Friday, September 10, 2010

Parenting a Child with Aspergers - My Experience

First, I want to say that I am not writing this post to garner more sympathy, but more to share with others some strategies for and perspectives about Aspergers with the hope of increasing understanding.

Some of my loyal readers may not know this, but my son has been diagnosed with Aspergers's Syndrome. He is "high-functioning", as they say. He is able to function fairly well in normal society and only has a few outward quirks, like not directly meeting a stranger's gaze and sometimes flapping his arms.

From what I understand, Aspies (as they are sometimes called, they may even call themselves this), have brains that are wired differently than ours. There are not a lot of cross-brain connections (i.e., left to right) as there are in "normal" (BTW, I am really beginning to hate that term "normal", because who gets to decide what that is?) brains. Instead, there are more than the normal number of local connections between neurons. This explains, in part, why Aspies and autistic people have a lot of sensory sensitivity, instead of firing just a few neurons, a stimulated neuron might fire hundreds of them. Some people who are "on the spectrum" (this term emphasizes that not all autistics or Aspies are a like or manifest the same symptoms - there is a range of effects) can actually see the blinking of fluorescent lights; others are very sensitive to sound or touch. Eddie is sensitive to sound (and he may even have perfect pitch) and when he was younger, was sensitive to touch. He didn't like a washcloth on his feet, for instance, or q-tips in his ear. Until Eddie gets used to your facial mannerisms, it is too distracting for him to look you in the eye - your eye and facial movements are too random and unpredictable. He is used to me, so he always looks me in the eye. That is why they might like to watch the same video over and over again (I used to watch a lot of Elmo with him!) and also why playing or working on the computer is preferred -the computer is predictable especially since they can control it's movements.

In addition, most people on the autism spectrum have to work very hard at social interaction - the rules for what to do when they talk to someone that are usually very easy for the "normal" ("neurotypical" is a better term) person are rules that they need to learn explicitly. The neurotypical pick up these rules more or less unconsciously; they often do not think about them. The neurotypical grows up and learns by observing and imitating. But people on the spectrum have to learn these interactions explicitly and they have to consciously remember all the myriad rules that go with each interaction. So, my son knows what the rules are for interacting with me, but the rules are different for his teachers and even each teacher is different, so he has to relearn them consciously every year.

Autism and Aspergers Syndrome were terms coined at the same time, by two different psychiatrists in the 1940s. One was working in the States and the other in Europe (I think). The one who coined Aspergers mentioned that these individuals also tend to be "clumsy". I think this has to do with how their brains are wired. It affects both their muscle tone but also their eye-hand coordination. Eddie has below normal motor skills and especially fine motor skills. (This is complicated by the fact that Eddie has also been diagnosed with Marfans Syndrome, but that is a subject for another post. For my purposes, suffice it to say that his muscles and ligaments are too stretched, not elastic, so his muscles will never be strong.) Eddie doesn't like art or handwriting or doing things that require precise movements of his fingers.

People on the spectrum also do not like changes in routine. It gives them a lot of anxiety because they don't know what will happen. It is not predictable because it is unknown. It also means learning a whole new set of rules. Once they do, their anxiety lessens. When he was younger, I used "social stories" and PECS (pictures that show daily activities) to help him learn routines and to transition to new ones. Now I can do it verbally. It helps him lessen his anxiety.

I guess I am writing this because Eddie just started school this week. His first two days were fine, but today, his anxiety got the better of him. He was afraid there would be a fire drill and he thought he forgot his book, so he thought that he was breaking a rule and would get into trouble. He complained of a headache after lunch but he couldn't really articulate why he got it or what was causing his anxiety. It is hard for him to connect his feelings to words and he gets flustered when I ask too many questions. I need to learn more about this, though, in order to understand it better. Today, Eddie wanted to come home, but when I gave him the option of doing his homework in my office while I worked, he decided to stay in school. Fortunately, it was time for afternoon recess by then, so he went out to the swing (spinning and swinging are what they call self-stimulating behaviors; it seems to calm them when they are over-stimulated. It is like the local connections are too much for them; when their vestibular systems are stimulated through swinging or spinning, I think it calms those local connections down.) after recess, he seemed calmer.

At any rate, there was a time when I took him to occupational and therapy sessions -quite a bit through first and second grade. But it was hard work for both Eddie and me because I had to keep him on track. I came to realize that Eddie works so hard at school, trying to remember all the rules for social interaction, that therapy was like the straw that broke the camel's back. I also suffered from adrenal fatigue (caused by using a memory foam mattress) and then was diagnosed with cancer again, so I haven't pushed it for over two and a half years. So when he is home, I let Eddie have unstructured time, so he can relax and not have to remember all the rules.

I also do not try to have him behave in "normal" ways. I let him be a "weirdo". By this, I mean me and my family accept him as he is, letting him flap his arms, accept if he spills water, play on the computer or his wii and not dictate to him how to act. I think Eddie is comfortable at my house because he understands that he is not like his classmates. My family (my folks and younger brother live with me) is outside the norm. My mom is full Inupiaq Eskimo; my dad/parent is transgendered; and my brother may also be on the autism spectrum. Then, his mom (me) is also Inupiaq Eskimo and I have breast cancer with lots of medical appointments. We also like to be silly;we tease Eddie and make funny rhymes, use funny voices, etc., so he is comfortable being who he is at our house. We are weird and proud of it! We accept the diversity of our experiences and don't try to have Eddie fit into somebody else's idea of "normal". And we let him relax. He seems happier for it.

I also try to use Eddie's interests to encourage him in certain activities. At the moment, Eddie loves the TV show, Wipeout. So we built him a mini-obstacle course in the backyard and he spent more time outside in the backyard exercising in order to beat his own score.

Anyway, there is probably more, but for now, I just wanted to try to explain more about autism. Since Eddie has been anxious about school today, I am letting him relax and not micro-manage his life at home I am in close conversation with his teachers at his school about how we can decrease his anxiety, like maybe less assignments using handwriting or art or other fine motor skills, easing him into the new rules for school, or maybe allow him to go outside and swing for a few minutes to calm down. We will see how it goes.


Joanna said...

Eddie is lucky to have you. I think he is happy with the freedom he gets at home to be himself. You are giving him a gift.

My background is that long ago, I was a speech therapist. I think your calmness, whether dealing with Aspergers or cancer is truly remarkable. If you are weird, it is certainly a good weird.

Kryn said...

I am so grateful for the team around my Asbergers son. Knowledge is so good. Thanks, Deanna for reminding me to trust my heart too! --Kryn

Carver said...

Great post Dee. You and Eddie are fortunate to have each other.

Dee said...

@Joanna, Kryn, and Carver, thank you! I appreciate your words of support, too.

@Joanna, wow, I didn't you realize you worked as a speech therapist, so you understand Eddie's social communication efforts.

@Kryn, you know your child better than anyone, so, yes, trust your heart!

@Carver, you will always be a role model for blogging and for doing heat you love!

Carolin said...

Indeed. In a world like this, it's hard to decide what's 'normal.' Everyone has their pesonal quirks that make them unique, and there's nothing wrong with that. You seem to be doing your best raising your child, so good job!

Carolin Newmeyer