Monthly Archives: April 2014

Flunking The Function

Executive function skills is a blanket terms for specific mental processes that help people reach their goals by organizing when things get done.

I don’t have consistent executive function skills.

That’s one of the biggest issues I have with my life. I’m still working on getting my life into order and unfortunately things don’t ever fit into a ‘normal’ schedule. I wish I had been able to do a blog entry a day for Autism Awareness month, but my life got in the way. Or mainly, I got in my own way.

Executive function skills can affect a person’s ability to

  • manage time or attention
  • switch their focus between tasks
  • plan and organize
  • remember details
  • As well as other important organizational skills.

With an added traumatic brain injury, things get even more complicated for me. Sometimes things don’t always make their way from my short-term memory to the long term memory. I also will end up in the middle of 4 different projects with nothing fully completed. My brain switches between different projects the same way it would switch between daytime soap operas. In fact, as I’ve been writing this I’ve been watching TV, talking to friends, checking out some fire props, picking up a work shift for tomorrow and starting on laundry.

My EF skills always fail when I have a mountain of things to accomplish with a real world disruption looming. If I just were to live in a cabin in the woods for a month I’d have books written and pretend to have more of my life in order. However, the world does not work like this so I am constantly trying to work on my EF skills.

I can’t do a blog every day YET, but some day soon I hope to do it.
Maybe some day soon.
For now, I’m going to try to get lots of work done before I start other random projects.

On a scale of 1 to 10

I don’t register pain like other people. What other people may describe as extreme pressure, such as having a lot of weight on me or wearing a tight corset, is actually very relaxing to me. The “rate your pain” scale does not make sense to me or some of my friends on the spectrum. There are a few reasons for this, but they are all important and can be dangerous.

Pain is normal for me. I’ve spent a majority of my life living with some type of pain. Difficulty breathing was an every day thing until we learned I had asthma. It’s weird to think of the dull throb of a strained muscle or twisted ankle as normal to some, but this is how I know my body. Like a house where the kitchen cabinets stick a bit, it’s what I expect from my body. It’s not until something really goes wrong and the doctors ask how long my symptoms have been around do things get complicated.

I don’t know what other people register pain as, so those pain scales require a little conversion on my part to make myself understandable. When I broke my arm, it took me 3 days to realize it was broken and only when it was completely swollen did my mother bring me to the hospital because “it didn’t really hurt.” I know I have a high pain tolerance, but sometimes it gets dangerous.

Pain scales require a certain amount of self-awareness even neurotypical adults don’t fully master. Since the pain scale never made much sense to me, and I grew up in a house filled with medical jargon, it has always been my practice to vividly describe the pain in ways doctors can understand. Pressure, throbbing, sharp, frequently, dull, sore are all words with tangible definitions. They require little conversion and it allows me to communicate clearer with my doctor. Only once did someone show me a scale with faces to represent the numerical pain. I laughed and said I had no idea what any of those faces could mean in relation to how I felt in my body.

So here I sit in the gym locker room as I recently discovered my hand grip has lessened significantly. This is directly related to the increase in knuckle cracking I’ve done recently. I’ve been having trouble holding things lately, but I thought it was just because I’ve been tired with school and work. Now that I’m aware there is a VERY big problem, I need to work on addressing this behavior. Hmmm… I wonder how I can do that?

Hint: Tomorrow we’ll be talking about ABA and CBT.

Learn with me

There are many different learning styles and not everyone learns information the same way. It would always bother me when my assignment in school was to write my spelling words twenty times each. This was a special type of torture for me because I can’t physically write for a long period of time. Taking notes during classes never worked for me either because I’d be too distracted to concentrate on what the instructor was saying.

I’m a visual and kinestic learner, so I learn from seeing and doing. When I’m leaning how to do something for the first time, it is easier for me to watch someone else do it first. This is part of why I’m really interested in acting or flow (object manipulation) because comprehension comes from actively doing the activity. If someone tells me information, I’ll either try to make it into a picture in my head or the information won’t stick.

Some of my friends can listen to entire lectures and ace a test without ever reading a textbook. They learn well listening to audiobooks, can react quicker to conversations, and work well listening to a lecture in a class. However, if they were to get only picture instructions of how to assemble a bookshelf they might get really confused as to how things work together.

A visual learner would be able to understand the diagram and know where the pieces go together. Reading how-to books, looking at class notes, or through pictures. In classrooms, they learn from powerpoint presentations, not just the person reading the presentation aloud.

Kinestetic learners are doers. They learn by physically experiencing an activity. We had amazing projects in biology where we’d build chemical compounds using little plastic pieces in different colors to represent the different parts of the structure. My friend taught her children fractions using lego pieces. If I had ever had the opportunity to learn fraction that way as a child, it may have made sense.

