I Am Jack's Functioning-Level Label
I stumbled upon the following cleverly-worded piece today. It was written by a blogger who calls him(orher?)self simply "BEV". I had to re-read it several times as the narrative character's point of view would confuse me occasionally, but I got the bigger picture and it definitely struck a huge nerve. Then, I re-copied it, replacing "Joe" with "Bailey", my name. I have also changed some of the particular examples to actually relevant ones ---which is, in keeping with the theme, to avoid accusations of "exaggeration", etc--- as well as other minor edits that I think help to clarify my interpretation.
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.
Try AGAIN:
I am Bailey’s [High] Functioning Label. I serve many purposes for people who like to discuss Bailey. What I do for Bailey herself is less clear, depending often on Bailey’s Point of View. I attach myself to Bailey’s Autism Label during the Diagnostic Evaluation, which can occur at any point in Bailey’s life, though early childhood is best, IF Bailey desires to be taken at all seriously. (And since Bailey did NOT receive this evaluation in early childhood, consequently, Bailey can NOT be taken at all seriously. No, since none of the MANY doctors Bailey DID visit in early childhood could define "ATTENTION-incapable-unless-of-course-subject-of-focus-happens-to-be-current-OBSESSION-of-Bailey's-HYPERACTIVE-mind-though-not-evident-by-her-sometimes-hour-long-stints-of-ANTISOCIAL-silence-in-deep-trance-before-sudden-inappropriate-COMPULSIVE-unsurpressable-outbursts-of-talkativity-before-seemingly-unprovoked-tantrum-of-IRRITIBILITY", due to the lack of awareness in the late 80s.) Bonding tightly to Bailey’s Autism Label, I have the power to make Bailey’s Autism “mild,” or even 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 Bailey, you may hear that Bailey is Notlikemychild (NLMC). NLMC is simply another name for High Functioning Autism. Bailey, like other persons with this form of Autism, does not self injure. Bailey MAY have a history of over-the-counter decongestant&antihistamine&ibuprofen&acetaminophen combination overdoses, purely ridiculous breath holding for copious lengths of time, and other suicide attempts. These do not count. Bailey is High Functioning; therefore these things have nothing to do with Bailey’s Autism. Bailey should really know better. Though she may have head-banged, bitten herself, pulled her hair out, thrown destructive temper tantrums at home or in public, and physically punished herself and others as a child, Bailey no longer does these things (at least not that anyone knows about).
Bailey has self care skills which are adequate. Bailey’s fear of eviction due to her inability to throw anything away is a result of Bailey’s Laziness, not Bailey’s Autism. Bailey’s fears of her father's disappointment due to the tasks she forgot to complete or avoided are signs of Bailey’s Irresponsibility, or even Deliberate Non-conformity. Sometimes not showering for days at a time is also a sign of Bailey's inherent Laziness & Disregard for Societal Norm, not her acute aversion to the sensation of water which can be more unmanageable if heightened by multiple stressors also concurrently present. People with Real Autism lack self care skills on a more fundamental level. Bailey remembers to go to the toilet almost every time she should. Bailey prepares meals for herself AND EVEN ALSO for her boyfriend daily. In fact particularly for her boyfriend. In fact it might even be fair to say that did she not feel responsible for the nutrition of someone else, she might forget to eat. Please do not ask me to be more specific. Bailey’s Nutritional Deficiency is not my fault.
Bailey may communicate well, very well, especially by typing. As Bailey’s Functioning Label, one of my responsibilities is to ensure that Bailey not use this skill to speak about Autism. I sometimes fail at this, and in these cases Bailey may be subjected to harsh criticism, ridicule or even threats for having forgotten that she is NLMC.
Sometimes, I prevent Bailey from needing accommodations in school, and later in the workplace. Often, Bailey will be unemployed as an adult. Sometimes she is underemployed, working at low paying jobs which do not engage her interests or make use of her skills.Bailey may misunderstand directions or find herself unable to break inefficient patterns, even when warned by her employer. Bailey may have difficulty relating to co-workers, quickly finding herself without allies. She may misinterpret the culture of the business she works for, making remarks which are “inappropriate” or failing to appear at the Optionally Required Social Event.
