Monday, January 27, 2014

Autistic Traits Vs. Autism

Ever hear the phrase, "Oh, I have autistic traits, too!" when telling someone you or your child has autism? Or have you ever been insulted, as I recently have, that you might only have autistic traits and not really autism?

Folks, there are big differences between those two. Big. Huge, even.


It's like that. 

Perservation:

An autistic trait might be having an idea stuck in your head for a couple of days.

Being autistic means you perservate upon this idea for days, weeks, months, years even. I replay conversations I've had with people up to ten or even twenty years ago and think about how I could have responded differently.

Part of my autism and then PTSD from being repeatedly sexually abused means that my mind was stuck, for years, on how I could have prevented any harm being done to me. It still is, at times, though therapy has helped.

Perservation also means obsessions, or concentrated interests. Those come and go. I collect things- hobbies, objects, and intangible interests with zeal. When I was a kid, those things were rocks. Big, small, minuscule. I used to dig rocks out of my brother's bike tires, my parents car tires, the ground, our aggregate driveway, the creek beds... you get the idea. I also collected shells and would memorize what kind they were. I was into history and would gobble up any kind of texts that I could on eras I was interested in at that time. It was hard for me to snap out of my reverie for Laura Ingalls Wilder. I was convinced I needed a corset and hoop skirt. I also collect(ed) masks, and for a brief period, I collected dolls until they creeped me out.

As an adult, I've perservated on cleaning supplies (that's driven a lot of people crazy, since I don't actually use them, I just want to try them out), making hair bows, sea glass, carving pumpkins for 24 hours straight, my kids' birthday cakes, topics of conversation (which is why I have this blog about autism), etc.

Routine:

Someone with autistic traits might like things scheduled just so, but do they have meltdowns if the routine is disrupted? Or if they're late? Do they panic if they're late? I cannot answer those questions.

I like my routines, and am flexible due to the kids, but when Morgan was a baby, I had such a set routine I would flip out if anyone (including me) disrupted it. I was convinced if the routine wasn't followed, then the Earth would stop, or something like that. I would cry, convinced that I'd just sentenced myself to be a horrible mom. I was phobic about this being derailed. It turns out I was partially correct about his routine being disturbed because he really thrives on a schedule, but I can't figure out if that's nature or nurture. In this case, maybe both?

If my mom was more than five minutes late picking me up from school, I was a hot mess. I would panic, thinking she'd been in an accident, forgotten me, or something just as bad.

As for being late, I panic. I panic if I'm early. I need to be prompt. I hate it. But there is a niggling feeling in the back of my brain that all hell will break loose if I'm not exactly on time. 

Stimming:

Everyone stims. If one smokes, twirls one's hair, bounces one's leg while the legs are crossed, chews on fingernails, etc., that's stimming. Those could be deemed autistic traits that neurotypicals express.  Likely as not, you're doing this unconsciously.

Just as I'm unconsciously viciously tossing my hands (flapping, but it isn't happy), pacing, do this jaw popping thing which make me look as if I'm trying to dislocate my jaw repeatedly, and rub my hands down the tops of my thighs (think: I look as if I'm trying to get warm) when I'm nervous. I probably do more, but it's not been pointed out to me.

I stim to release stress, usually. If I'm aware of it, I sit on my hands. My earliest memory of doing this is in third grade when someone pointed out the rubbing thing to me and said it looked weird.

Social situations/ away from my comfort zone:

I know that some neurotypicals could say that they have autistic traits here, which manifest as social anxiety, agoraphobia, etc. Social anxiety is a horrible thing to suffer from. I use the term "suffer" because that's what it is- suffering.

I hate a lot of social situations and can only do them effectively, that is, without embarrassing myself too badly, in small doses. They drain the hell out of me.

If it's something at the kids' school, I play the role of the take charge mom who gets things done and push through. I imagine myself as a "normal" mom who has no problem with things like this, and concentrate on the kids. I also try to focus on the one parent I'm comfortable with and talk to them. I'm polite. I tend to try to look visibly relaxed, even though I feel myself being drained. I thank God that there is a limited time period for everything and I know exactly when I can go home and collapse.

