Really Long Somewhat Self Indulgent Look into the Possibility of Being on the Spectrum

Ok, so I admit. I kinda raise a doubtful eyebrow when I stumble upon a blog by a self diagnosed adult with ASD. I’m not saying I dismiss them outright, but frankly, I don’t think I give as much weight to their words as, say, a famous mother with 3 kids with a paper trail of medical history and confirmation by a number of different specialists. Or, you know, Temple Grandin. (shrug).

Which I only mention because I was going to say, it’s a little ironic that I’m pretty sure I’m a little autistic.

Haha!

I always find taking the online surveys a little… hmm. That’s a little unscientific, isn’t it? I mean, as much as I know myself, having a certain perception and then answering somewhat subjective questions about vague subjects can only be so effective. I mean, seriously, Simon Baron Cohen’s test isn’t that much different from some “online personality quiz” I remember from my teenage years. I’m not trying to just be a total hater, I guess the point I’m trying to make is that I’m not exactly sure, I’m ignorant about if there is a good way to assess an adult for ASD without relying heavily only on information provided by said adult.

I have to say, I’m pretty okay in life. I don’t uh. Struggle daily.

I don’t have very serious sensory issues, although there are a couple of very specific sounds that incapacitate me. The sound of windbreaker material, nylon, the absolute worst sound in the world- the dreaded trapper keeper notebook being slid across a hard floor… These sounds are pretty easy to avoid, at least (especially now that I’m older and almost never come across trapper keeper notebooks!) but my reaction left such an impression on my parents that when Wylie was diagnosed, and my dad started looking into things, he said to me “I think you’re autistic! Those sounds you couldn’t stand! I never, ever, ever understood it! Wouldn’t it be funny if there was a biological answer to your weirdness?”

Well, Dad. Indeed. Shit.

What I mean is, I am interested in how close to the spectrum I fall, er, not because of something I need now. I don’t necessarily feel I need any sort of treatment at this point (maybe for my forgetfulness and distractibility… and rage… hmmm… but that’s it! Haha).

It’s just I think I spent a lot of time and effort and suffered a lot of heartache and misery looking for answers that I never found. And I gave up and focused on my behavior at one point and my life wasn’t miserable anymore. And then Wylie was born and all the crap I couldn’t achieve for myself because I was so fearful of trying, I suddenly resolved to have the strength to do for Wylie. It’s hard to really understand what I mean by all this without seeing exactly how out of control I was in my earlier years of “adult”hood and how CONFUSED I was as a child.

A memory that has had me puzzled for a very long time- a memory, I admit, probably isn’t as clear as I think it is. I am very aware of the fuzziness of memories and it’s always something to note. I’m talking about kindergarten and first grade, here. It was a private school, and there was one kindergarten class, but for certain activities, we broke up into groups named after animals. We lived in the desert, so names like “Roadrunners” and “Scorpions.” For whatever reason, by some formula I NEVER understood, these groups would change from time to time. I mean, what the hell, one day I would be a roadrunner and the next day I would be a scorpion. Which, okay, so what? Well, the so what is that everybody else knew what group they were supposed to be in.

It was a big deal. I couldn’t figure it out. I was a good student. That’s an understatement- I remember skipping to advanced classes, testing significantly higher than my peers… I could not, for the life of me, figure out what group I was going to be in from activity to activity. I remember being so stressed out about it. Do you know what I DON’T remember? Asking anybody to help me figure it out.

The trait in Wylie that most reminds me of myself is his natural assumption that the best way to work out a problem is by himself, on his own. It is probably because I am so familiar with it that I find it so endearing. I think this is indicative of ASD, in all honestly. I watch the faces of the kids at Wylie’s school and I can read their minds.

“I want that cookie… but there is some sort of obstacle in my way. I will try evasion first and make a swipe for the cookie. Foiled again! Hmm. How frustrating. I think I’ll scream.”

“What is it this thing wants from me? I really want to go into the breakroom, but I am being stopped for no apparent reason. Now I am angry, and I will stiffen my body up and sob.”

I understand the perspective. And the inner dialogue. It’s different when you are not naturally inclined to socialize in order to achieve goals.

Another school incident I still think about, um, quite a lot (jeez, I should learn to let go, lol) is in the 6^th grade we had these math problems. Now I am a WHIZ at some math. I love me some math! Not to toot my own horn, but I was definitely smarter at math than most of my peers in the 6^th grade. We were trying a new program out that was modeled after some Asian Math programs (I know, a little racist of us, but hey) where there were levels of math problems broken up and students were basically self paced on different leveled worksheets, like level 1-20. I was flying through these worksheets. We (us students) were all graphed on a poster and I was, like, WAY in the lead.

And then I got to one worksheet. I don’t remember the details except it was a triangle and it had missing measurements. You absolutely, 100% needed these measurements to solve the problem. We were NOT provided a ruler.

