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.