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. 


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.


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. 


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.


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.


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?

Sunday, January 26, 2014

Autistic Enough? Thoughts on Functioning Labels

Ever since Morgan was diagnosed, I've come across this attitude from some parents, teachers, and other people of him not being "autistic enough" because he now speaks. Or, the fallback response of "but he seems so high functioning!" from pretty much everyone.

I feel, sometimes, as if it says, "Oh, he's autistic, but just a smidgen. You got lucky!"

I don't think that anyone means harm by this. But by saying my son is so high functioning, a term that really does nothing to describe him in any way, negates most of the struggles he has, I think.

It negates that he would rather spend time with his trains than people. And can recognize a train before a person. And hold a conversation about a train easier than he can hold a conversation with a person about his day.

It negates the hours of therapy, work, and the difficulties he still has with understanding the world outside his cocoon. Or even the cocoon itself.

It negates the several pages long IEP he has with accommodations that I've fought hard to get for him in the last few years.

It negates the fact that he still, at age nine, cannot tie his shoes, needs multiple prompts and help for hygienic issues, and dressing himself properly.

It negates that, even though he can Google "Bachmann Thomas," he's reading below grade level and needs quite a bit of help in most areas of academia.

It negates his bolting and eloping into traffic on occasion, which is scary as hell.

It negates him giving out his newly acquired personal information to perfect strangers and inviting them over. While we're in New Orleans. In bathrooms.

That's where my mind goes when I hear "high functioning" when addressed toward my son, whom I never let out of my sight.

The term "high functioning," as one of my autism mom friends put it to me, indicates that "they don't really know what your kid has been through, where they're coming from, and now they're slapping a random label on your kid because that kid can read a bit, write some- with help, and talk. Oh, and can convey thought? Yeah, makes perfect sense!" She and I agree that while it shouldn't feel like a slap in the face, it does. Like Morgan, her daughter speaks in scripts a lot of the time. Our two children are fairly different, but very much alike.

When I'm around some of my other autism moms with their children who have been labeled "low functioning or moderately functioning," I feel guilt. Those moms don't treat me any differently because of my child's label, and none of us really discuss those labels, but for me, those labels are hanging over our heads, like a thought bubble.

I want to burst that bubble with a pin. Our kids parallel play next to each other and are usually fine.

But still, I feel as though I must justify Morgan's autism in some way. My friends never ask me to or make me feel like I'm being put on trial like others do- they have great "A-dar." They see him bouncing, flapping, hear him scripting, note the lack of eye contact, etc. I just think that they're surprised when he hugs (which is nearly a stim for him) or wants to kiss them.

Then there's me. Am I autistic enough? The DSM-5 and my doctor think so. My husband and the majority of my friends who have spent significant amounts of time with me think so. Yet, if I say I'm autistic, people are quick to point out I function, which is laughable.

I function on my own level, which changes daily, as does Morgan's. Some days are better than others. There are days when I cannot take care of myself  well because it eats up whatever tokens I have. I save up my energy for the kids when they come home. I'm laconic, withdrawn, and anxiety ridden (let's face it, I'm always anxiety ridden).

Then there are days when I put on my best face, go out, do all the things I can do, and come home so drained I can't see straight. I'm tapped out. I've had to interact too much. I can pretend to enjoy it, and sometimes I even really do, but damn. It's hard.

So... how high functioning is that? What kind of functioning is that? Is it because I live in a home with my husband and two children that I'm HF? Would it matter that I'm not sure if I could do this without my husband's help and freely admit it?

When you ask about or address functioning levels, be it toward children or adults, be careful, please.

They're relative and change daily, weekly, or monthly. They really don't matter and don't convey the bigger story at all. They're not able to prove autism "credentials" or anything of that sort. For some, all they do is slap someone in the face.

Perhaps ask instead how the person is doing. Or how how far they have come. Don't assume to know the full story when you've been on board for barely a chapter.

