Facial recognition

Here and there I have read adults on the autism spectrum talk about the difficulty they have recognizing faces. Even if it’s a good friend or a frequently-seen person, there are times they simply can’t recognize a person’s face. Maybe it happens all the time, I’m not sure. I think I read from one person they rely on other features such as hair or height or, perhaps, glasses to trigger that recognition.

I have also read of parents speculating that their child has a type of face blindness. This isn’t anything I’ve ever seen in Charlotte. That doesn’t mean it isn’t at times a challenge for her, but it is not something that I ever witnessed myself.

Until…

This morning Charlotte was very upset about going to school. She claimed she didn’t feel well but when pressed for specific symptoms, she came up short. She started telling me she didn’t think that N wanted to be her best friend anymore. When I probed about that she said N didn’t say anything about not being friends anymore to Charlotte, but that she didn’t sit by her on the carpet during one particular time in class. I continued to probe.

Eventually she shared that when N came to school her hair was cut very different. “And I didn’t even recognize her! She came and sat by me and I didn’t know who it was. Then she talked and I knew it was N. But her hair was really different, and I think it should go back to the old way!”

Wow. It really stunned me that she didn’t recognize her friend because she had a different hair cut. Via email her teacher confirmed that N’s hair was cut in a very different style.

I don’t see this as a hugely debilitating issue for Charlotte. If it were, I think I might have picked up on it sometime in the last 3-4 years. What I do see it as is further evidence that her mind does work in a way that is much different than mine. Sometimes I forget that. She has her challenges, but for the most part Charlotte does so very well, it’s easy to forget that she has an IEP for a reason.

***

Speaking of challenges, things are about to get challenging here at home in the kitchen. Over the last couple of years it has become very clear that Charlotte’s behavior problems are caused by food. The problem behavior is always the same (aggression, which can include hitting and other things, and screaming) and it’s always brought on by a food that Charlotte has eaten a lot of over several days in a row. Recently both mandarin oranges and lemonade were the culprit. I started seeing it go that direction with popcorn recently but I nipped that by stopping the popcorn before things got out of hand. It’s fine to eat popcorn and those other foods … just not every day.

I began to wonder if gluten was the underlying problem with these other foods. The number of foods she has to limit keeps increasing, and the fact that foods affect her behavior is, to me, very unusual. So I ordered a stool test and gene test. The stool test, which looked for IGA antibodies to gluten, came back positive. The gene test identified two nearly identical genes for gluten sensitivity, indicating she got one from each parent.

This weekend is our last big hurrah with gluten before we all go gluten free come Monday. For Charlotte, it will mean gluten free for life. At some point, I’ll have the other two kids tested as well. The whole family is going to go gluten free because it will just be easier if we all eat the same things.

Truth be told, I’m dreading gluten free living. It’s a hassle. I know once we get in the groove, it will become second nature. Hopefully it will be worth it in the long run.

If you’re reading, leave me a comment. I miss interacting with my blogging friends!

 

Unexpected conversation: autism

In yesterday’s post I complained that it’s challenging to have a decent conversation with Charlotte.

So, of course, she sets out today to prove otherwise.

First, some background: I have not ever told Charlotte she has autism. My reasoning is that Charlotte doesn’t see herself as different from other kids (that I can tell). I feel it would be somewhat cruel to start a conversation with her about autism and differences when she thinks of herself as just another kid (and, pretty much, she is). I’m not hiding it from her, but I have always thought it would be a child-led discussion for us. When she asks questions, I’ll answer.

I also thought that conversation wasn’t happening anytime soon.

I mentioned a few posts ago that we are considering working with a behavioral therapist to get a handle on some challenging behavior. The beginning of this process is that we are keeping a detailed behavior log for two weeks. I have a few sheets of the log on a clipboard which I have left laying on the countertop in the kitchen.

Twice I have found Charlotte reading it. Across the top it says “Client: ______________” and I wrote in her name. The rest of the sheet is a blank ABC grid (antecedent, behavior, consequence) which I’m using to record the challenging behaviors. In the top left corner is a teeny tiny logo that says Center for Autism, and at the bottom, in a small font (barely legible as I need more ink for my printer) is the web address of the Center for Autism.

Today I was sitting on the couch with my iPhone browsing my Twitter feed. Charlotte came and sat next to me right as a clicked a link to read the latest post at The Thinking Person’s Guide to Autism.