When Bailey abandons a task or leaves a job she no longer feels the confidence to continue dragging through while others seem to glide on by, I am there to remind her (and everyone else) that this is her own fault. When Bailey protests that the employer(or teacher, or friend, or family member)'s failure to accommodate her Autism may be at least a part of the problem, everyone looks at me in disbelief. I am the evidence Bailey needed nothing. I am Bailey’s Functioning Label.
I also posted all of the above into my own livejournal and then added the following. I guess it could serve as an introduction here as well since I guess I have never really posted one:
This is still all very out-of-context to anyone who either doesn't know me very well (acquaintance), has never been around me outside of the environment they met me in (work, school, party), or didn't know me well before I began high school in 2000. Particularly the latter.
The person I am in most public settings (work, school, party) is as complete 180º opposite as possible from the "me" that I previously wasn't at all reserved about being 24 hours a day until the day I decided to start "trying".
I don't remember what set it off, if it was conscious or not. I just know I randomly experimented with "trying harder" to be "acceptable" when I started the first day of high school. I had a clean slate. There were still hundreds of people in the hallways who knew exactly who I was by how I had always behaved before that. HOWEVER, there were hundreds more who DIDN'T catch on. And miraculously, many of those new people actually LOVED me. Finally, I was "allowed" to be the girl you "wanted" to be around, not the girl you had to APOLOGIZE for BRINGING around.
I was only 10 when I moved to a place where I knew NO ONE for the first time ever. And it was on the first day of school THAT year --after I was again stared at, excluded, and bullied-- that I accepted what I thought would always be my fate. That I wasn't "allowed" to feel like everyone else. To be like everyone else. To experience what everyone else gets to. The PRIVILEGE of being "okay" was never going to be mine. So once I'd come to that conclusion, I was free. Free to be "me". Free to talk too much and walk funny and cover my body in colors and textures that felt good. God bless the precious few people who appreciated that about me. It takes a VERY mature person to APPRECIATE individuality as a child.
Anyway, when I discovered that I actually COULD have the same privilege that everyone else had, that I WASN'T chosen at birth to suffer throughout life like Jesus or something, I started doing everything in my power to retain that privilege.
Though I have since been blessed beyond words with the most deeply meaningful friendships and life experiences, the REAL pain started then.
Just as BEV expresses above, it is almost impossible to receive acknowledgement of very VERY real and widely encompassing handicaps if you excel at anything. In the matter of a year, I became the social equivalent of marathon winner with two prosthetic legs. If I could accomplish that, I SHOULD, then, logically, be able to accomplish ANYTHING, right? Unfortunately for everyone (friends, family, employers, coworkers), but especially me, it does NOT work that way.
While there are skills that I have picked up and even skills I began with that no one else even possessed at very early ages, there are some I have spent my life in great emotional/mental/psychological anguish lacking, that, at this point, though I have truly struggled, I fear I never will learn. And the reason I believe I will never learn them is that it has been my experience that those who DO have them will always write those of us who DONT have them off. And the people who DO have them HAPPEN to be the ones in charge. The rule writers. The managers. The grade givers. They will always diagnose my legitimate disabilities as willfully-overcomable traits such as laziness or disinterest, unacceptable & odd.
There are things that I am good at and I am excellent at them. I can do them flawlessly, with accuracy and precision, everytime, ALL the time, for hours and hours and hours and hours at a time. Then there are things that I am bad at. I have always been bad at them. Not only bad, but hopeless, not only hopeless, but helpless, not only helpless, but downright incapable. It's not an excuse; it's an inherent inability. If you would not insult a tetraplegic by suggesting that if he can think and see and speak he should be responsible for walking, if he is officially handicapped, why is it okay to insult me in the same way?