Everybody flew past me. I was stuck on this problem. Now, in my old age, I realize it was probably okay at any point to ask for help from the teacher. At the time, however, my teacher finally approached me to ask about something traumatic happening at home, because, like I said, I was a math genius, and I suddenly stopped doing my math work. “No, I’m not being beaten,” I said matter of factly. “It’s just that this triangle is missing a measurement.”

“Well,” he said, “Luckily our brains are bigger than Lucy’s” – a reference to the primitive humanoid bones believed to be our first ancestor—“And we can assume this is *this* many inches and this is *that* many inches. Now can you solve it?”

I did solve it. Because I finished it, I got to keep the worksheet and I went and retrieved a ruler. It was not drawn to scale. I am absolutely still annoyed to this day.

So yeah. I have these memories. And they really make me think.

In the beginning, there was Chaos.

My journey with autism did not begin with diagnosis. In one moment, I knew immediately what was wrong with my son. I remember the feeling because I had only had it once before- a year and a half earlier, right after Wylie was born. Then, the doctor had said he was shaking a lot. He WAS shaking a lot. Something they saw a lot in premies- but Wylie was a bowling ball, ten pounds. They took him away for observation. Talked about maybe seeing a neurologist. I felt the blood drain down to my toes and I crumbled.

And I crumbled again, that day in June, when my unease with Wylie’s behavior finally peaked.

He was always odd, really. I watched him all the time. I’m that type of person, you have to know. I remember right about the time I found out I was pregnant, we got this baby collection in at work. There was a plate that read something about “The Perfect Baby.” It really struck me as… wrong. Haha! I just remember reading this stupid plate, that went on about “Ten perfect fingers and ten perfect toes” and I just laughed sardonically, thinking about some idiot buying it for their pregnant friend, who would go on to have some nine toed baby. I mean, really. What if the baby had a cleft palate?  Did you really want to give someone a gift which implied that for a child to be “perfect” he would have to be aesthetically typical? It was offensive.

So, by the time we had our hospital scare with Wylie, I was on high alert; a little high strung about milestones and typical behavior. I don’t dwell on the negative and I’m not much of a real worry wart- I have always just found comfort in being prepared for the worst case scenario. And when it came to Wylie, in hindsight I just remember strong gut reactions to certain mindsets that just didn’t sit right with me. For example, the only “milestone” Wylie reached late at this point was crawling. I was kind of a drill sergeant with “tummy time” because of this and my mom would just scoff. “Kids eventually talk. Kids eventually walk,” she said. I remember thinking, “Well. That’s just ridiculous. Some don’t. SOME don’t!”

But Wylie crawled at 8 and a half months, and walked at 9 and a half months, and said “Uh Oh!” when I dropped his bottle a week before his 1^st birthday. “Mama” and “Pretty!” and “Thank You!” and “Ball” and “Doggie” followed. By the time he was 15 months, he had 15 words, and I stopped worrying. It’s laughable now- the feeling of relief I got. “There’s nothing wrong with my baby. Look, he’s talking!” Actually, talking quite a bit!

And then he just stopped.

I remember not wanting to believe he had really stopped talking. I say a lot that Wylie stopped right after his shots (not because I really believe there is a correlation, but I do think I get why this false cause fallacy is so hard to overcome, because so often a set of shots coincides with regression) but… I DO remember bringing it up with his doctor at the check up. I remember saying “He isn’t saying them as often, do you think he’s just kinda moved on now that he knows them?” She responded reassuringly, by the way.

He did not just stop talking. He stopped interacting with me and my husband. We didn’t really think of it that way. He was just suddenly very hard to please. It was still pretty easy to elicit a smile from him- we would make faces or throw him around a bit, having him fly through the air. But he ignored us, and he wouldn’t come to us. I would call him over and over, just to get no response. I could not get his attention.  He wouldn’t play with me. I remember after all the baby clothes and expensive junk just GIVEN to me, just like that, from strangers, the moment I began to show, I was so exhausted with material things I was sure I was ready to go all “Spartan baby” and not do birthdays and presents until Wylie was much older. And then here I was, a year and a half later, and I would comb the stores and online for the perfect toy. Something that Wylie would like. Cuz like I said- he was so hard to please, and he didn’t like any of his toys.

Every time I read on the internet about the early signs of ASD and I get to “lack of joyful expression” I always feel this does not represent Wylie at all- he’s FULL of joyful expression and always has been. But at the same time, I remember that was what I thought was wrong. Somehow I had an unhappy baby. Not overly unhappy- he wasn’t crying all the time. He just didn’t seem to do anything, or have any fun. He loved Spongebob. That’s about all he loved. And I remember getting so fed up with both him and Spongebob that I snapped the TV off one day and said “NO MORE SPONGEBOB!” Ha. That was that. Foot down.