This is the conversation that followed.

Charlotte: Why am I a client?

Me: {I knew immediately what she meant.} Wellll, you’re not really a client exactly. Actually, I’m just keeping track of some stuff at home so I can help you with some of your tough behaviors. You know, the pinching.

C: Is austem {her pronunciation} going to help me?

Me: You mean autism? No, autism is not really what’s going to help us. It’s something different.

(OMG she picked out the word autism from that teeny logo on the behavior log! I’m suspecting she saw the word and recognized it as something she’s heard around the house before.)

C: Am I going to go to autism and they’ll help me with my behavior?

Me: No, you won’t go anywhere. I’m just keeping track of your behavior so I can see if I can help you when you get frustrated. At home. Autism isn’t something you go to.

C: What is autism?

Me: Ummmmmm, hmmmmm, welllllllllll {world-class stalling tactics} autism is a way that some brains operate. Some people’s brains operate with autism, and some people’s don’t. Some people have a little bit of autism, and some people have a lot.

Sarah: Do I have austem?

Me: Sarah, you probably do have a little bit. Everyone has a little bit and some people have a medium amount and some people have a lot.

(Aside: I really believe this. I believe all the traits on the spectrum are human traits that all people have in varying degrees of severity.)

Me (continuing): Charlotte has a medium amount. And I probably have a little less and Daddy has a little bit too. And I know other people that have a medium amount or even more.

Then Charlotte stands up and falls to the ground laughing and rolling around while saying, “I have autism in my brain!” And cracking up hysterically.

And there you have it.

Our first foray into The Autism Discussion.

I’ve been wondering most of today if I should say anything to her about it, or ask her anything.Or perhaps I’ll wait for her to bring it up again.

 

Playing detective

I thought the days of playing detective to figure out what my language-impaired child wanted or needed were long gone.

As she’s gotten older, Charlotte’s communication skills have improved tremendously. She can be very specific about what she wants and doesn’t want. She generally makes her likes and dislikes known.

Or so I thought. Perhaps I’ve grown complacent because, compared to younger Charlotte, her language is awesome. But the reality seems to be that her language skills still aren’t on the level of what I imagine a neurotypical 7 year olds to be. It’s causing some frustration.

Rather than tell me that she doesn’t like the particular bread I served, she says, “I don’t like bread.” Or, rather than say, “I can’t eat this pasta because there are also lentils on the plate,” she just leaves the table. Sarah, on the other hand, looks at the plate horrified and declares, “I do not like lentils. Get them off my plate.” Big difference.

I’m left feeling frustrated. Those two examples are what have finally clued me in that she’s not expressing herself well. When she said, “I don’t like bread!” and bolted from the table, I managed to get her to talk to me about it (a real conversation is usually such a struggle) and she eventually said, “I like the other bread, not this new bread.” I had recently changed breads because I was tired of the other one.

The lentils example was just tonight. She ate her carrot and pears and then bolted from the table. No amount of encouraging could get her to come back in. I’m trying to get the girls to try new foods so I put lentils on their plates. They don’t have to eat it, it’s just there for them to try, no pressure. Eventually, of course, I gave up. While I was out running an errand, my husband texted me that she ate most of her pasta, that the lentils on the plate were the problem.

I’m connecting the dots. It’s not that she didn’t like or want the pasta, it’s that she didn’t want the lentils there. It’s not that she no longer likes bread, she just didn’t like the new bread.

So much of our communication lately seems to be me saying, “Charlotte, listen to me.” Or “Charlotte, I need you to respond.” She’s off doing whatever she wants to do, heedless of my requests/demands/shouts. She seems frustrated with me too. “Stop interrupting me!” is frequently heard, along with “you’re making me miss out on all the fun!” And “you’re messing up my plan!”

So many of our disagreements seem to center around the misalignment of our plans. I work very hard to engage her upfront with the plan for the day or just the next several hours. Sometimes she goes along with it, and other times she says “okay” but then she fights me on everything. Sometimes it’s because she has her own plan, which she has failed to communicate. Or it’s that she really didn’t want to do my plan, but didn’t just come right out and tell me.

