Normal Is Overrated

Musings and meanderings on the autistic spectrum

February 20, 2010

Guest Post: Misinformed Autism Awareness Doesn’t Just Hurt Autistics

(This is my post for Disability Blog Carnival #63: Relationships. See also the companion post from codeman38.)

April is coming.

It’s only just nearing the end of February. I know that. I also know that there are many things I need to get done in my life before April Fools Day comes around again.

But still, April is looming. I can almost feel myself bracing for it.

April Fools Day. The day it always starts.

Justifying The Existence Of My Boyfriend Month.

Justifying The Existence Of Our Relationship Month.

Justifying The Fact That No, I Am NOT Going To Try To Change Him Month.

Hi, I’m codeman38’s girlfriend.

The one the “My autistic child is never going to have a girlfriend!” moans during Autism Awareness Month claim doesn’t exist.

(Then again, every year a number of people usually manage to claim adult autistics don’t exist, so codeman38 and I are likely somewhat even on that. Not that either of us is keeping score.)

Thanks to the growing side awareness about something people are calling ‘Cassandra Affective Disorder’, sooner or later I’m going to get labeled as something I’m not.

So let me put this plainly:

I’m sick and tired of being told I’m broken in some way for loving him, and sick and tired of having to explain that most of what gets said during Autism Awareness Month doesn’t apply to him or most other autistics.

And I’m especially sick and tired of the way all people in relationships with autistic people, whatever their point on the diagnostic spectrum, are being tarred with this Cassandra Affective Disorder thing.

1) He did not deceive me into thinking he was ‘normal’.

One of the first bits of personal information we exchanged the day we met was that I have Attention Deficit Disorder and he has that plus an Asperger’s Syndrome diagnosis. I didn’t know what that meant right then, nor for the several years we were friends before dating, but at any time – even that night – I could have gone to my dorm room, searched on Google, and found every bit of misinformation and information about that diagnostic label that the Internet had to offer.

And yes, we were friends for years before we became a couple. I got to know him. Sure there were some details, like perceptual quirks, that he had to eventually tell me about because an observer couldn’t know, but at no point was he trying to mask anything past what he normally had to do to get through a day in college.

Every time I read one of the ‘but I didn’t know what he was!’ descriptions of ‘My Hell Relationship With An Autistic Person’, I can’t help but think that what I’m reading sounds a lot like a typical case of a couple who didn’t know each other, really know each other, before they got together. Barriers never got dropped. Suddenly, being together is a safe place instead of a social situation. Coping mechanisms get dropped, and behaviors the non-autistic didn’t know about show up.

And there’s probably a fair dose of the usual ‘but he wants the toilet paper roll turned the WRONG way!’ disputes mixed into it — except that society right now does default into ‘the autistic is always wrong’.

2) Using a relationship to force someone to change? Is wrong.

And that is pretty much what a lot of the symptoms of CAD seem to be to me: one partner trying to change the other. It’s just that since those things happen to be innate traits, present from the time of earliest memories if not present from birth, that pushing doesn’t actually do much of anything except cause a lot of negative emotional fallout on both sides.

When I was in high school and college, the Warnings You Are In A Bad Relationship brochures and talks usually included the idea that someone who tries to change you from who you are is not someone you need to be around, much less date.

I was being warned to avoid people with the same sorts of relationship behaviors that supposedly go with dating an autistic according to the CAD people.

Forcing change of innate characteristics based on the desire of another party is considered at best mild relationship abuse unless, and so far as I can tell solely unless, the victim has an autistic spectrum diagnosis.

And at least some claiming CAD exists claim pretty much everyone dating or married to an autistic person — any autistic person, no matter what diagnosis, no matter how ‘high-functioning’ — has this supposed disorder.

I’m, however unintentionally, being labeled an emotional abuser of my boyfriend because and only because he was given an Asperger’s Disorder diagnosis late in high school.

3) Stop with the two uses of the word ‘encouraging’.

This is an old old rant codeman38 has heard from me before. We’re both word geeks. Hopefully he won’t mind my finally repeating it in public here.

There are two main forms of the word ‘encouraging’ in use today in America.

One is the everyday positive ‘he was an encouragement to me’ usage. People may question the motives involved, but the general outcome for the target of the encouragement is held to be better than if it hadn’t happened.

Those bells everyone keeps ringing during Olympic skiing events? Those are supposed to be this kind of encouraging.

And then, there’s the other meaning of the word, usually heard in the sentence “Don’t encourage him.”

It’s never been said to me, but I can feel it sometimes. When he stims and I don’t do a ‘dude, stop that’ maneuver. When he’s focusing so hard on something that he can’t actually focus usefully and it’s time for the funny youtube clip that is somehow not socially right because it’s distracting him from focusing on how much he can’t focus (I’m still trying to understand that logical loop).

And, most especially, the one or two times he’s rocked and I’ve joined in.

There, I finally admitted it. And it’s surprising how socially wrong even admitting that actually is, given that just a quick trip to someplace with a porch swing would make it suddenly traditional ‘oh that’s so sweet’ dating behavior.

And that brings me to

4) There are many ways to say I Love You.

I shouldn’t have to say this. That book a while back about people having different Love Languages should have said it all for me, but the ‘I’ll never hear my child say ‘I Love You” claims during April every year mean I apparently have to.

Codeman38 has an auditory processing disorder as part of what gave him the Asperger’s Diagnosis. He’s got other perceptual quirks, to be sure, but that’s the big one.

That means that, regardless of whatever effects autism may have on his own emotional displays, sometimes words can’t work as a sign of affection with him. If I tell him “I love you” over a cell phone connection, even a good one, there are many many days I might as well be saying “My hovercraft is full of eels” because he’s not going to understand me.

