Functioning Label Rant

Posted by on Nov 7, 2016 in Autism | 1 comment

Illustration of two people: one standing on a low platform, the other standing on a high platform.A few months ago,on another blog, I was talking with other autistic women about functioning labels: high-functioning and low-functioning. Mostly about how much we hate them and why.

Today, a neurotypical woman commented on why we were all wrong about functioning labels. She understands the autistic experience because her fiancee is a high-functioning autistic man whose mother heads an autism charity. Though she really hopes she doesn’t offend anyone, she thinks the labels are good; finds them very helpful in dealing with the autistic kids she encounters when helping out at her future MIL’s charity.

As you might imagine, this was not well-received. A few others replied to her with obvious anger, so I thought I would try to calmly explain to her why her comment was offensive. I tried really super extra hard to keep the anger out of my tone. I’ll let you be the judge of how I did on that front (Hint: I don’t think I did very well at all):

I think I understand what you’re trying to say. Part of the problem is that “low-functioning” is a meaningless and derogatory term. It didn’t actually help you in either of the situations you describe because it didn’t tell you that the first kid didn’t react well to being approached or that the second set of kids would miss the nuances of your political discussion. Therein lies the issue with those two labels. They basically say, “over here are the low-functioning autistics, the ones you need to avoid talking to or aggravating or maybe just avoid period, while, over here, you have the high-functioning group of autistics, aka the good autistics, who are really normal but have some quirks. Don’t we all have quirks?”

Think about your fiancee for a minute. You say you didn’t know he was autistic for several years because he’s high-functioning and you, as a normal person, didn’t notice his issues. Those issues are that he can’t talk to people in shops, can’t pay the bill, has secret panic attacks, and needs time to process information before he replies. Do you think that his panic attacks affect him less than literal thinking affects the kids who can’t pick up nuance in a conversation? How would you label an articulate, brilliant autistic writer who is non-verbal? Or someone who can talk to people and pay restaurant bills, but can’t live alone without support?

High-functioning/low-functioning are labels neurotypical people put on autistic people for their own benefit, not for the benefit of the autistic person they’re discussing without even consulting him/her. I’ve been guilty of it. When my oldest son started school and I told the teacher he was autistic, she frowned and I was quick to add that he’s high-functioning. Meaning that he wouldn’t be any trouble in her class, because that’s what it’s code for. I was afraid she would label him as low-functioning, not realizing I was doing him a disservice. In doing that, I was soothing the teacher instead of helping my child navigate school. Because even though he looks like he’s doing fine, he’s not. Yes, he’s articulate and crazy smart about dinosaurs and history in general, but he can’t make a diorama or write a book report.

Image or a woman's feet wearing one dress shoe and one tennis shoe.

We really all wear both.

We’re all capable in some areas and need varying degrees of support in others. And you can’t tell how much support or in what areas we need it by looking at us. I bet your fiancee doesn’t feel so high-functioning during a panic attack.

As women on the spectrum, most of us are told over and over that we’re not autistic. People who can’t possibly know what goes on inside our bodies and minds tell us that we’re not autistic when what they mean is that we don’t fit into their preconceived notion of what autism looks like, which is based on white, male children. So, your comment, no matter how well-intentioned, hurts us because you’re saying we’re wrong about our experiences as neuro-atypical people.

Basically, you are like a man claiming to know everything about menstrual cycles because you are engaged to a woman who has them. And that we should not take offense at your statements because you’re just trying to explain that it’s helpful for men to know when we’re on the rag so they can patronize us so as to not incur our wrath.

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Excuses

Posted by on Oct 31, 2016 in Anxiety, Autism, Musings | 1 comment

Illustration of a boy shrugging his shoulders.

Last week’s post about things I’d like to take a break from has me thinking about excuses. Excuse used to mean a reason. Like an excused absence in school meant that you had a verified reason for being gone, usually that you were sick. It seems to me that it’s become something else entirely in today’s vernacular. Now I feel like it means an illegitimate reason; a way to get out of something you should do, but you just don’t want to. A justification.

It’s really always been both. I know that. I guess I’m saying it feels like the latter has overtaken the former.

Last summer, I got a summons to serve on a jury at the end of August. I had served on two juries in the previous 18-months, the first county and the second federal, so I could legally be called for county jury duty again. I could have served, as I’d done before, by arranging after-school care for the boys and canceling their therapy appointments I wouldn’t be available to drive them to. But I knew that Zookeeper would need all the support we could muster to make this a good school year from the first moment and convince him things would be completely different from the horrors of last year.

So, there was a legitimate reason I couldn’t serve at the end of August. I could defer my service, as I’d done when I was called for service in December last year, starting on the first day of winter vacation, but I didn’t want to. I wanted to be excused. While it’s true that I didn’t know how the year would go or when I could expect things to settle down enough to leave Zookeeper in after-school care and skip therapy sessions, it didn’t feel like a legitimate excuse not to serve. It still doesn’t, though that may be due to the fact that this school year has gone so much better than anticipated.

Still, I went online and asked to be excused because my autistic son was recovering from a traumatic school year and I didn’t feel it would be healthy for him to miss a single session with his psychotherapist, the only person he’s completely comfortable being honest about his feelings with, because I couldn’t take him. I felt like they would tell me to get real; that everybody has problems and I would just have to figure it out.

But they didn’t. I was excused almost immediately, without any follow-up questions. And I feel as if I’ve gotten away with something.