I feel like there is something missing here. She and I are lacking the tools we need to get on the same page. I know she enjoys structure to her day, and she needs to know what the day entails. However, we are past the days of a visual schedule to let her know what we’ll be doing. She has her own very opinionated mind. Me writing up a plan is only effective if she buys into it. I don’t know how to get a sincere buy-in from her if she’s unable to tell me that she doesn’t like a part of the plan. If she’s unable to communicate to me that she’d rather stay home in the morning and play with toys rather than go to the playground or to the store. Or that she’d like to watch a show, then color, vs. the other way around.

I don’t want to be a mama dictator. I am completely willing to make a plan that makes everyone happy. I can’t do that, however, if Charlotte doesn’t have the communication abilities to better express herself.

 

Autism in girls (Shazam!)

The “Shazam!” is courtesy of Charlotte. They played a game called Shazam at Drama Acting Camp and the word has been stuck in my head ever since.

And it kind of fits this post anyway.

Somehow (via Twitter I think) I was pointed to this very interesting article about autism in girls. A recent published study shows that Asperger’s looks slightly different in girls than in boys.

This is something I already believe to be true – but only because I’ve heard it said a million times.

What exactly is different, I have wondered. The one thing I’ve consistently heard is that girls are better at imitating socially appropriate behavior, which may be why they are not as easily identified as boys. Girls want to fit in, “they” say.

I have questioned, right here on this blog, just how much the ASD label fits Charlotte. I see pieces of it here and there, but mostly just a touch. It has never felt like autism fit her like a glove.

The gist of the study is that the questions on the ADOS and the ADI-R (the gold standard diagnostic tests for autism) are better suited to identify boys than girls. There are many more boys than girls with autism, and the ADOS (and other tests) were modeled on the earliest groups of children with autism – mostly boys.

I’m not going to go into all the details of the study because, frankly, that’s not my cuppa. I do want to hit some highlights from the article.

These things, when I read them, well, “Shazam!” I thought. This explains a LOT.

For example,

For example, the Swedish study found that parents of a girl are more likely to report that their daughter “interacts mostly with younger children” than are parents of boys. Parents of boys are more likely to report that their son “lacks best friends” or “is viewed as a little professor” by peers.

Check!

Also

Unlike the stereotype of the boys with autism, girls with the disorder are often interested in imaginative play — obsessively so, in some cases. “You don’t expect to see a kid with autism being obsessed with a baby doll,” says Bishop.

Check! (Remember the recent departure of Daphne?)

Oh, and this

Girls in the study also “avoid demands” at a significantly higher level than boys. Other studies have reported that people with autism avoid everyday demands made by other people because they feel anxious when not in control. Girls may be more likely to avoid demands passively, by ignoring them, rather than acting out like boys.

Check times a thousand!

Wow -some things are making sense. Yes, her imaginative play is great, but she can be so controlling about it. And gets so upset if she doesn’t have a certain amount of time to do it every day.

Yes, she has a couple of same age friends, but she does indeed interact better with younger children.

But the big a-ha – “avoids demands.” Oh yes! I’ve fallen into the trap too often of thinking it’s because of my terrible horrible no good very bad parenting that she doesn’t do what I ask her to do. If only I was firmer (or something) we’d not have these issues. But no – it truly is an autism thing.

And it’s about anxiety? Could it be? I would never have thought that.

As you can see, the article about the study was a real eye-opener for me. In a good way. It’s so much easier for me to handle things when I can mentally think to myself, “It’s the autism, it’s not because I’m a bad parent, or she’s a bad kid.”

The question becomes: How does this help me? How do I get her to stop avoiding demands?

Oh how I wish I had the magic answers! Don’t we all?

 

Visions of triumph

Acceptance seems to come in stages over here. When she was a toddler, I accepted that Charlotte was developmentally delayed. That acceptance led to an eventual acceptance of autism. It wasn’t easy breezy, and I wallowed in and out of denial and fear, but acceptance is where I finally landed.

When it comes to accepting my daughter for who she is – incredible, frustrating and everything in between – I am a super star. I think just about everything about that kid is great. I love her to pieces.

Yet at times I struggle.

It started last summer with the swim team. I had this vision in my head that Charlotte would conquer swimming and by the end of the summer she’d be doing laps up and down, back and forth. Freestyle, backstroke, the whole nine yards. We’d all be so proud! Thrilled because she started out barely able to make it halfway across the pool but finished up a champion.

