some mixed circles if voiced too publicly or too often.
I’m sure it’s uncontroversial here, which is why I’m writing this post here; at any rate I tend to be of the opinion that while it’s helpful to have NT researchers studying autism & writing about it, the real autism experts are autistic people themselves. The experts among experts are the up and coming adult-diagnosed people who are both trained mental health professionals and also have a lifetime’s experience of being autistic. And it’s incredibly insulting and hurtful for a supposed NT “expert” to tell an ASD person that they’re “NOT” autistic, in their professional opinion. I see this tragedy play out in far too many narratives in the adult with Asperger’s Facebook groups to which I belong.
The real controversial insight I had the other night and mentioned in one of these adult Aspie groups on FB, as a riposte to someone defending the correctness (or at least the practical necessity of) of the “medical model” of (formal) Autism diagnosis (which is indeed required for government benefits, legal protections, etc, because that is how bureaucracies work in general)…I pointed out how gays and lesbians don’t need psychologists/psychiatrists to validate if they’re “really” homosexual or not. THEY KNOW. They know it in their bones, with every fiber of their being. I assert it is the same with the Autism spectrum. We know better than anyone that we are, regardless what someone in a white lab coat with letters after their name may opine about us.
It struck me, the absurdity of the mental image of a hypothetical gay person hoping their shrink will give them the formal “gay” diagnosis…and realized it’s no less absurd for us on the Autism spectrum. Why would any sane person “fake” being autistic? Some of us may be more profoundly impacted than others, on different parts of the spectrum from others, but we’re all on the Autism spectrum somewhere, even if it’s only a handful of traits that don’t fully add up to an “official” diagnosis. I’m very fortunate to live in a white, middle class North American family able to afford my COBRA premiums and use that extended coverage to obtain my Asperger’s syndrome diagnosis in the summer of 2010. This diagnosis was very fortuitous because it helped me save my new job (thanks ADA!) about 6 months later. This summer marks my 5th year in that job and I’ll be honored by my local government authority that is my actual employer at the end of this month.
My attitude towards the self-diagnosed is to believe them and grant them the benefit of the doubt. It doesn’t take very long for the average Aspie to relate key elements of their life story in a few paragraphs. I’m reasonably well-red, having engaged in a lot of self-study after my formal DX. I know tell-tale signs to look for, even beyond my own personal parameters (i.e. eye contact isn’t a big deal for me, but I know it is for many Aspies). Sometimes the length/long-windedness of a Facebook post is enough to click the “Aspie recognition” switch in my head. I realize government bureaucracies can’t be run on the basis of what must strike NT researchers as highly subjective approaches…how scientific is “Gaydar”, after all? Yet I feel like I have my own built in “Autisticator” and am pretty decent at picking out my own tribe through behavioral observation “in the wild”. We need more ASD people to get credentialed in the Mental Health profession to act as advocates for the undiagnosed who are suffering and in need of possible government benefits and legal protections that would otherwise be denied these disabled people owing to lack of official documentation. Gay people don’t have to prove they’re gay to avail themselves of non-discrimination protections where they exist. It sounds absurd on its face. This absurdity carries over in parallel and underscores the limitations of the medical model for Autism and autistic disability. It’s less like a physical infirmity and more like a neurological mode of being that differs from the norm. It’s really shameful Autistic people have to jump through barriers erected by skeptical, “old school” NT mental health professionals, some of whom don’t even accept Asperger’s as a real diagnosis, or consciously or unconsciously cling to Leo Kanner’s outdated, narrow views on autism, restricted to only the most extreme cases. This needs to change and is part of the Neurodiversity struggle for our Civil and basic Human Rights.
From 9th – 11th grade, I was very self-conscious about looking and smelling nice outside of my domicile (I cared about this while at home too, but not as much as outside it). So much so that it played a significant role in me missing over 2 semesters of school from the latter half of 8th grade through 11th grade (a period of 4 ½ years in my case). This resulted in me having to take an extra semester of high school in the fall of 2008 before I could officially be finished with school. (There were other factors that contributed to such extensive absence from school, but those are posts for another day.)
Thankfully, since then, I’ve overcome that self-consciousness thanks to various coping methods. The most significant being that I no longer worry near as much as I used to about what people may or may not think about my level of cleanliness. While still maintaining an appropriate degree of cleanliness by my own standards and the standards of most others I know.
To this day, the best I can say as to why I felt this way for so long was due to at least one of many facets of my Asperger’s Syndrome.
Since at least my high school years, when it comes to mediums of communicating with people, I’ve strongly preferred communicating via Facebook, texting, and email than via any other medium. This is because I feel much more comfortable communicating via those three mediums than via any others, notably talking on the phone and video chatting. Plus, it’s also easier for me to communicate via Facebook, texting, and email than via other mediums.
This stems from real time communication, e.g. talking on the phone, video chatting, etc, being more difficult for me than non-real time communication, e.g. communicating via Facebook, email, etc. Something many people with Asperger’s Syndrome (like myself) have in common. With mediums like Facebook, texting, and email, I have more time to formulate a response. Also, in real time communication, I feel more rushed to respond when asked something, which can often lead to me having difficulty articulating my thoughts. This is partially (though not the main reason) why I tend to do more listening in gatherings with other people than talking. Unless a topic of interest comes up.
Experiencing less sensory input from other’s emotions is another reason I prefer the mediums of communication that I do. That’s not to say I don’t like it when people express their emotions. Far from it. I’m just more affected by other’s emotions than non-Asperger’s people.
I don’t know who came up with token theory, but it’s a brilliant analogy for how we find many environments and situations draining and why they cause meltdowns. Every aspie (and possibly every non-aspie, but we don’t care about them right now) has a certain number of tokens at maximum. When we do things we’re uncomfortable with, we spend tokens to deal with it. When we run out of tokens, we can no longer cope, and we have a meltdown or have to get away from the situation any way we can. It can mean closing our eyes, shutting our ears, singing loudly to ourselves, or all of those things and more. Spending time doing things we are comfortable with (or obsessed with) allows us to regain tokens. We can even get to a point where we have hit our capacity and desire to do something draining for a little while.
Throughout my childhood and youth so far, I’ve developed a talent for social interactions. I use humor to put people at ease and appear to be the life of any party I go to, which is hardly any. I found, though, that when I would be alone again, I would find myself feeling very emotionally drained, and I didn’t understand why until I looked at it in light being an aspie with a set number of tokens. Social interaction can be fun, but it drains me very quickly. The same goes for any situation where I’m uncomfortable. Hunger, sleepiness, having to go to the bathroom, being confined, and frustration drain me quickly and impair my brain functions. I get agitated easily and lose my ability to do things like type and not bump into things. If I don’t have a chance to rest and regain my tokens, I become a very different person who isn’t easy to get along with.
Fortunately, I recover fairly quickly. A few hours on my computer playing games is generally enough to bring me back from the brink of a meltdown to full tokens again. I’m lucky enough to know what recharges me. Not all aspies understand how they tick enough to know what to do when they feel overwhelmed, and even I am not always aware of when my tokens are being drained until they are very very low. It’s a hard balance to maintain, but it’s a war we aspies fight every day of our lives.