Autism in Girls Links

I thought it might be a good addition to the previous post to link to some of the blogs around the internet either run by women with autism or mothers of girls with autism. They can certainly give a much more in-depth and relevant insight into female autism then I can. So here are some of the top female autism blogs:

• First, a good bloggy friend of mine: Sandy at Aspieteacher. She is a successful Aspie who has some excellent insights into the autistic world and how Aspies can learn to naviagte the NT world. If you’re not subscribed to her feed, you’re almost certainly missing out.
• Next, Bev at Asperger Square 8. A huge neurodiveristy advocate, Bev manages to combine humor and insight to create quite enjoyable posts. And while you’re there, be sure to say hello to Squawkers.
• Next, Quirky Mom and Apple at When the apple doesn’t fall far from the tree. A double dose of Aspie females, this sight will give you much needed insight into both what it is to be and what it is to raise a female with Aspergers. If you need something to crack you up after a long day of work, this post is particularly amusing.
• Next, Stat Mama andReese at Static Vox. Here you have the rare treat of a quadruple dose of autism (mom, dad, and both kids). A very interesting read about a full-spectrum family making it work.
• Next up, Hannah and her mom at Adopting the Spectrum. A little girl making her way in the world with Asperger’s, Hannah is not one to let her diagnosis hold her back. In fact, last week, she was given an unprompted invitation to a birthday party! For those with kids just starting out, this is a great site for day-to-day stories of raising a young girl on the spectrum.
• And, Charlotte and her mom over at Good Fountain. Charlotte is an autistic 4-year old, and it is always amusing to read new anecdotes about her. I think anyone who’s worked with children, autistic or not, can relate to this post. I also really like the catchphrase: Discovering our version of typical.
• Can’t forget Kendall and her mom over at Diary of a mom. This blog was the first one I ever subscribed to about a girl with autism, and I still enoy reading it ot his day. Kendall’s mom has some great shots of both her girls up this week, one of whom is now a model for Ralph Lauren. I hope you enjoy this one as much as I do.
• Finally, Joy and her mom at Elvis Sightings. Joy is another little girl with autism who is always surprising her parents with new skills and abilities. Another great site for parents of girls just getting their bearings in the world.

Who are your favorite bloggers for information about female autism. List them in the comments and I’ll put links into this post.

Some bloggers readers  enjoy:

• Afbh at Whose Planet is it Anyway? is a fierce neurodiversity activist and a woman on the spectrum.
• Amanda Baggs at Ballastexistenz is an autistic woman with a very strong spirit. You should be sure to check out her video, In My Language, about how she communicates despite being nonverbal.
• Dora Raymaker at Change.Org. She is an autistic woman and a board member on ASAN. She shares this blog with Kristina Chew, a parent of a young boy on the spectrum.

Autism in Girls

In the Monday night social group for elementary schoolers, we have 10 kids. Of them 8 have autism. Of the 8 autistic kids, one is female. Most of the boys (except perhaps a 12-year old Aspie) are relatively obvious. There are tell-tale sign like spinning and stimming and refusing eye contact. If you walked into the room without any indication of where you were, you’d probably identify six kids with autism, and one with a conduct disorder. You’d almost definitely miss Jess, or if you noticed her, you’d probably mark her down as just a quirky kid.

   Jess doesn’t exhibit any of the traditional symptoms. She doesn’t stim or flap. She makes eye contact, she can hold a two-way conversation. As a result, we (the aides) often forget she has autism. And then we tend to attribute some of her less traditional actions (highly protective behavior, trying to act the parental role in convos with other kids, inappropriate touching (not as in private, but as in poor timing) of other kids in the group) to misbehavior. And that’s not fair to Jess one bit.

It would be an understatement to say most of the aides aren’t major fans of Jess. One strike against her is her age, 11, which makes her five years older than all but two of the attendess, Jay who has stolen everyone’s heart by describing his imaginary nation, Dino Land, and the 12-year old Aspie whose  mom seems to bring him only as a form of punishment for us and him. Another is her independence; since she can talk and draw and participate in all the activities unaided, she almost never has a one on one, compared to some of the hyper non-verbal boys who can get three for one evening. Without this interaction, none of us have really developed a relationship with her.