That didn’t really work out. She never overcame her fear of the deep end. Swimming the entire length of the pool without assistance never materialized.

This summer she started a trampoline class. I picked it because Charlotte is not the most coordinated of children and she has weak core strength. She can barely pedal a bike. What swimming skills she had, she lost. And as she has no interest in sports, maybe trampoline would cultivate a strong interest in fitness.

The trampoline class touts benefits such as helping the vestibular system, optical tracking and peripheral vision, fear management, concentration and attention to detail and more. Plus, it’s fun! An hour and 5 minutes of jumping and crashing – what’s not to love?

When the classes began (she goes 2x a week), I started with the visions again. I imagined that as the summer progressed she’d go from being a child who could barely keep her balance to one that showed a natural affinity for trampoline. Her body would strengthen and she would gain confidence in her physical abilities. She’d finally be able to ride that bike and swim laps at the pool. A triumph!

As the weeks have gone on, reality is beginning to settle in. Quicker this time than last summer. I watch the other kids and some seem to be mastering the skills so much faster than Charlotte. I see her progressing, yes, but the progress is slow. That natural affinity? Not there.

It’s a pattern I fall into all too frequently. I thought a couple of years of speech therapy and special needs preschool and she’d sail into kindergarten sans IEP. All caught up and look how far she came!

In Kindergarten she acclimated so well that I began imagining her giving a speech at high school graduation describing her ascension from special needs preschool to the top of the academic heap. (It’s true, what can I say, I have an active imagination.)

It feels like I’ve spent a fair amount of time the last four years imagining scenarios where my daughter triumphs over her autism. Where we kick the autism to the curb and never look back. My vision of that triumph is based, I suppose, on magazine-printed ‘against all odds’ stories I’ve wasted too many hours devouring in waiting rooms and checkout lines.

Is this to say that I’ve now come to a place where I don’t think Charlotte will triumph? That I think that the autism is it and all there is?

Not quite. But I do need to let go of the grandiose visions. The scenarios where she climbs victoriously to the top of the mountain and plants her neurotypical flag.

And perhaps it’s time to focus on the triumphal moments. The pieces of our days and weeks and years that make up the stepping stones of that mountain (where she can plant any damn flag she wants).

Last week Charlotte and Sarah attend Vacation Bible School at church. The first two days there was an extra volunteer who hung with Charlotte in her crew as she was, in her words, “a little bit afraid” to go with the group. The remaining days she was with her crew, sans the extra adult.

This week she began drama camp (“it’s acting camp, mom”). First day, as the instructor is gathering the kids together, she says to me, “I’m a little bit nervous to go.”

“I think a lot of the kids are nervous, Charlotte. It’s OK to be nervous.”

She says, “I’m going to go tell the teacher.” And before I can say anything she heads past the lined-up fellow campers and straight up to the teacher. She taps her on the shoulder and says, “I might be a little scared to go.”

The teacher says, “Oh! Well, do you want to walk down with me?” and she offers Charlotte her hand. Charlotte nods and off they go.

Triumph. (And an auspicious beginning of self-advocacy.)

 

Playtime

I spend a lot of time, way too much time in fact, still questioning how much Charlotte fits the ASD diagnosis. I have no explanation for why I do this, I just do. I’m sure it’s not the healthiest thing to engage in, but there you have it.

Sometimes I even flip over to the DSM IV criteria to see if any of it still applies to her. I’m crazy, what can I say.

Yesterday my husband was outside mowing our swamp yard. Sarah threw some clothes and shoes on and headed out to join him. From the kitchen window I watched while doing dishes. First she used a bucket to scoop out bucketfuls of water from the sandbox. Then she followed alongside her dad, holding on to his t-shirt, while he mowed. She went on to gather up dandelions and try to blow them away. She practiced her mad balancing skills on the bricks framing our patio. She swung. She kicked dirt and grass around. She found a worm. She had fun.

Then it hit me.

I have never seen Charlotte do anything like that. She cannot entertain herself outside by herself. Just play with whatever strikes her. When she goes outside it’s always the sandbox and top of the playset that she wants. Or chalk on the driveway. And she usually wants to take some of her characters -same play script, different location.

But to just go outside, with no specific activity to do, does not happen.

Don’t get me wrong – Charlotte loves to play. In fact, it’s an extremely important part of her day. She *must* have her playtime. And, by God, do not interrupt her playtime.