At parties, though... ugh. It was easier, to a degree, when I was younger and had no children because I could just get bombed out of my gourd and just be the girl who acted a little crazy and said what she felt with little to no repercussions. Now, when I go to company events with my husband, I feel really awkward. I never know what to talk about or say. Invariably, whatever comes out of my mouth is the wrong thing, or I think it is. I don't know how to read people's facial expressions. I inwardly panic the entire time. I will replay conversations in their entirety for the next week or two, trying to figure out if I embarrassed my husband or myself. I'm always afraid that I have.

Then, there's the bane of my existence: shopping for anything. I get itchy, panicky, and need a sedative half the time. It doesn't matter if I am shopping for groceries, clothing, or shoes. If I'm grocery shopping, there are too many smells, bright lights, beeping sounds, visual clutter, and people. Always people. Clothing shopping is the final circle of Dante's hell- thank God for ordering online. I love shoes, but I wish I could be in and out, and never have to try on anything.

Self care:

This is a biggie, I've found.

I don't know if it's an autistic trait to be lax or over zealous with hygiene. I just don't know.

I know that I'm able to care for myself, but sometimes when I think of every single step necessary to complete a shower routine- from the running of the water, to the washing, shaving, washing of the hair, to the rinsing, then drying, then moisturizing, then clothing, to the blow drying, then more moisturizing... I'm exhausted and it's hard to want to do. It's easier to not do it. I do it, but running that mental list through my head and then mentally prepping myself to do it, then doing it, I'm tired after.

I've heard it said about autistic women that we're plain or we don't wear makeup. Well, count yourself lucky in my case that I've gone that far and even put on make up.

Meltdowns:

These aren't your average hissy fits or rages.

When I feel a meltdown coming... it's like a tsunami of emotions is starting at my toes and rising. It could be days before I explode in some way. Everything feels electrically charged. I must, must, must find an outlet. I'm scared of the meltdowns. I'm panicky and need some place safe to escape. I used to feel them coming and be convinced that something bad was going to happen. I didn't realize that this was anxiety manifesting and that the "bad" was me, getting ready to blow. When I feel like this, the smallest thing can trigger me.

I hate meltdowns. I hate the things that come out of my mouth. I hate feeling nearly primal. It's like everything bad that I've ever bottled up comes spewing out. As if I'm a capped off carbonated beverage that's been shaken too much and someone has finally released the pressure.

After, I'm shaky for hours or days. I'm not always sure what I've said. And I feel discombobulated.

Filtering:

Plenty of people claim to have zero filters, so I'm not sure if this is an autistic trait or not.

In my case, if you ask me a question, I'm going to give you a dead on honest answer, whether you like it or not. I don't tend to sugar coat a lot of things, unless I really care about someone. And even then, my version of sugarcoating really isn't sugary. It's more along the lines of, "Well, I think your boyfriend is a flaming jackass, but hey! If you're happy, then I'm super happy for you!" I literally have bit my tongue to keep from blurting things out and I find when interacting with people online that the backspace or delete buttons to be my best friends.

Facial recognition/names to faces:

"I'm bad with names, but I always remember a face." Ever hear that? Can you relate to that? I can't. 

One thing my son and I have in common is this thing called prosopagnosia, or face blindness.  I never had a name for it until Morgan. It's where you can see someone day after day and you might not ever remember their name. I think his is more severe than mine, but we've never really compared notes. Mine has been much worse since my first seizure two years ago. I use tricks to remember people's names, like "Kim" is the one with red hair, has a child in Morgan's classroom, loves boots, and has a slight lisp. I know the names of the ladies who work in the front office of the school, but unless they're wearing their name badges, I can't tell who is who- and they look nothing alike.

This is an embarrassing thing to have as an adult. I'm always waiting for someone to reintroduce themselves, especially if I've met them several times and still can't remember their name. I have a habit of calling people by the wrong name, so does Morgan. Odd how grown ups don't get mad at a child but will at an adult.

