Labels

This was a post on Asperger Square 8. I hope they don't mine me posting it here, but it's something I really want to comment on.

I am Joe’s (High) Functioning Label. I serve many purposes for people who like to discuss Joe. What I do for Joe himself is less clear, depending often on Joe’s Point of View. I attach myself to Joe’s Autism Label during the Diagnostic Evaluation, which can occur at any point in Joe’s life, though early childhood is best, if Joe desires to be taken at all seriously. Bonding tightly with Joe’s Autism Label, I have the power to make Joe’s Autism “mild,” or less real. (Please note: Though I am not an official part of the diagnosis, this does not make me any less real.)
In discussions of Joe, you may hear that Joe is Notlikemychild (NLMC). NLMC is simply another name for High Functioning Autism. Joe, like other persons with this form of Autism, does not self injure. Joe may have a history of suicide attempts. Joe may have damage to vital organs from years of alcoholic drinking. Joe may have scars from burning or cutting himself. These do not count. Joe is High Functioning; therefore these things have nothing to do with Joe’s Autism. Joe should really know better. Though he may have head-banged, bitten himself and pulled his hair out as a child, Joe no longer does these things (at least not that anyone knows about).

Joe has self care skills which are adequate. Joe’s fear of eviction due to his inability to throw anything away is a result of Joe’s Laziness, not Joe’s Autism. Joe’s fears of legal repercussions due to the bills he forgot to pay are signs of Joe’s Irresponsibility. People with Real Autism lack self care skills on a more fundamental level. Joe remembers to go to the toilet almost every time he should. Joe prepares meals for himself daily. Please do not ask me to be more specific. Joe’s Nutritional Deficiency is not my fault.

Joe may communicate well by typing. As Joe’s Functioning Label, one of my responsibilities is to ensure that Joe not use this skill to speak about Autism. I sometimes fail at this, and in these cases Joe may be subjected to harsh criticism, ridicule or even threats for having forgotten that he is NLMC.

Sometimes, I prevent Joe from needing accommodations in school, and later in the workplace. Often, Joe will be unemployed as an adult. Sometimes he is underemployed, working at low paying jobs which do not engage his interests or make use of his skills. Joe may misunderstand directions or find himself unable to break inefficient patterns, even when warned by his employer. Joe may have difficulty relating to co-workers, quickly finding himself without allies. He may misinterpret the culture of the business he works for, making remarks which are “inappropriate” or failing to appear at the Optionally Required Social Event.

When Joe is fired, I am there to remind him (and everyone else) that this is his own fault. When Joe protests that the employer’s failure to accommodate his Autism may be at least a part of the problem, everyone looks at me in disbelief. I am the evidence Joe needed nothing. I am Joe’s Functioning Label.

What is this saying? Well, it's actually really simple.

I have high functioning autism. That label is actually a double edged sword. When I work with people, interact with people, or anything of the sort, and they're aware of my "high functioning autism" label; the way they view me is based on circumstances and changes frequently.

When I go for a job interview (or when working a job like I did at Hartford), and they know, they treat me like I'm an idiot because of it. I have autism. I must not be able to function without help at all times. This is not the case, of course.

That said, once I screw something up, I get the exact opposite: How can you screw up something so simple? You're "high functioning!"

This is the main problem with having a label like this. I am not my label. I have my own special set of strengths and weaknesses. Only by getting to know me will you get to know them. If you don't try, or I don't try, I'm set up to fail no matter what.

We need to move past these labels and just learn to help each other work toward common goals. Like mine, of being a functional member of society. That's all I want.

Discrimination

Something I've come to learn very quickly is how fast people discriminate against "invisible" disabilities.

Asperger's Syndrome is usually coupled with a high IQ. When mine was tested, back when I was seven, it was 140. I was immediately put into gifted classes and have been treated as such my whole life.

Around two months after I came to realize I had Asperger's (a story for another day), I came out on a blog I'd been on for the better part of eight years. I talked about not being able to find a doctor to get a clinical diagnosis. Rather than support, I was attacked very opening and very heavily. Here's a sampling of the responses I got:

• "Maybe you should meet some people who really suffer from Autism, as well as their families and then maybe you will understand the disrespect that you are showing by continuing this mockery."


• "My only conclusion from this and your job history is that all you want is an excuse, other than yourself, for all the jobs that you have lost. Well Autism would fit the bill… if only you actually had it."


• "It is absolutely insulting that you would lie about having Aspergers Syndrome. It is insulting to those of us trying to offer you advice and insulting to the community of people who are affected in their daily lives by Autism and Aspergers."


• "It seems, and I am not the only one who thinks so, that you are now using aspergers syndrome as yet another way for you to NOT have to take responsibility for your own actions."


• "The reason this issue is so important is that Aspergers is a complicated disorder and you are mocking it with your "Aspie Power" cheer. I think that is wrong when there are people who genuinely suffer from it."


• "...someday he'll be friendless and alone because nobody will want to be around him anymore."


• "By claiming to be autistic without a doctor's diagnosis, you're spitting in the face of all the little autistic kids that already have one."

There were many more, but you get the idea.

I lost a lot of friends who thought I was looking for an excuse. They thought it was impossible for me to be gifted and have a mental handicap.

When this first went down, it was VERY difficult for me to deal with. Seeing friends you've had for almost a decade turning on you isn't easy for anyone. As of my diagnosis, I now understand that I was right from the beginning and these people were either manipulating me or just plain jerks.

I know I'll never escape this level of discrimination, but at least I feel vindicated over one of the most extreme cases I'm ever likely to go through.