In a flash, I saw the subtle difference between the way Sarah, my non-autistic child plays, and Charlotte. The way one can do something novel while the other prefers the familiar.

lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

Charlotte has the make-believe part down. It’s the varied and spontaneous part where she’s not as adept as Sarah.

That’s okay though. This isn’t something I’m shedding any tears over. There are quite a few things Charlotte is adept at that Sarah may never be. And that’s okay, too.

My realization did, however, underscore the importance of exposing Charlotte to new experiences. She needs new things from which to draw new scripts for her play. It’s why I’m glad she’s going to a week of Farm Camp this summer (among several other camps).

You may think this strange, but it’s oddly relieving me to find ways that she fits the autism diagnosis. Most of the challenges we have with Charlotte are behavior-related, and most are at home. Her language is pretty good and she does very well at school. People often find it hard to believe she has autism.

This in turn makes me question it too. And I start to wonder if the challenging behavior is just because she’s a bad butt (as her sister delightfully puts it), or because we haven’t disciplined her enough. (Why is that we so often run straight to blaming ourselves?)

It’s an exhausting train of thought – the is she / isn’t she merry-go-round of Charlotte’s autism.

That’s why recognizing how different her playtime is than Sarah’s is oddly relieving. There IS an explanation for the exceptional challenges we have. A reason why.

I’m not meaning that Charlotte’s lack of spontaneous and varied pretend play is the reason for the various challenges we have. Rather that it’s all tied together. The language, the play, the social, the behavior.

The autism’s in all that. Maybe not every minute of every day, but it’s there. Sometimes I just need to be reminded.

 

Sobering

Today was a pretty significant day in the life of one Miss Charlotte.

She went on her first play date at a friend’s house … without Mom.

Also of significance is that this play date was not arranged by Mom either. I had not a thing to do with it. Nada. Zip. Zilch. She was invited by her best friend.

That’s right. I said best friend. That Charlotte has a best friend in first grade has been just about the most awesome thing ever.

And completely unexpected. In the early days of our autism journey, I read how children with autism are loners, they don’t have friends. School is so isolating for them.

While I don’t doubt that is true for some children (with and without autism), it’s certainly not a blanket statement that should be used to describe the entire autistic population. Actually there shouldn’t be any blanket “always” or “never” statements about autism ever made, but that’s a post for another day.

But because of the struggles I’ve read that some children have with friends, I naturally worried that Charlotte might not make any friends.

I’m so happy that she has this good friend. What I’m pretty sad about (and they are too) is that her friend will go on to a different school next year. (Our district has Early Childhood Schools for K-1 and Elementary Schools for 2-6. Each ECS feeds into two Elementary buildings.)

So what was sobering about the day?

That came later. I picked Charlotte up late afternoon and after awhile we decided to take everyone to Chipotle for dinner (I completely fell out of my meal planning and preparation routine since we went on a 3-day vacation last week).

Sarah and I stood in line while my husband and Charlotte (and a sleeping Nolan) waited at a table. It was a fairly long line.

At one point I glanced toward the table and was taken aback. My husband was having to physically block Charlotte from trying to wake up Nolan. This is one of her favorite things to do and it’s impossible to sway her. I can’t tell you how many times his morning sleep has been cut short by her determination to have “Nolan time.”

There I stood, watching as an outsider might, a 6-going-on-7 year old girl repeatedly ignore the kind but firm requests of her father to leave the baby alone. The more he blocked her, the harder she tried to shove past him. She kept telling him to “Move!” and “Get out of my way!” but he held firm.

This went on for what seemed like an eternity. I periodically glanced around the restaurant to see if anyone else was watching. No one was. (Fortunately Chipotle is always pretty loud so you really couldn’t hear her loud voice.)

Finally he was able to distract her with what looked like a game of “one potato two potato.” They were bumping fists all over the place and she was practically falling on the floor laughing.

Meltdown averted.

But I had to wonder. Was this autism at work? Or sensory issues? Or could this have been any 6 year old? I don’t think so on that. I think most kids her age would understand that we should let a sleeping baby do just that: sleep! Or they would have given up trying once Mom or Dad made it clear to let the baby sleep!!!

It’s not like this was a random occurrence. She often tries to wake him (and often succeeds). This behavior is at the top of the most frustrating list.