But third is definitely that we simply don’t understand Jess. We’re all far more familiar with kids like Charger and Lawrence, kids where you can see past the autism and into their amazing selves, but not kids where the autism has become such a thin sheet that we miss it altogether. We can saythings like, ‘Hey Bud, a marker is not for eating,” a thousand and one times, but what do you say to stop a kid from screaming across the playground “X….Y….Z…, you get over here right this instant and finish playing,” the way Jess does. Her differences require more tact, more patience, more attempting to get inside her head and figure out what is making her do particular activities and thus how we can redirect them.

The worst part is, I feel like she knows this. Yesterday Jess arrived before all of the other kids except Dusty (one of the hyper non-verbals). And as I stood and swung Dusty over again and again and again, not a single aide walked up to talk to Jess beyond a “Hi.” And then the moment Charger walked in, everyone ran over and gushed over him. It was awful, but admittedly, I didn’t want to go and talk to Jess either, not when there were younger, more adorable kids to play with. But that’s not right. We’re the grown-ups and its our responsibility to be inclusive to all the kids, not just the ones we like, or the ones who are easy to include. If we can’t set the example of inclusion, how can we expect the children to learn it?

I’m well aware that Jess’s presentation of autism is not the only one out there among females. There are girls who look and act very similar to the autistic boys I’m more familiar with. But she does represent a solid front of female autists, one which includes the likes of this girl from the famous magazine article, “More than Just Quirky.”

As autism awareness month draws to a close, some of us may need reminders that autism presents differently in everyone, and that in many cases, it presents extremely differently in boys. We need to take the time to get to know some girls with atypical autism, to find out what makes them tick, and how we can help them specifically. As the diagnostic criteria get more sensitive, we’ll start to see more and more of these girls with the atypical autism label, and we need to be ready for them when they come. As for me, I’ll start by sitting with Jess at group next week. I feel she can teach me far more then I can teach her.

Seeing in Black and White

People talk a great deal about the variety within autism. With 12 different characterstics and only 3-4 needed for a diagnosis, there are several hundred possible different presentations of autism. But it goes even beyond that, because two people who share one common trait may not express that trait in identical or even similar manners.

Take, for example, black and white thinking. It’s a big hallmark of ASD and one that Carl and I share. But our presentations of that trait look nothing alike.

Carl is very black and white when it comes to morals. He is very biblically oriented, and there is no space for questioning or grey area in his mind. Alcohol, tobacco, drugs, all bad. Homosexuality, abbhorent. He’s pro-life even in cases of rape and incest, and if you ask him why, he will give you the point blank answer of, “It is wrong to kill babies. Period.” He refuses to let anyone drink in his presence, which in my house means more often then not that he’s the one leaving. He thinks individuals who drink or toke are inherently bad people, because they are participating in a wrong act which makes them wrong too.

I have much more flexible morality. I don’t think there is harm in a few drinks or a joint or two. I think people can do things I disagree with and still be good human beings. I’m willing to entertain the thoughts of others even when they directly conflict with mine.

But I am very black and white when it comes to my opinions about people. In my book, people are either good and worthy of my praise, or awful and worthy of my criticism. And when a person flips from one to the other for some reason, I get stuck on that flip. Take, for example, my Health Psych teacher. When the semester started, I hated her. I didn’t like her accent, her clothes, or her demeaning attitude. I couldn’t stop bashing her. Then she offered me a position in the lab. And I had all sorts of wonderful things to say about her. Then she rescinded the spot, called my TS unproffessional, and called me a clown in class. Every time I think about her I seethe, and everyone withing ear shot hears about it.

Carl is far more forgiving. You could cancel on him four times in a row, and he’ll be just as excited when you come on the fifth. He lets all people hang in the grey area (unless of course they drink, use drugs, or make any sort of comment that might slightly be construed as derogatory toward a minority group).

How about you? Are you or is your ASD child a black and white thinker? How does this inflexibility present?

TIP 2: Clumsiness and the ASD child

Listening to parents, reading through the literature, and heck, just watching the kids, you’ll notice a common trend: autistic kids are clumsy. Oddly enough, this tends to be specialized by diagnosis (with Aspies having worse gross and fine motor control at 15 then HFA’s. In fact, it is one of the few things that can separate those with an Asperger’s and HFA diagnosis at that age. And yes, you have my permission to cite that handy fact whenever you’re informed that Asperger’s is not a real disorder, while autism is.) But I have seen little speculation as to why there is that separation, and I’m not going to try to address that here.

