I am a person, not a function

There are already so many excellent blogs about this topic, but it seems like it comes up again and again, and I felt I needed to address it, as it’s come up in the comments of my last post.

It is neurotypical and allistic (non-autistic) people who are the ones who are determining that a person is a “high functioning” autistic or a “low functioning” autistic.  To my knowledge, this hasn’t been accepted by the autism community as an appropriate way to speak about people’s needs (though feel free to correct me if I’m wrong).  Some people argue that you can’t talk about where a person falls on the autism spectrum without these labels, but I disagree.  I think that you can be fully clear about a person’s abilities while avoiding the functioning labels BS.

For example:

Jane is a nonspeaking autistic who needs an aide to assist with feeding and dressing, because she has difficulty with her motor skills.

See? I was able to speak about Jane’s actual needs rather than whether she “functions” on the low or high end of the spectrum.

There is no way to be the perfect autistic person.  The problem is that allistic/NT folks want to erase you on both sides! If you’re nonspeaking or need assistance/aides/can’t live on your own, etc., then you clearly don’t have the mental capacity to make decisions for yourself.  If you’re articulate, verbal, can compose fine pieces of writing, have a job where you are successful, have friends, etc., well, then you’re too high functioning to be a part of the conversation, because you really don’t understand what it’s like for those “low functioning autistics”.  Either way, someone is going to speak over you, and that isn’t okay.

I’ve touched on my own personal history before, and I don’t really fall neatly into allistics’ ideas of what a high or a low functioning autistic person is.  I can speak (though it’s difficult for me to get the words out in the right order, unless I have a script), I can write, I have a job, I have a romantic relationship, I have two children, etc.  That doesn’t mean I don’t struggle with a good number of things related to being autistic.  I had to write a note in my son’s notebook (that comes back and forth to school) that the teacher needed to check her email, because I cannot really do phone calls, and find it much easier to communicate my needs via email.  When I worked in childcare this past fall and winter, I wore earplugs so that I could mitigate the noise of crying, and I volunteered to be the one to rock the crying children, because hey, it was stimming that wasn’t looked down upon.  I have lists around my house so that I can complete basic tasks (like laundry, hygiene tasks, cooking, etc.).  I set reminders for myself about 30 minutes before I need to be getting ready/on the road, etc., because my executive functioning levels when it comes to planning is really crap.

I say all of this to say that yes, my diagnosis is Asperger’s.  I did spend much of my life (until age 8) unable to speak to anyone outside of my immediate family, and I was identified as learning disabled very early in my elementary school years.  Had I been evaluated as a toddler, preschooler, or even school aged child with the knowledge that is around today, I feel quite confident that I would emerge with a diagnosis of PDD-NOS or autism because my symptoms, while somewhat atypical (because I could speak; I simply had difficulty forming words around people who weren’t my parents, siblings, or grandparents), were quite pervasive, and they continue to be so, though I’ve found ways of coping now that I am an adult.  Again, you cannot look at an autistic adult and say “you’re not like my child” and have that statement be fully accurate, because your three year old hasn’t had 30 years of learning to cope.  Your three year old has had THREE years to cope, and that’s it.

I am more than what I can do or not do.  I am dependent on others, but so is everyone else in the world.  No one is fully independent (you don’t produce all your own food, do you?).  Stop medicalizing a person’s executive function levels and other means of deciding what is “low functioning” and “high functioning” and just speak about a person’s abilities and their needs.  It’s far more accurate in the long run.

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8 thoughts on “I am a person, not a function

  1. There are so many people that need to read this post. The labels “high functioning” or “low functioning” have been accepted in the autisms community. It is unfortunate, but true. There is argument within the community weather someone prefers the label Asperger’s or High Functioning Autistic. I’m acutally surprised you have not heard of this yourself.

    I have been diagnosed for about a year. New to the label to not new to the challenges of living on the spectrum. I am over 40 and was blissfully unaware of what Autism was until having my son at age 34.

    What I find most challenging are the similarities between the Autisms community and non-autistics when it comes to such things as lables. Its like the non-autistics need lables to quanitfy cause and effect of being on the spectrum. This is only so they can comprehend it the small fraction of information research has produced. In the Autisms community I find the need for lables is very prevelent as well, not just for understanding, but for grouping. Much like you discribe. Assumptions of ones intelligence are based on the label “high” or “low” functioning. So there are ASD/Aspies out there that boast having higher intelligence thus earning the label “high” functioning. There is somewhat of an elitest attitude about this.

    I am very glad that you are bringing this subject to the surface. I don’t really care what non-autistics think about us, but I do care a lot about how we think of ourselves and our fellow spectrumites.