I have to believe it’s the autism that fuels her determination to do what she wants to do despite … despite everything.

Watching from a distance, as an outsider, my kid act so nearly out of control, and then seeing my husband reign her in before meltdown ensued – it was sobering. Sometimes we do have it tough, I thought to myself.

Then I remembered that my kid with autism had a play date at her best friend’s house.

And sometimes things aren’t so tough after all, I thought to myself.

Thus swings the autism pendulum.

 

Observations

If I had more time, and a better handle on them, I’d craft a tidy little blog post about the following:

In a blinding-flash-of-the-obvious moment recently, I detected a pattern in some of Charlotte’s more odd-looking behaviors. E.g., sitting on her bum and sliding down the hall rather than walking; walking up the steps on her knees and letting her whole body bang on each step; laying on the couch with her whole body smooshed into the cushions.

Could she be seeking proprioceptive input to her whole body? I’m so out of touch with sensory-related OT stuff now that I’m not sure I’m even wording that right. But I think trying to give her some heavy work and other proprioceptive shtuff might be good for her. Yesterday I made a “Charlotte sandwich” before school.

And I can let go of my irritation when she’s sliding down the hall on her whole belly – maybe it makes her feel good. Maybe it does something for her.

I’d also write about:

Watching Sarah as she has assimilated breezily into preschool has given me so much more empathy for Charlotte. I was finding myself getting frustrated at things like Charlotte not being willing to walk into the school by herself. Blaming myself because I didn’t “nip that in the bud” when it started (as has been suggested more than a few times by others).

Witnessing Sarah walk easily and without hesitation into the school with another Mom so I don’t have to carry Nolan in too helps me remember that some things are just harder for Charlotte. And that’s okay. Nothing is gained by forcing her to “conquer” her “fear” of [what I'm not sure].

I could easily write a cute blog post about:

Charlotte is an awesome big sister to Nolan. She just “gets it” when it comes to interacting with him. Not too much, not too in-your-face. She likes to assist with everything and is actually truly helpful. She put the diaper cream on his bum this morning, for goodness sake. Can’t beat that!

Nolan’s cooing sounds like he’s saying, “ehhh” (soft /e/ sound). When Charlotte hears that she’ll say, “Nolan, what sound does an E make?” and then “Good job, little man!”

I could also write a not-as-cute post about:

Sarah is a little too “loving” when it comes to Nolan. She is in his face constantly. Constantly. She wants to touch, kiss, cuddle, tickle all the time. All. The. Time. It takes every ounce of patience I  have to refrain from telling her to leave him alone all the time. She pokes, pulls, twists and then says, “I’m just looking at him.”

But here’s the kicker: Nolan loves it. His face lights up with a big smile when she wraps her arms around his head and hovers 2 centimeters from his nose.

So maybe I’m the one with issue, eh? I couldn’t stand to have someone in my face like that all the time.

But, alas, I don’t have time to craft the tidy little story that each one of these deserves. So I just leave you with the above nuggets – a little glimpse of how life is these days.

 

 

 

Complicated

Last week I had lunch with Charlotte at school. I thought it would be a special thing I could do with her – especially given that I’m not volunteering in her class this year. What with having a newborn, it’s just tough to carve out the time and babysitting (I’m not taking him with me into the cess pool of germs that is an elementary school).

Charlotte and I sat with 4 other girls: another IEP girl who was in her K class and 3 new friends. These are the girls she eats with most often.

Charlotte didn’t really engage much with the girls. I wouldn’t say she was in her own world, she was just focused on eating her lunch. When she did talk to them she was about 3 paces behind in the conversation, she talked so softly she couldn’t be heard, and she didn’t look at them so the girls had NO idea she was talking to them. And when they attempted to include her in the conversation, she didn’t answer (we were talking about Halloween costumes).

After lunch I stopped by to talk to the special ed teacher about the possibility of a social skills group. I described how she was so passive, and made no eye contact, and I wondered how will she ever make friends if she doesn’t communicate effectively.

She readily agreed to the idea and by day’s end I had an email from Charlotte’s speech therapist about creating a group to work on social skills which would include typically developing girls to serve as role models.

***

Links to an interview with Ari Ne’eman have been tweeted and Facebooked lately and, finally, this evening I got around to reading it.