However, what I do think is important is the fact that autistic kids tend to be clumsy, and there has to be a reason for this. One of the biggest contributing factors, in my opinion, is our poor proprioceptive sense. Proprioception refers to knowledge of the body, specifically where the body is in space. If you have a typical nervous system, it probably is one of the senses you think least about. In fact, when asked to list the bodily senses, unless you have a deficit in one or are studying them specifically, you’re almost guaranteed to miss vestibular (balance and head-orientation) and proprioception. But for many individuals with autism, proprioception is a very big deal, mainly because ours tend to be terribly deficient.

If you will, humor me for a second. Hide your arm behind or under something, and your hand behind or under something else, so that all you have showing is a bit of forearm. Stare at that bit of forearm and gently wiggle your fingers. Note that the forearm doesn’t move. Now for most people, despite not being able to see the arm moving, there wold be no reason to believe that the forearm is not your own. After all, you can most likely feel it, from the inside, and thus know it is there. If you have an ASD however, this situation might utterly confuse you. Just yesterday I grabbed my forearm with the extent to remove it from the area where I was trying to sleep only to realize it was, in fact, my arm. Oops.

Dr. Sacks (one of my favorite authors) writes about a similar case in “An Anthropologit on Mars.” The story is titled something like, “The man who threw himself out of bed,” and is about a man who loses sense of self v. non-self and thus throws himself off the bed when attempting to get what he believes to be a mannequin’s leg off of his bed.

Now consider how this relates to movement. You’re walking along the hallway. You know where both your legs are in space because they’re moving. But your arms, well, they could be anywhere. You’re left with two options. A) Stim. B)Accidentally ram your arms into things because you didn’t realize your arm was about to come into contact with something. (This is one of the reasons I highly suggest against stopping stimming. Though it looks purposeless to you, I promise, it has meaning to us).

What can help? Compression clothing is a nice option because it provides constant proprioceptive input. Puffy/spiky chair cushions are quite handy when sitting. Something to carry in the hands provides pressure and thus input (you notice that common trend of wanting an item in both hands? This is part of where it stems from). Stretching the muscles often can provide a bit of an ache which can be rather helpful.

Can anyone relate? Or totally disagree? Have any suggestions on how you get proprioceptive input?

Retarded isn’t Stupid, Cale!

I have a confession to make dear readers, and I hope you all will forigve my stupidity. For years, I’ve been saying to others, “Yeah, my brother is diagnosed with mental retardation. But he’s not retarded, he’s actually really smart.” And I  was reading Mama Mara’s “Retarded isn’t stupid, Mama Mara” post, and it dawned on me that what I was saying was rather illogical. Saying, “he’s not retarded, he’s actally really smart,” is a bit like saying, “he’s not short, he actually really likes the color orange.” The second half of the line does not prove the first, it is really rather tangenital.

Carl is developmentally behind. At 24, he seems roughly 14 plus or minus a year or two. So yes, he has, by definition, mental retardation. But that has no bearing on his being stupid or smart. He puts things together I would totally miss. He comes up with ideas that I’d never thought about. He thinks deeply about politics and religion and all those other rather philisophical issues. Is his understanding a bit reduced, perhaps a bit simple? Probably. But working with what he has, he comes up with some awe-inspiring insights.

Hence forth, I shall ban the problematic thought from my vocabulary. When relevant, I will say, “Yes, my brother is retarded, and he is also very smart. Would you like to meet him?”

TIP 1: Why smart autistic kids fail in school

Autistic individals are inherently good learners. When something interests them, they can memorize the information and parrot it back without a modicum of difficulty. So why do so many do so poorly in school?

There are two main culprits: lack of motivation and poor learning environments. And although lack of motivation is important, it is also rather complex and difficult to address in 1000 words or less. So I’ll get back to that thought in a later post. No, what I want to talk about now is the poor learning environment ASD kids find themselves immersed in, aka ‘the classroom’.