I simply do not understand how I will ever get to do what I am good at if it is required for me to FIRST do what I am bad at. Will ANYONE ever give me the opportunity? How do I defeat all of the Catch 22s that stand between me and what I could be? When will it stop being about what I SHOULD be and start being about just HOW much I really truly COULD be?
.
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.
Try AGAIN:
I am Bailey’s [High] Functioning Label. I serve many purposes for people who like to discuss Bailey. What I do for Bailey herself is less clear, depending often on Bailey’s Point of View. I attach myself to Bailey’s Autism Label during the Diagnostic Evaluation, which can occur at any point in Bailey’s life, though early childhood is best, IF Bailey desires to be taken at all seriously. (And since Bailey did NOT receive this evaluation in early childhood, consequently, Bailey can NOT be taken at all seriously. No, since none of the MANY doctors Bailey DID visit in early childhood could define "ATTENTION-incapable-unless-of-course-subject-of-focus-happens-to-be-current-OBSESSION-of-Bailey's-HYPERACTIVE-mind-though-not-evident-by-her-sometimes-hour-long-stints-of-ANTISOCIAL-silence-in-deep-trance-before-sudden-inappropriate-COMPULSIVE-unsurpressable-outbursts-of-talkativity-before-seemingly-unprovoked-tantrum-of-IRRITIBILITY", due to the lack of awareness in the late 80s.) Bonding tightly to Bailey’s Autism Label, I have the power to make Bailey’s Autism “mild,” or even 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 Bailey, you may hear that Bailey is Notlikemychild (NLMC). NLMC is simply another name for High Functioning Autism. Bailey, like other persons with this form of Autism, does not self injure. Bailey MAY have a history of over-the-counter decongestant&antihistamine&ibuprofen&acetaminophen combination overdoses, purely ridiculous breath holding for copious lengths of time, and other suicide attempts. These do not count. Bailey is High Functioning; therefore these things have nothing to do with Bailey’s Autism. Bailey should really know better. Though she may have head-banged, bitten herself, pulled her hair out, thrown destructive temper tantrums at home or in public, and physically punished herself and others as a child, Bailey no longer does these things (at least not that anyone knows about).
Bailey has self care skills which are adequate. Bailey’s fear of eviction due to her inability to throw anything away is a result of Bailey’s Laziness, not Bailey’s Autism. Bailey’s fears of her father's disappointment due to the tasks she forgot to complete or avoided are signs of Bailey’s Irresponsibility, or even Deliberate Non-conformity. Sometimes not showering for days at a time is also a sign of Bailey's inherent Laziness & Disregard for Societal Norm, not her acute aversion to the sensation of water which can be more unmanageable if heightened by multiple stressors also concurrently present. People with Real Autism lack self care skills on a more fundamental level. Bailey remembers to go to the toilet almost every time she should. Bailey prepares meals for herself AND EVEN ALSO for her boyfriend daily. In fact particularly for her boyfriend. In fact it might even be fair to say that did she not feel responsible for the nutrition of someone else, she might forget to eat. Please do not ask me to be more specific. Bailey’s Nutritional Deficiency is not my fault.
Bailey may communicate well, very well, especially by typing. As Bailey’s Functioning Label, one of my responsibilities is to ensure that Bailey not use this skill to speak about Autism. I sometimes fail at this, and in these cases Bailey may be subjected to harsh criticism, ridicule or even threats for having forgotten that she is NLMC.
Sometimes, I prevent Bailey from needing accommodations in school, and later in the workplace. Often, Bailey will be unemployed as an adult. Sometimes she is underemployed, working at low paying jobs which do not engage her interests or make use of her skills.Bailey may misunderstand directions or find herself unable to break inefficient patterns, even when warned by her employer. Bailey may have difficulty relating to co-workers, quickly finding herself without allies. She may misinterpret the culture of the business she works for, making remarks which are “inappropriate” or failing to appear at the Optionally Required Social Event.