This means that apart from Skype and the times we do manage to be in the same room at the same time, we’ve got text messages, e-mail, and instant messenger as communication tools.

So, even without emotional display preferences coming into it, neither of us hears ‘I love you’ all that much.

But here’s the thing: love doesn’t take saying the words often. They are not some magic incantation that makes an emotion really exist. Getting someone to say “I love you” does not make them love you. Never hearing someone say “I love you” isn’t absolute proof that they don’t.

We pass each other web links all the time, things we know the other would be incredibly interested in even if they aren’t our personal cup of tea.

We keep an eye out while shopping, and if there’s something like a $3 DVD at BigLots we know the other has been searching ages for, we make sure it hasn’t already been found, get it, and add it to the pile of things we’ll exchange the next time we do manage to be in the same place.

We offer humor when needed, and sympathy when needed.

And I’m tired of it being like all that doesn’t matter just because it can be a week between times we each type three words, and has been known to be months between times we hear them.

——

And if you think all this affects me, just remember: all it takes is ending one human relationship, just one, for me not to have to deal with these assumptions and judgments of society ever again.

Codeman38 doesn’t have that option. Other autistics don’t have that option.

Anyone they ever date or marry will have to deal with this pile of problems and issues unless things change, and the very people who lament autistics not being able to date successfully are often the very people driving these stresses every single April.

Filed under: Blog Carnival,General,Guest Posts — sarahgirl @ 12:39 pm

3 Comments »

  1. In my old age, I’ve come to the conclusion that love is a verb, not an emotion. It’s what you do everday, not what you say in a moment of lust or what you “feel” when things are going just right. Maybe being married to the same man for 30 years has something to do with that, I don’t know.

    Comment by Rose — February 20, 2010 @ 5:05 pm

  2. You’ve figured out already what millions of adults will probably never learn, how to accept and love someone for who they are, not for who you can “mold” them into. Kudos to you for expressing it so well!

    As for the CAD, when I looked into that a few years ago after stumbling upon it, i figured out it was a made up diagnosis to make some women feel better about how they felt when the man of their dreams didn’t change after many years of trying. I would have hated being married to some nagging complainer, constanty wanting me to say “I love you” all the time. My dh doesn’t need constant assurance of my love all the time, we show it in the little things every day. I am not expressive, and I do not like being touched a lot (since I started refusing hugs and kisses at 1 yr old) except by family. I kind of like that story when the man is asked why he doesn’t say ILU to his wife of 30 yrs, and replies “I told her when we married ILU. If I change my mind, I’ll tell her.”. I also am very bad about birthdays and presents, but I think it’s more how you treat someone daily that let’s them know how you feel, rather than once or twice a year on a proclaimed holiday/birthday present defining love.

    One of my favorite songs is “Hold on Loosely”. Until I met my dh, every guy I dated would suffocate me. They seemed to think we should be joined at the hip as a couple. My dh doesn’t need me to to massage his ego all the time. I do not understand why I should have to be responsible for someone elses happiness. We have different likes and interests. Just because my ILs have never spent a night apart in over 50 yrs and do everything together doesn’t mean that we have to. Yet they look at me like I’ve got 3 heads when I tell them I told dh to take a vacation without me, no strings attached. They think we have marital problems. We are individuals who love each other and don’t restrict each other if there is something the other wants to do.

    Well, I’ve blathered on for too long. We are driving home from vacation in DC and your blog was a treat to read!

    BTW, I figured out very quickly that my son, even though he couldn’t speak early on, loved me. He tells me now in words out of the blue. He shows me by doing special things for me. He is a wicked cuddler. All around great kid! I look forward to April as Autism Mythbusting Month!

    Comment by Storkdok — February 21, 2010 @ 4:25 pm

  3. I’d never heard of CAD before. (I’m rather wishing I hadn’t now, although I don’t blame you for that.)

    But this post caught my eye because in some ways our situations are reversed, and in some ways they are not. My husband has inattentive-type ADHD (and has known about it since grade school) while I only recently found out about my autism (although obviously I have always been this way).

    Our early relationship was rough. I knew we weren’t communicating — hell, I’ve never been able to communicate with anyone — but I really liked him. I figured that since he seemed pretty normal, the best I could do to communicate my feelings for him was to demand ‘normal’ expressions of love from him (like excessive expenditures of money and time and attention) … but he wasn’t capable or interested in giving me those things, and I didn’t really want them anyway. It was just the only way I knew to measure the depth of his feelings or to show mine — the only script I had.

    Eventually things came to a head. As a last ditch effort to get through to me, he gave me a book on ADHD. I read it in a few hours and then hit the bookstore to read everything else I could find. It hit me like a lightning strike: he wasn’t any more normal than I was, and he had no idea how to communicate either. So we had a wonderful IM conversation (which is about the only way I can talk when I’m emotional) and decided that we really did want to stick together, even if it meant learning new ways to communicate with each other.

    (Aside: And finding ways to communicate mostly means being very straightforward … which leads to some wonderful conversations. “I got you this chocolate to show you that I was thinking about you.” – “Thanks! I don’t like that chocolate, though. It’s bitter.” – “Well, I was thinking about you anyway.” – “That’s cool.” – “Can *I* eat it then?” – “Sure!”)

    That was twelve years ago. We’ve had a couple of weird power struggles when his ADHD and my autism collide. (For instance: that toilet paper thing? I can’t let that go. It’s just not logical to put it the wrong way round.) But there is plenty of slack in our relationship to accommodate that. (Now we keep separate bathrooms.) And I am very thankful to have found him, because I think my chances of finding another person to accept me how I am are pretty low. Of course, he says the same about me. :>

    Comment by wtfmi — February 25, 2010 @ 2:28 am

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