At first glance, the classroom doesn’t seem like a particularly problematic environment. The rules are relatively simple: you sit in your seat, listen to the teacher and take notes, raise your hand to ask and answer questions, and then grab your books and move on to the next class. If everyone else can do this effortlessly, why is it next to impossible for the ASD child?

• Sitting in your seat: For the typical child, staying seated is a rather easy feat. But when you have autism or almost any other neurological difference, it becomes far more difficult. First, the seat is rather flat and bland, so there’s no real proprioceptive input. The light above your seat might flicker or whir and that will distract you from the lesson. What is going on out the window is likley far more interesting than what it written on the blackboard, and you need to devote a ton of energy to reminding yourself it is not okay to get out of your chair to look out the window. Your pencil might break and then you have to try and recall the list of when and how to leave your seat to get your prencil sharpened without getting yelled at for disrupting the class.
• Listen to the teacher and take notes: More often then not, your auditory processing capabilities lag a bit behind your peers. By the time your teacher reaches the end of a sentence, you’ve just begun to process the beginning. After a five minute lecture, you’re likely five or six lines behind, and you eventualy just have to give up in frustration. Not to mention that the kid tapping his pencil behind you and the radiator turning on and off and the cars outside the window and the pens on paper, chalkonblackboardsteachernextdoorgirlwhowhispersboybitinghis nailsitsall TOO MUCH for you to process out and try to listen to the teacher. Then there’s the note-writing process. Your pencil grip was never quite perfected and no matter how slow you go you can’t make the letters look the way the teacher does. You keep going back to make the letters and edges line up just right, and your notes are getting even further behnd. After a full period’s lecture you might only have half a page of notes because of all the competing processes your brain was trying to complete.
• Asking and Answering Questions: This one seems easy enough. The teacher asks a question and you raise your hand to answer it. But this is a social situation, and like any social situation there are a ton of rules you haven’t seemed to figure out yet. Does the teacher want a sentence delivered after a hand-raise or a called-out group response? How much is too much to say? How often should you raise your hand, especially if you know the answer to all the questions? What do you do if for five questions in a row the teacher ignored your hand? And then asking questions brings a whole additional round of confusion. Is this a good during-class or afterward at the teacher’s desk sort of question? How many questions is it okay to ask during one period. What if you have a really strong point but the teacher doesn’t call on you until the conversation has moved and then it sounds tangenital? What if it takes you awhile to get the question out and by the time you finish the teacher has tuned you out? What if you start talking and then realize the kid behind you was the one actually called on and he’s talking too?
• Grab your books and move on: Once you come to middle school, you’ll probably do this between six and a dozen times a day until you finish your formal education. This has a list of landmines in it. First, that bell that signals classes to change is terribly irritating to your sensitive ears. Moreover, if your watch is not exactly in sync with the office’s clock, the timing of the bell is completely unpredictable, and everyone knows how you react to surprising loud noises. Then you have the issue of leaving your class. If you didn’t finish the sentence you were writing, or have a comment to add to the topic that is being discussed, it is hard to decide whether or not to leave. Then you need to remember all the stuff you have, like glasses, jacket, backpack, books, pencils, pens, and especially the ones you lent out, how do you politely ask to get them back? Then you need to figure out which books you need for your next class and remember if you put your hw in your binder or your homework folder. Not to mention you have to navigate the hallway without running into people, remember your locker combination and have the dexterity to open it smoothly, and then find your way to your next class. And what if someone is sitting in your favorite seat? Or the teacher invited a guest speaker and forgot to tell you and now you need to quickly adjust to the fact that the class is running off schedule and no one prepared you for it.

These are just a few of the issues that the ASD student faces in an average day in the classroom. If you had all these challenges to overcome just to make it through each day, how well do you think you would be performing in school?

An Intro to TIP: a new feature

Monday night I went to watch a panel entitled: Autism and the Family Dynamic. I was told it was to include spectrum teens and their families, but there in fact was no autist on the panel, and most of the parents on the panel had young children. As I listened to the panel members answer questions, I started really wishing they had an autistic panel member up there. Just one person who could offer an ASD point of view. Because although the parents were being sympathetic to the difficulties their children were facing, they could not be empathetic. They never experienced the situation, and they were really as much at a loss to explain things as most of the audience. As I listened, I took mental notes about what I would have said if I were up there. And thus, I bring to you, a new series: Thoughts Inspired by the Panel (TIP). The first TIP post will be tomorrow.