If you aren’t aware, Ari Ne’eman is a young adult man with Asperger’s who founded the Autistic Self Advocacy Network and was recently appointed by President Obama to the National Council on Disability. He is the first Autistic Presidential appointee.

I’ve read other interviews with Ari Ne’man and always find myself nodding along in agreement with his point of view. Makes sense to me.

His interview in Wired is excellent, and once again, I nod along.

And then I get to this section near the very end of the piece.

As a society, our approach to autism is still primarily “How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?” The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.

And I wonder: am I trying to make my non-autistic self more comfortable with my autistic daughter? Am I hoping to train her into acting more normal in hopes that she’ll pass for normal at some point?

Charlotte seems oblivious to the fact that she wasn’t on the same page as the girls. Right now the kids are all still getting to know one another, but at some point, I predict, they’ll realize that she’s different and they’ll quit trying to be her friend.

Will she realize that? If she does, will she care?

Should I be trying to teach her better communication skills so she can have friends? Or is that sending a message that she should try to be something that she’s inherently not in order to fit in?

Charlotte wants play-dates with friends. I could teach her about eye contact and listening and frame it up as ‘being a good friend.’

It’s complicated.

Frankly, I don’t have the answer.

http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/all/1

 

Debunca

A few weeks ago, Charlotte and I were laying in her bed telling stories. As we quieted down I heard her softly singing, “Debunca, debunca, debunca,” playing around with various melodies.

I asked her what debunca means and she said, “That’s what I do with my mouth.”

She was referring to the tic she does with her mouth. And she’s right,  it does indeed sound like she’s saying, whispering really, the word “debunca.” Whisper that over and over again and you’ll have a pretty good idea of what kind of motor tic she has.

Lately, as in the last few days, she’s been debunca-ing quite a bit. Yesterday we had an interesting conversation about it. I generally don’t ever bring attention to it, but she wasn’t interested in eating dinner and so I asked if she was feeling OK, if her tummy hurt or maybe her mouth was sore (she was really doing the debunca a LOT which was why I asked).

She said no. Then she said, “I was really excited when we had the reading and writing celebration at school, that’s why I started doing it.”

“Oh,” I said, “is that when the debunca started?”

“No, it started at home. I was really excited when we had the kindergarten concert, that’s why I did the debunca then.”

“Do you always do debuncas when you’re excited?”

No answer to that.

Then she started taking deep breaths through her nose and exhaling through her mouth. She said, “That’s what I do to make them stop. I just breathe a lot.”

“Oh, are you able to make them stop any time you want?”

“I can drink water, too, that will make them stop.”

“Does it bother you when you debunca?”

“No, it doesn’t. When I eat hard food, that makes them start.”

“Hard food like what?”

“Like apple slices. They make me do the debuncas.”

[I'm not sure any of that is true, by the way.]

From there the conversation kind of petered out. It’s apparent that Charlotte is very aware that she does them. It doesn’t seem to bother her and I don’t think she feels self-conscious about it. At least I hope she doesn’t.

There are times where it seems like she’s trying to talk and just can’t get the words out because of the debuncas, but that is seldom.

The conversation about her doing it when she’s excited has happened before. She’s also told me that she does it because she likes to.

I’ve grown much more accepting of this. It used to scare me into sleepless nights of worry worry worry. So terrified was I that she might have Tourette’s and even more social difficulty because of that.

But as my husband wisely says, “Not much we can do if she does.”

He’s right. May as well move to a place of acceptance now, whether it’s just transient tics or something she deals with for many years.

*******

In other news, it’s been about 4 weeks of zero restrictions on Charlotte’s diet. We have seen multiple rashes and she is bloated very often. We think it’s dairy. I think Charlotte thinks it’s dairy, too, because she has started limiting her consumption on her own. No pizza, no grilled cheese sandwiches, no quesadillas. She still likes ice cream but we don’t keep it at home so it’s only occasionally when out that we’ll get a cone. Inevitably she will get a light rash and itch like crazy for a day or two.

In terms of behavior, I’ve seen a little bit more acting out and screaming at us but nothing dramatic and I can’t say for sure that it’s tied to something she’s eaten. Could just be phases or testing boundaries. Who the heck knows.

The great news is that there is nothing life threatening going on here and it’s still incredibly liberating to be able to eat whatever we want whenever and wherever.