When Bailey abandons a task or leaves a job she no longer feels the confidence to continue dragging through while others seem to glide on by, I am there to remind her (and everyone else) that this is her own fault. When Bailey protests that the employer(or teacher, or friend, or family member)'s failure to accommodate her Autism may be at least a part of the problem, everyone looks at me in disbelief. I am the evidence Bailey needed nothing. I am Bailey’s Functioning Label.
I also posted all of the above into my own livejournal and then added the following. I guess it could serve as an introduction here as well since I guess I have never really posted one:
This is still all very out-of-context to anyone who either doesn't know me very well (acquaintance), has never been around me outside of the environment they met me in (work, school, party), or didn't know me well before I began high school in 2000. Particularly the latter.
The person I am in most public settings (work, school, party) is as complete 180º opposite as possible from the "me" that I previously wasn't at all reserved about being 24 hours a day until the day I decided to start "trying".
I don't remember what set it off, if it was conscious or not. I just know I randomly experimented with "trying harder" to be "acceptable" when I started the first day of high school. I had a clean slate. There were still hundreds of people in the hallways who knew exactly who I was by how I had always behaved before that. HOWEVER, there were hundreds more who DIDN'T catch on. And miraculously, many of those new people actually LOVED me. Finally, I was "allowed" to be the girl you "wanted" to be around, not the girl you had to APOLOGIZE for BRINGING around.
I was only 10 when I moved to a place where I knew NO ONE for the first time ever. And it was on the first day of school THAT year --after I was again stared at, excluded, and bullied-- that I accepted what I thought would always be my fate. That I wasn't "allowed" to feel like everyone else. To be like everyone else. To experience what everyone else gets to. The PRIVILEGE of being "okay" was never going to be mine. So once I'd come to that conclusion, I was free. Free to be "me". Free to talk too much and walk funny and cover my body in colors and textures that felt good. God bless the precious few people who appreciated that about me. It takes a VERY mature person to APPRECIATE individuality as a child.
Anyway, when I discovered that I actually COULD have the same privilege that everyone else had, that I WASN'T chosen at birth to suffer throughout life like Jesus or something, I started doing everything in my power to retain that privilege.
Though I have since been blessed beyond words with the most deeply meaningful friendships and life experiences, the REAL pain started then.
Just as BEV expresses above, it is almost impossible to receive acknowledgement of very VERY real and widely encompassing handicaps if you excel at anything. In the matter of a year, I became the social equivalent of marathon winner with two prosthetic legs. If I could accomplish that, I SHOULD, then, logically, be able to accomplish ANYTHING, right? Unfortunately for everyone (friends, family, employers, coworkers), but especially me, it does NOT work that way.
While there are skills that I have picked up and even skills I began with that no one else even possessed at very early ages, there are some I have spent my life in great emotional/mental/psychological anguish lacking, that, at this point, though I have truly struggled, I fear I never will learn. And the reason I believe I will never learn them is that it has been my experience that those who DO have them will always write those of us who DONT have them off. And the people who DO have them HAPPEN to be the ones in charge. The rule writers. The managers. The grade givers. They will always diagnose my legitimate disabilities as willfully-overcomable traits such as laziness or disinterest, unacceptable & odd.
There are things that I am good at and I am excellent at them. I can do them flawlessly, with accuracy and precision, everytime, ALL the time, for hours and hours and hours and hours at a time. Then there are things that I am bad at. I have always been bad at them. Not only bad, but hopeless, not only hopeless, but helpless, not only helpless, but downright incapable. It's not an excuse; it's an inherent inability. If you would not insult a tetraplegic by suggesting that if he can think and see and speak he should be responsible for walking, if he is officially handicapped, why is it okay to insult me in the same way?
I simply do not understand how I will ever get to do what I am good at if it is required for me to FIRST do what I am bad at. Will ANYONE ever give me the opportunity? How do I defeat all of the Catch 22s that stand between me and what I could be? When will it stop being about what I SHOULD be and start being about just HOW much I really truly COULD be?
.