He took my hand and brought it to the TV. “Not a chance!” I thought and dropped my hand dismissively. He took my hand again and brought it to the TV. And like that, my brain seemed to “click On.” My heart started racing. The article. The article about the earliest signs of autism. A little boy wanted a cookie, so he brought someone’s hand to the cookie jar. But he never looked up. He never made eye contact. I looked at Wylie and waited for him to make eye contact. He never did. The blood drained down to my toes again. I thought, “Oh. He’s Autistic. I have an autistic child.” And that was that. I never thought differently again.

It was another month and a half before he was diagnosed, after his pediatrician shrugged off my concerns initially and then looked paler than a ghost a month after that, when Wylie flunked his MCHAT miserably (“2 red flags or more would concern me. Wylie had 12,” she said, glossing over the fact I had an MCHAT in my hand filled out a month before and she wouldn’t look at it…). I cut her off when she tried to stammer through developmental pediatrician recommendations- I had already made an appointment. Because I knew already. The very next day, before our two hour evaluation even began, the developmental pediatrician knew, too. We had our answer. ASD- moderate to severe. (Whatever that means. Maybe nothing.)

Sensitive

I'm a little surprised with myself.

I'm all bent out of shape over the ignorant comments of some high school student. She is completely ignorant. She is completely wrong. She's really of, like, little value to me and it was really not necessary to educate her because she kinda means nothing to me (we're not friends or peers, I mean, I have no intention of nurturing our accidental relationship), but maybe because I've been all gung ho about defending "autism awareness month" I felt it noble to live up to my promise to try to educate people.

She actually sounded like she was looking for an answer. I listened to her prattle on about some kid from her school, who she "knew" "must have been" "mentally retarded." But, but, she was puzzled! He talked in a high pitch voice, made strange, repetitive movements, had an awkward gait, but his vocabulary was advanced. He seemed to have uneven skills. How strange this obviously mentally retarded person was!

...That isn't even what bothered me. It was her complete rejection of my response, which was rather polite, if I do say so myself. When I suggested her assumption about other individuals' mental capabilities may be off base, she rolled her eyes and got sarcastic, and then explained to me how very smart she was.

...Wow. Writing this out was very theraputic. I feel better now. Haha. I mean writing it out, I realize it's her problem, and not mine.

I think I'm officially over Autism Awareness for a while, anyway. I have no heart for it anymore.

Wylie was cute and clingy with me tonight. I kind of brushed him off to finish a school assignment, and told daddy to hang onto him (we were all in the same room together.) His whining and frustration with his father was irresistible, however, and I let him climb up on my lap while I struggled to reach the keyboard.

Day in the Life

So Wylie and I are sitting on the floor playing in a living room while my father is watching TV in the same room. Wylie has a deck of cards, that instead of typical suits has pictures of Spongebob characters, spread out on the floor. He picks up a card with a picture of a snail on it.

"Gary!" he cries rather enthusiastically.

"That's right, Wylie, that's Gary," I say.

"Is that Gary? Did he pick out Gary?" my father asks me, a bit surprised.

"Oh, yes, he knows ALL his Spongebob characters. Watch!" I pick up a picture of the squid and show Wylie. "Who is this?"

His face brightens. "Wuh-Wur!"

"Yeah, that's Squidword!" We try a few more. Ba-Ba (Spongebob), Pa-pri (Patrick), Annie (Sandy).

"Wow! That's pretty impressive, Little Man!" my father tells Wylie.

"Mmm hmm!" I say, with light hearted sarcasm. "Wylie, where's your 'Mama'?"

He thinks for a second, then points to himself and cries, "Mama!" My dad howls with laughter.

Autism Speaks and Autism Awareness Month

... I'm getting more and more uncomfortable with Autism Speaks. I'm not sure I'm against their research efforts completely- I've always maintained that I think there are problems associated with ASD that should be improved upon and even avoided. I find it unfortunate to frame the issue in terms of erradicating all autism, however, and I don't like how it's such a feel good issue. People donate money to Autism Speaks. Toys R Us is donating a portion of their proceeds to Autism Speaks. I don't like that people take it at face value that if they contribute to Autism Speaks, they are helping those with ASD, and the families of those affected by ASD.
I originally thought this Autism Awareness Month and all the blue stuff was bigger than Autism Speaks, but it really rubs me the wrong way that people could REALLY use some charitable efforts, you know, treatment is expensive, and Toys R Us gets to make all this money, and Autism Speaks gets to spend it all on developing prenatal testing methods if they want, and the people buying their little princess a cool toy get to feel all warm and fuzzy for "helping autism" and people affected by autism get to lose valuable time because they cannot afford ABA or Speech Therapy or Occupational Therapy.

I know, I've been coming off a little entitled lately. I just think if people want to feel all warm and fuzzy, they might as well actually help the ASD community a little bit.