Maybe it’s the lack of sleep, or the overwhelming amount of crap on my plate (that, incidentally, I put there myself) but I am f’ing done these days, and that is making for a real lack of patience on my part at the moment, especially with anyone other than my immediate family – or my dog. This was particularly apparent to me personally (though thankfully not obviously) the other day when I was speaking with an acquaintance of mine and I happened to mention that Bean is autistic. I was met with disbelief “not the blond girl I’ve met? Not her!” – yes, her. “but she doesn’t act autistic!” – yes, actually she does.
But instead of acting annoyed I took a deep breath and explained (as I have so many times in the past 5 months) that autism is a spectrum disorder (condition if you prefer) and that although my husband and I both thought autism could never look like it does with Bean, we have since learned that autism has many faces and it isn’t at all what we thought it was. The acquaintance nodded in the right way and said “of course” in that understanding tone and then asked, as so many do “in what way is she autistic?”. I appreciated her interest in the subject and if I wasn’t so worn out at the moment or tired of everybody, even many friends and family members, questioning the diagnosis (or quietly judging me for becoming so involved in researching autism and Asperger’s so intensely) I would be able to see this situation as a positive one where I was able to educate someone and not just as a hassle in having to explain it, the same scripted speech, again and again, over and over.
When people think of Asperger’s they think of someone who can’t look you in the eye and has no social skills. And yes, lack of eye contact and poor social skills are currently part of the diagnosis criteria in the DSM IV. Aaaand Asperger’s is determined by the criteria in that book, true enough. But even that criteria is questionable (and often not the distinguishing factor for a diagnosis by professionals who are experts in the field of AS) when we look at the differences between girls and boys. The criteria is also flexible and changeable when we see that there is a diagnosis of Atypical Asperger’s (one of the five subgroups of individuals under the diagnostic umbrella of PDDNOS) available to those that meet most of the symptoms of AS, but not all. With this knowledge you can see that AS is much more complex than many realize – and that brings me to cardboard boxes.
Yup, cardboard boxes.
Bean has a thing with cardboard boxes. I’ve never really put much thought into it – don’t all kids like cardboard boxes? “Buy a kid the most expensive present and he’ll end up playing with the cardboard box”, right? Sooooooo true.But Bean has a *thing* with cardboard boxes. She keeps them. As in, she never throws them away. Not. A. One.
Her room is filled with tattered old cardboard boxes. Some so big I have to walk around them, some so small I have to be careful not to step on them. And of course nobody else is allowed to play with them, or move them, or even touch them. They are treasured by her, these cardboard boxes.
And it’s great, it is, because she uses her fantastic imagination to create almost anything out of them. She paints them and cuts out holes in them and suddenly they are much more than just cardboard boxes. They are homes for her Beanie Babies, and fast cars she drives in. They become cardboard laptops and cages for wild beast. There have even been times she has traveled to the moon and back like Little Bear, but mostly they are tiny beds or Kleenex box caves filled with GoGo’s or Littlest Pet Shop‘s.
And yes, it’s great, it is, because she is proving once again that the limited range of thinking that society seems to be trapped in when it comes to autism, their assumptions and their beliefs about what autism is and looks like is just that, limited. The perspective must change and expand to include things that they don’t normally associate with autism. Things that they think, if a person with an ASD has, (things like imagination, eye contact, empathy, friends…) actually disprove that the individual has autism.
I’m one of the guilty ones. I’m one of the ‘they’. One of the ones that pictured “Rain man” when I thought of autism. One of those ‘they’ that disagreed with Bean’s diagnosis at first because, come on! How could she have Asperger’s!? She doesn’t “look autistic”! She doesn’t “act autistic”!
My limited knowledge of ASD created in me such a closed minded view of autism that even though there was something obviously ‘more’ going on with Bean since the age of about 3 and a half, I never in a million years thought related it to autism.
I didn’t understand, or know, that autism ever had any other appearance than ‘Rain Man‘.