When “autistic behaviors” aren’t autistic after all

If you were trying to identify the classic, immediately observable signs of autism, you’d probably come up with two right off the bat:

• Stimming
• Scripting

And it is true that most individuals with ASD engage in these behaviors. And if you see them in an ASD child, you’d probably say, “Oh, well it is a part of his autism.” But what if it isn’t? What if it is simply a part of his humanity/personality?

Yesterday I attended the Autism Family Panel (which was disappointingly stocked. It was designed to be a collection of spectrum teens and their families, but there wasn’t a single autist on the panel.) I pretty much knew everything they were going to say, so I sort of tuned out the voices and focused on watching the parents themselves. And this was  fascinating experience. Each mom (there were 6 moms, 1 dad, and one sibling), had one leg crossed over the other and as she talked she would rock it back and forth and back and forth. When something stressful was being discussed, the mom would begin to move her foot in circles (what my mom has always called “the cat paw”). Now if the individuals doing this were all autistic, we would say, “Oh, they’re stimming.” Some would step in and tell them to relax and calm the movement (I’m totally against this, but have seen it happen far to many times to count). Others would just brush it off as something autistics did. But what about when it is NT parents doing it? What do we call it then?

While I was pondering this, I was thinking back to an incident on spring break when I was hanging out with an NT friend from back home. We were sitting over a game of Magic the Gathering, with How I Met Your Mother playing in the background. He began to recite lines from a different show as we watched, and I couldn’t immediately place the origin of the lines. “What are you scripting?” I inqired, a line I had used so many times with Landon. And then I paused. Scripting is an autistic word; we use it to describe when autistics replace original speech with lines they have previously heard. But what do we call it when NT’s do the same thing?

I’m really just thinking aloud here, but if anyone has any thoughts/insight, please share.

Autistic or Spoiled? Can’t she be both?

I try my best to be as professional and courteous as possible at work. One woman in particular, however, makes this very difficult. This woman has a daughter who is probably no older than 4. The daughter, who I’ll call Mandy, apparently has autism.

Here’s a typical exchange between me and Mandy’s mom:

• Miss, you’ll have to tell your daughter to stop climbing the bookshelves.
• Oh, no, Mandy is autistic. (Polite smile.)
• Be that as it may, she still has to stop climbing atop the bookshelves.
• Oh, you musn’t get it. She has autism (pronounced very slowly and carefully).
• Ma’am regardless of her neurological condition, she is not allowed to climb on the bookshelves. It is a safety hazard for both her and the other patrons walking by. You will have to remove her from the bookshelf, or the librarian will ask you to leave the premises.

Or this one. Mandy walks over to the stack of stickers and takes a handful.

• Hun, you’re only allowed one sticker.
• Oh, it’s alright, Mandy has autism.
• Oh. Mandy. (Pause) One sticker. Mandy. Just one. Here, give me the rest. Good job Mandy!
• I can’t believe you would treat my daughter like that. Do you not understand she has autism?

Now it may be true that Mandy has autism (though she doesn’t exhibit any of the usual traits). But her mother is creating this notion that because she is autistic, she should be able to do a she pleases with no restraints. This serves no one any good. Mandy will grow up believeing she’s excused from all the rules because she is autistic, and people who meet the mom will come to think autism and spoiled brat are synonymous, because the mom uses the autism as an excuse for downright bratty behavior.

What do you think about the situation? Is there a different way I should handle things?

The Autism Carnival

 

As I mentioned in this “How to raise autism awareness” post, the local autistic teens and their college mentors sponsored a carnival for all the spectrum kids in the area and their families. I accompanied the triplets to the fair and it was absolutely fantastic. There were games and prizes and food, just like at any normal carnival. But unlike most carnivals, there was also a quiet zone, a sensory area, and a hideout, for kids who might need a break. Plus the whole event was free to visitors. Here are some of the great shots from this afternoon. (Since I do not wish to compromise anyone’s privacy, I had to remove all photographs with people in them).

Reads: A Carnival is All about Having Fun!

Can you tell an autistic made this?

 

And once you let an NT walk by...

Lawrence was in heaven. Who needs games when they have balloons?

A great time was had by all.