Sensory issues:

I don't view sensory issues as an autistic trait at all, anyone can have them, hence the term Sensory Processing Disorder. The way one deals with it, though, I do believe is affected by one's neurology.

I have to have fabrics of a certain feel and weight, otherwise I go into a meltdown fast. Last year, I was trying on dresses (already a stressful situation) for a dinner and put on this pretty dress. I loved it. However, the fabric was "wrong." I began to feel itchy, though the fabric wasn't itchy. I began to panic. I couldn't reach the zipper in the back. I needed to get out of that dress. It was suffocating me. I was a hot, crying, blubbering, mess by the time my husband brought me back another dress to try on. The next one was even worse. It clung wrong and the seams rubbed to the point I swore it felt like I was being burned. Cue panic. He didn't get it... and neither did I, except that I knew I couldn't wear either. I wound up not going to the dinner because all of the dresses were "wrong."

My clothes have to be soft, of a correct weight depending on the season, have a lack of zippers on the shirts, no tags (or I'll cut them out), certain necklines, certain cuffs, etc. Basically, I make shopping for me a pain in the ass.




I'm not saying that people cannot have autistic traits. I hope that nothing I've said has negated that. But when someone tells me or another autistic adult or even a child that perhaps we only have autistic traits and are not autistic, it's insulting.

Basically, it comes down to this: medication can help someone get control of or even temporarily rid them of their autistic traits; medication can help an autistic like me only control my autistic traits, should I choose that route. But a pill can't fix everything and a pill certainly won't make me less autistic. Ever.

Don't ever tell someone who is "openly" autistic that they aren't autistic, that they only have autistic traits. It's the equivalent to telling someone who's gay that they aren't really gay that they only have gay traits. See the similarity and where the insult might fall?








6 comments :

  1. I have to say until I found the phrase 'self identified' I may have said 'traits' about myself (but not another person). I worry a lot that I am misappropriating something. Except on the many many days when all of the above apply :)

    BTW I think the hygiene thing is very all or nothing. I shower EVERY day. But, for some reason I have to miss a morning shower, I find it impossible to shower later and yes, there are days when doing the steps necessary to shower feel impossible. I think that's why I've made it a rule to do that everyday.

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    1. So, you're saying it's all about routine, yes? lol

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  2. I am glad you wrote this and that I read this. Our son has SPD and while he has autistic tendencies in several areas (notably social and verbal), he is not autistic. I never say he is. I started to write out a long response to your post, noting our son's reactions to your list, but realized that it would be a very long reply so I blogged about it instead. If you have the time, if you would like, you can read my response. It isn't a negative reply towards your post at all, in case you wonder about that. :)

    http://wearethebrothersb.blogspot.com/2014/01/autistic-traits-versus-autism-response.html

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  3. Thanks fo rposting this. I found you via Stacey's blog and have written about this topic on mine. I have an autism diagnosis, but I am pretty socialbe (it's learned, but still). I want to say that, while autistic traits are definitely not autism, like Stacey's son, some children and adults with "just" autistic traits have seere sensory and executive functioning impairments and are much ore severely disabled than thier social skills and ability to function without rigid routines would suggest. I have an Asperger's diagnosis because I do not have a language delay, but I m definitely not midly affected.

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  4. Hey, my brother, father and various other members of my family are AUTISTIC but I have AUTISTIC TRAITS (I know this because me and brother were both assessed by professionals as youngsters). The main reason I'm not considered autistic is I was an early talker and I have always been deeply emotional, dramatic and outgoing. The traits enable me to relate to my brother. The question that always springs to mind is, did I learn these traits from the close relationship I have had with my brother? Or would I have them anyway? It's an interesting conundrum.

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  5. Thankyou thankyou thankyou.
    You made me cry.
    I do pretty much all of the things you have said plus others.
    I am also going through the process with my son and having people not believe me is the hardest reaction to cope with.
    So thankyou for writing this so I could read it in this morning

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