And even though I myself am new to the position of ‘person aware that autism comes in many more forms than just one’ (a recovering “they” you might say) I am already getting sick and tired of having to convince people that Bean has an ASD. I cannot tell you just how much I loath explaining, nay defending, Bean’s autism.
Bean brought down her collection of cardboard boxes into the kitchen the other day, she refused to share them (of course) and if someone moved them a meltdown of epic proportions would occur. I asked her to bring them back up to her room – fair enough request I would say. She ignored me, so I asked again. She refused, so I asked again. Finally we were arguing about the placement of these f’ing cardboard boxes so ridiculously, and she was being so rude about it, that I threatened to throw them out if she didn’t apologize to me and do as I asked.
She had a game going, a good game. A game she was really into, a game in her own World. I know now that she had become agitated long before I told her I was going to toss the boxes out. She was already headed into the red zone the moment I interrupted her game, the moment I pulled her out of her own World. So when I decided to use my mom-power to control the situation with a threat, she was no longer able to withhold her frustration. We went back and forth for quite awhile, even while I was speaking gently and explaining that she could keep her boxes if only she would take them up to her room and apologize for speaking to me rudely. Even then she was too far gone. It took 40 minutes. Finally I gave in and let her keep the boxes without making her adhere to my requests, I needed to just stop her pain. Because it was pain, it really was.
But these are not just cardboard boxes to Bean.
If you had walked in just after this 40 minute ordeal you would never have known what had just gone on. As soon as the boxes were safe > she cooled down. In fact she switched, like a light switch, from major meltdown to totally calm and pleasant. She even brought the boxes back up to her room and apologized for being rude on her own accord. And if that is what you saw you would think that she was just a “normal” kid, but there is no “normal” setting (and thank God for that). As was written by Elizabeth Moon, and was so perfectly put, “normal’ is a dryer setting“.
So, Sigh. It doesn’t seem to matter how many books, articles or blogs are written on the subject of ASD’s being on a spectrum, (key word here: spectrum) the majority of the ‘they’ still don’t get it. What’s perhaps most disturbing and detrimental is that within the autism community itself there appears to be a constant undercurrent of competition over whose relationship with ASD’s is the worst.
I once read a comment on Diary of a mom’s blog that pretty much said that anybody with anything higher functioning then classic autism in comparison to classic autism was like comparing paper cuts to amputation. Wow. I cannot help but think that it is this type of mind set is what enables general society to go on with their ignorance about Higher functioning forms of autism. It’s mind sets like this that belittle what I go through every day.
I have never had twins, but I do know the challenges of parenthood in my own way, from my own experience with being a parent? Yes, of course I do. Maybe you lost a parent to disease or natural causes, I lost a parent to suicide at 17 – is my pain worse than yours? No, it’s not.
It isn’t worse or better because it can’t be worse or better. These are our own experiences, our own, and we cannot compare because we have not lived both lives and very few of us ever will.
Not experiencing someone else’s life struggles does not make your own struggles any less valid.
HFA, AS, these people are still autistic, believe it or not – it is what it is.
I love this caption under a picture of three sisters in this great article: “If a person with autism can smile, make eye contact, and be affectionate, does that mean she’s no longer autistic? Nope.”
I so wish that instead of seeing people with higher functioning forms of ASD’s as a detriment to those that “really need help”, perhaps we can see them as a voice into what it feels like to be autistic. A voice for those that don’t have the ease in which to communicate their needs and their wants. I say ‘ease’, but you know what I mean.
My child is autistic, and she is also creative.
My child is autistic and she is also dramatic.
My child is autistic and she can also have a conversation with you, she can also look at you and laugh with you and play with you and care about you.
My child’s autism is her autism, it is just as similar to others on the spectrum as it is dissimilar to others on the spectrum. Whether you see it or not, the autistic part of herself is herself, just like her ADHD. it lives in everything she is and does. And sometimes that will look ‘normal’ to you, and sometimes it won’t. But that makes it no less true, and certainly no less real.