Friday, January 17, 2014

Parenting is Hard

You know what's hard? Parenting. Parenting a child who's autistic, who has ADHD, who is bi-polar, who <insert diagnosis or lack thereof here>.... just parenting. This parenting gig is damned hard.

Life is hard. Being a parent is hard. It's okay to admit that, I promise.

You find joy where you can, happiness where it is, and you try not to lose your crap.

You march on.

And on.

And on.

 And on.

I hear from autism parents a lot. We discuss our lives in person, calls, texts, forums, groups, and private messages. Some of them ask me for answers to questions about their children and sometimes I can give them answers. But when they ask what they can do about themselves and the feeling of guilt like they aren't doing enough, I get stuck and feel fake. How can I answer something for someone when I don't have the answer myself?

I'm genuinely a happy person. However, life is hard. That's the thread that keeps coming up whenever I think about what's bothering us all. We do hard things. This parenting gig is rough and God help us if we say so openly, because if we do, we'll be crucified. We get compared to people we are not like. Or that our kids don't deserve us. We are told to suck it up, this is what we signed up for, to figuratively lace up our boots and get to it.

But God forbid we get it wrong.

I know that's what drives my anxiety, what makes my hands shake and even flap and keeps me up at night- getting it all wrong. My perception of "wrong" is probably not the same as some else's, but my idea of "right" or "good" is probably some non parent or sanctimonious parent's  idea of hideous.

So I, and others, keep marching along to my own tune with the help of some input from advice, hoping that I'm getting it right and not traumatizing my children too badly. I keep doing hard things. Because that's what parents do: hard things. 

Sometimes, the hardest thing to admit as a parent is that parenting is hard. You're not a failure if you admit it. I swear.

Wednesday, January 15, 2014

A Great Autistic Brother

Sometimes I think I forget to write about how great Morgan is to Bay.

Like last week...Morgan overheard me freaking out about Bay's birthday party and the lack of RSVPs, so he took it upon himself to invite "the good kids" in his class to Bay's party. He forgot to tell them the time, date, or place of the party, but he really wanted to make his brother feel special and that he thought to do so was great.

When he told Bay in the car, I caught my youngest son's eye in the rear view mirror. He'd teared up and was holding hands with his big brother, thanking him for being "the bestest big brother ever."

I asked Morgan why he invited his friends to Bay's party. He said, "Remember that party? The one where lots of people said they would come but only two did?.... that hurt my heart. I don't want Bailey's heart to hurt."  The party he spoke of was one where no one from any of his classes came, but two kids from his soccer team did. I didn't even know if he remembered; we don't speak of it. Clearly, he does remember and clearly, he doesn't want his little brother feeling that kind of hurt.

When Bay thought that he'd lost his kraken, Christmas, that same week, Morgan offered to lend him his extra Ted. People, that's huge. Ted is like an extension of Morgan's stimmy hands and soothes him. That he has another now doesn't matter- he was willing to spare him for a day or two until we could locate Christmas.

During Bay's birthday party at Chuck-E-Cheese (known commonly as the house of mouse hell), Morgan did really well. That is, until it came time to celebrate the actual birthday.

If you've never had the "rock star Chuck-E-Cheese" experience, count yourself lucky. Imagine four or five televisions blaring music, people yelling for you to sing, kids screaming in excitement, the birthday kids "rocking out" (see pics below), and a giant scary mouse wandering from person to person, giving out hugs, all in order to pump up the kids. It's sensory hell on earth.

During the rock out from sensory hell
Watching the show from a safe place
 So, while all of this was going on, one might wonder how Morgan was doing. He was just doing. He was stimming a lot by licking around his mouth, but he didn't want to leave. He said he wanted to "watch the show and Bay." But the noise hurt him, really badly. Morgan held tight to his daddy and Thomas held tight to him, with one hand over Morgan's exposed ear.