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    1. Yes! You touched on a couple of important points that I didn’t make here but are oh so very relevant! The first is Aspie elitism, which has to do with being labeled as highly intelligent. But it is more than that; there’s a group of autistics, diagnosed with Aspergers (or alternately, diagnosed with autism but told they are “VERY high functioning”) who believe that Aspergers is the next step in human evolution. And while I get the desire to be respected, that’s really polarizing. I may write a followup post just on that because I do have a lot to say about that. The second point is that nonautistics like to label us and try and fit us into neat categories, and the thing is that we’re kind of like square pegs trying to fit into a round hole. It just doesn’t work. And we are human beings and we don’t fit neatly into these categories. Even if I used speech as an example, it’s difficult to classify people like me. I’m not entirely nonverbal. I can speak. I have a job that requires me to speak, according to a script. But I find it difficult to speak spontaneously and while I’m fairly able to articulate concepts on paper, I cannot do so in person, verbally.

      And of course, there’s always the fact that people overall vary in their abilities and energy level. Sometimes I’m so overwhelmed that it’s difficult to perform basic functions. Other times, it’s a breeze. NT folks tend to get a pass – they’re stressed, they’re tired, just don’t feel up to par, etc. And while that may not work as an excuse with regards to obligations, it’s far less of a “failing” for them than it is for us.

      And *wave* I was just officially dx last year and I too didn’t suspect I would ever have a label beyond “learning disabled/sensitive/with ADHD”. My daughter was dx almost 4 years ago and I thought that autism was this scary unknown, until I figured out she was just like me! That was a huge relief. So I’ve known I was autistic for about 3 1/2 years but have had my diagnosis for a year. Too bad the DSM IV was published in 1994. I might have had a chance at a diagnosis far earlier had it been around for my eval @ age 12 in 1993. But then again, society was even more ableist back then, so perhaps it was a good thing that I made it through childhood with just a vague label.

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      1. Another wonderful post, as usual. First time I ever heard the questioning of the functioning label was in ‘loving lampposts’. This is before I had read any blogs really. but it also got me thinking about the topic too. like, both you and Jackie (so many others too). I’m older and was misdiagnosed or ‘labeled’ with other things. After my son’s diagnosis, I started seeing similarities too. And actually I just asked his therapist (not ABA, a psychologist for other issues I don’t want to bring up) about how I think (actually the more information I get and the more I see myself in so many other, I am pretty sure) i am on the spectrum. She is going to ask her supervisor if she can get information on adult evaluations and where I could go. I do have a hard time with the ‘high/low functioning’ labels too. It’s late and I forgot my train of thought here. But I just wanna say, again, love all your posts. I learn so much from them and it also makes me feel not so alone if that makes sense.

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  2. Interesting, and very relevant.

    I was officially diagnosed just this past March – so a year ago – but had known I was an Aspie for several years before that (just hadn’t really looked into it a lot, aside from what my SLP-in-training [at the time] sister was able to tell me). As far as I’m concerned, I’m “an Aspie” because I had no significant speech delays, and my mother remembers me as going from a few words to almost fully formed sentences very rapidly (though that might be just an artifact of it being over 30 years ago). I’m “Autistic” or “ASD” because I’m on the autism spectrum.

    I’m intelligent because my parents and grandparents were intelligent, and I was lucky enough to inherit those genes from them. All my siblings are intelligent as well, and I’m the only one on the autism spectrum. My intelligence doesn’t entirely help me cope with some of the aspects of day-to-day living, or the sensory overloads, or having to deal with people, or the understanding of my own emotions.

    I’m creative because… well, I am. It’s quite possible some of that is because I’m on the spectrum (I *love* what I’ve read so far of Amy Sequenzia’s poetry, and what I’ve seen of Ari Blue’s pictures – http://ari-blue.blogspot.ca/ ), and quite possible not. *shrugs*

    My main interest in being labelled was in order to: have some idea of what was going on, and being able to access a community that could help me deal with things; and to get access to support services. I’ve since learned that the autistic community doesn’t in general care for the HFA / MFA / LFA labels, and as such, have done my best to remove them from my language (both spoken and written).

    And I’ve learned a lot about the assumptions made by the allistic community and how wrong they can be (i.e. Amy Sequenzia’s poetry and way with words, when she’s non-verbal and needs FC to communicate properly), and I’ve found that yes, there’s plenty to be proud of in the autistic community.

    Elitism is not something to be proud of.

    So, you go! All the more power to you and everyone who is working to point out the problems with the labels that currently exist.

    🙂 tagAught

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    1. TagAught, you pretty much wrote what was on my mind. My thoughts are all jumbled right now because i’m tired. But yes that is exactly how I feel too. I think Elitism anywhere is just bad all around.

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