On the other hand…

When I first started talking about my own autism diagnosis, a friend made a comment about probably also being on the spectrum, but refusing confirmation for fear of using it as an excuse not to go to the gym. Presumably due to sensory issues and coordination. That really got to me and I became adamant that autism is not an excuse. You may need accommodations to go to the gym, but that’s not an excuse. It’s a need. And it’s okay to have needs. It’s imperative to have needs and seek to have them met. Every living thing in the universe has needs. It’s the nature of life. But I find it embarrassing. I don’t want to have needs. I’m happy meeting the needs of others, I just don’t want to have any myself. And I think that’s somehow selfish.

That paragraph went somewhere I wasn’t expecting. My intent was to point out that autism is not an illegitimate reason; that it’s okay to accept that something is outside your capabilities or that you need help to achieve it. But I went inside my own psyche instead. I went to one of my deepest fears: to have a need I cannot fill on my own.

Maybe showing that fear is appropriate for Halloween.
Illustration of a boy dressed as a superhero posing with thumbs up behind a sign that says, "The Perfect Kid."

The final example I planned to share involves a conversation with my mother-in-law. She visited us the summer before she passed away. She and I were sitting at the kitchen table together one afternoon talking about the boys. She complimented them on something and I immediately began my “yes, but…” refrain. My intent, as I discussed in the Break post, was to be open about the struggles we’ve been through to achieve whatever it was she was praising the boys for and about how far we still have to go. Well, to be honest, my intent was probably more to make sure she understood than to be open about it. I have a need for people to know that. I also have a need for people to know how wonderful our boys are. Which version of things you get depends on where I think you’re coming from. Since she hadn’t born witness to the struggles, I assumed my mother-in-law was coming from the “look how easy it is” camp.

Her reaction surprised me. She said, “Well, I think my grandchildren are perfect,” and walked away from the conversation.

I think they’re perfect, too. I resented her rejection of my need to show the struggle for a long time. Until after her death, really.

But now I think that maybe she understood that there was struggle and that there was nothing she could do about it, so she wanted to focus on the good. Maybe she feared for them because I seemed not to see their beauty.  Maybe we were saying the same thing, but approaching it from opposite directions.

I like to think we understand each other now; that we both see their beauty and love them unconditionally, no excuses necessary.

 

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Break

Posted by on Oct 24, 2016 in Autism | 3 comments

Sparky and I generally have excellent communication skills. Not always with other people, I mean, between the two of us. When it breaks down, it breaks way the hell down. Like on Friday, when he was trying to do something nice for me, but our wires got crossed and we ended up fighting instead.

When I was alone and had time to think, I realized I was frustrated before we’d even started talking and I didn’t know it until after he had left for work. I texted him to tell him that and apologize. He texted back telling me  he’d sent me an email with his own apology about his pre-frustration.

Silhouette of a woman sitting under a tree reading a book with her lunch sitting next to her. So, we’re fine. When I looked at his email, I saw that he had been trying to figure out how to give me a small break from the kids – like a lunch on my own – because he’d read the article I posted that morning about the exhaustion that autism brings.

While I do often dream about the luxury of a lunch all alone when I’m supposed to be with the kids, I don’t think that’s the kind of break the author was talking about; at least that’s not how I read it. It’s not a break from the boys, but a break from autism.

Time when you’re not justifying good behavior. When you can just take a freakin’ compliment instead of feeling the need to mention all the ways he is not doing well. And feeling guilty about it. 

Time when you’re not mitigating poor behavior. When you can accept whatever the behavior is instead of feeling the need to mention all the ways he is doing great. And feeling guilty about it. 

Time when you’re not anticipating the next obstacle and how to avoid it. When you can be present in the moment instead of worrying what the next will bring. And feeling guilty about it. 

Time when you’re not worrying that you’re doing too much for him. When you can stand back and let him struggle with something, knowing he’ll ask for help if he needs it, not just give up. And feeling guilty about not trusting him to grow.

Time when you’re not worrying that you’re doing too little for him. When you can stand back and let him struggle with something, hoping he’s not traumatized by the struggle during the five minutes you took to finish the paragraph you were writing. And feeling guilty for taking a moment for yourself. 

Time when you’re not limited to three restaurants if you want to go out to eat. When you can try someplace new on a whim without triggering a meltdown. I don’t actually feel guilty about wanting that.

Time when I don’t have to cut off whatever I’m writing to go help BamBam process whatever it is he’s crying about outside. When he can lose a game without melting down in front of his friends. That day is not today. 

It’s not necessarily time away from the kids that I want, it’s time away from autism, but you can’t separate the two. I don’t really want to, as autism is part of who they are and I wouldn’t change them for anything in the world. I’d just like an autism pause button every once in awhile. 

Do they make a remote for that?

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Stormy

Posted by on Oct 17, 2016 in Musings | 0 comments

Natural disaster scene with hurricane illustrationThe good people on the interwebs who know about weather are telling us that the remnants of Typhoon Songda are headed our way. We may lose power if trees fall on power lines and, you know, Pacific Northwest is virtually synonymous with trees.

Plus, said trees still have many of their leaves, which means they catch more wind and are more likely to be felled.

So I’m scheduling this to post just in case our power goes out and I can’t get online.

Oh, and I want to apologize to Lora because she’s commented here the last two weeks and I didn’t get a notification, so I’m just now seeing them. Sorry!

See you next week! Or later today, depending on how things go…

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