I kept asking Morgan if he wanted one of us to take him to a quieter place, but no, he wasn't having it. He wasn't missing out on his brother's birthday party- because "that's what big brother's do (his words)." So we let him be and let him stick it out, though we both knew he was in hell.

After, I high-fived Morgan for getting through that. He was sweaty and his face was chapped from all the licking he'd done. Bay told him, "Morgan, you did so great! Thank you!" Morgan grinned hugely and then when back to playing with his friend Baylee.

The point in all of this is that we as a community tend to put siblings of autistics on pedestals when they stand up to bullies, include their autistic brothers and sisters in activities, etc., but we rarely hear about how great autistics are for their neurotypical siblings. 

Morgan is the "bestest" big brother I could ever imagine for Bay. I would have Morgan 100 times over just to give Bay the experience of having a brother who is as sweet, gentle, and loving as his older brother. Morgan is never intentionally cruel to his brother, nor does he yell at or purposefully hurt Bay's feelings. If last week was any indication, Morgan goes out of his way to ensure that Bay's feelings aren't hurt. He blows the theory of mind concept out of the water and makes it invalid for me. 

To give credit where it's due: Morgan, so far, has been a great brother, friend, and role model for his brother. That's how siblings are supposed to be, no matter the neurology. 

Wednesday, January 8, 2014

Meet the Pundits

When parents or caregivers go to seek answers, not from doctors, they often turn to the internet now instead of just books. They end up on Facebook pages or groups. These can sometimes be hostile for those people.

There is a trend these days, especially in the parenting community- not just the autism community, though God knows it's happening here- to seek out advice and try to prove your argument or credentials to a profile picture on Facebook. I'm guilty of it. I've done it and, likely as not, will continue to do so.

The beauty of Facebook is that there are millions of people out there who aren't so different than you. The horror of Facebook is that there is always a person waiting to pounce on your answer, however innocently stated, and tell you what a bad person you are for saying something. It's an "all or nothing" approach which I don't completely comprehend.

I call them parent pundits. Some of them aren't even parents, which makes it all the more baffling. In the autism community, they are autism pundits.


Pundits, from what I can tell, attack a lot from their sanctimonious pulpits. They aren't unintelligent by any stretch of the imagination, they are usually very well informed about the topic which they speak. However, I find them to be closed off to any idea that is not their own. Bring up something which does not fit into their sphere of influence or thinking and you will burn. They are ideologues, if you will. Their followers tend to support them with something close to a cult-like zealotry.

An innocent question about anything from feeding therapy, ABA, to infant circumcision can have a person flamed by a pundit who doesn't want to educate, only spit fire from his/her bully pulpit, and then the attack is blown up by the pundit's followers who circle around and attack some more.

Tell me, how is this helping anything? Usually, the pundit defends his/her actions by saying that this is educating the parent. I disagree and will argue that the pundit loses the target audience (the parents, in this case) when he/she attacks because the audience feels verbally flogged. Sometimes I wonder if pundits remember that there are actual people attached to the screens on the other side, reading their militant diatribes against them.

Militancy can be virtue, but when people are coming to someone for help and getting flogged for it, it ceases to be an asset. Camps of thought are formed based on differences of opinion. To me, that's dangerous. To me, this means that there is very little gray area where people can meet in the middle.

Parents, when you seek out help, be careful what you are seeking. Be careful who you seek out for answers. If you feel as if you're being attacked by a pundit, move along.

They are not worth your time, emotional energy, or carpel tunnel syndrome.

Pundits, get over yourselves. You think that you're making some sort of change in the world. You know what happens when you keep screaming about your experiences and don't allow anyone in for additional input? People change the channel and move on. Personally, I don't care for being attacked. Debated, yes. Being razed over virtual hot coals? No thank you.

I'm going to keep doing what's best for my very happy child, as most of us are, and walk away. No one likes a zealot. Well, except for cult-like followers.

Is there a cult for bacon and cake?