The path of special interests

I’ve mentioned special interests before, but they are worth another specific mention. Special interests can help provide the blueprints for the future by focusing on a specific passion. Not everyone goes to college, it’s not the right path for achieving every career goal. There is a reason why vocational programs still exist in this day and age. There is a good life in hard working trade jobs.
One of the greatest things about the internet is how connected we are to people of all interests from around the world. The best, and sometimes worst thing, is when we search for something online we can usually find it. This means there are other people in the world who love vintage cars, solar flares, sweaters for cats, potato chips that look like presidents, and many other random things.
With special interests, it is important to recognize them and nurture them. They will change over a person’s life, but after awhile you might notice some similar themes tying the interests together.
I started out life wanting to study animals like Jane Goodall. The idea of observational research, or learning about things without actively participating, really interested me. I stopped that path (temporarily) in college to work on Psychology. Now, I knew there were sometimes chemical reasons for people’s behaviors. Embracing acting and writing as a profession ties things together nicely. I can now show people stories about the human condition and the many different people who live in our world.

Among friends

Today I had the privilege of being the only self-advocate speaking at the Southern Maine Autism Conference. As I was leaving, my friend who was there with her agency asked me if I had learned anything new.

For those of you who have never been to an Autism conference, it is a place where people share strategies and support each other. At times when parents and caregivers feel isolated, these conferences are times when they are around other people having the same issues. Meltdowns, Stimming, ASD, IEP, ABA are all terms people freely use and understand. The reason I go to the conferences is to spread my message. I talk of hope.

Autism conferences are a way for people to interact in person when sometimes they are use to only receiving support online. It’s a special moment for me to look across the faces of people I am presenting to and see they understand what I’m saying. I write these blogs sometimes not thinking anyone will ever read them. I honestly don’t know the impact I have on people with my writing until they tell me. It’s a bit of a theory of mind issue I have when writing these things because 99% of the time I think I’m just saying what everyone else knows. Having people come up to me after I presented and thanking me just for being me; that’s a very strange feeling.

The things I learned at this conference are important as they affect me both personally and professionally, but they are not nearly as important as what I helped other people learn. I write this blog, I speak, and I share everything in my head because I hope it can help at least one person. I’ve been alone and had to learn things the hard way at times so I want to spare people some of the difficult I went through.

If you have never been to an autism conference, I’d highly recommend going to one. If you ever have the opportunity to go to one lead by self-advocates or with presentations by self-advocates: go to it. You won’t regret any second you are in that room. Trust me, we’ve been there and are some of the best at describing why we act the way we do.

Orange you glad to see me?

Most people have heard if you eat too many carrots, or other food high in beta-carotene, it will add an orange-hue to a person’s skin. This is not just a food myth, it can happen. I’ve met parents with orange kids because their diet is so restrictive.

People have restrictive diets, or are picky eaters, for a number of reasons. One of the reasons has to do with the texture of the food. I was unable to eat scallops for years because of how they were cooked for me. It make me gag just thinking about them. Some people I know cannot eat raw veggies, drink milk, or a whole list of random food things that are completely off limits.

Another big reason for restrictive diets is a sense of comfort. In elementary school, I had a cheese sandwich on Hawaiian bread with chocolate milk almost exclusively for lunch. It made life easier because I knew exactly what was waiting in my lunch box. Even now, I sometimes fall into a routine of the same foods. The only difference is now I try new foods on almost a weekly basis.

When parents ask me how they can make their child try new foods, I need to correct them. They can’t ‘make’ their child do anything. There were times my father made me sit at the table until my plate was rid of veggies. He did not say they had to be eaten and the centerpiece was often my hiding place for peas. Instead of making mealtimes a horrible or dreaded event, there are so many ways to make food fun by first including the person in the process.

What if there was one new fruit or veggie selected each week and that could be an adventure. What if there is a way to prepare or cook the food so it had a different texture? What if it looked more appetizing? What if food was fun and an opportunity for the person to have a say in their own life? Below is a picture of a fun bento box. Fair warning, if you start looking up fun bento box designs you can spend hours falling down the rabbit hole.

Photo credit Wendy Copley from wendolonia.com

Just like with addressing a biological reason why hearing is impacted, it is also important to address if there is a medical issue preventing someone from eating specific foods. There are autistic people who exclude gluten, dairy, and food additives like artificial colors from their diet. Food sensitivities are less serious than allergies, but also need to be considered. Food issues can also develop at any point in life and can also leave randomly. I was horribly allergic to citrus when I was younger, but now I can eat as much as I want. I mean, I still ate citrus when I was allergic but I didn’t care if my face hurt until I ran out of strawberries then I was more upset there was not more. A doctor can run tests to determine allergies, but it doesn’t hurt to make a note if there is a behavior or negative reaction after eating a specific food or at a certain restaurant.

Hear Ye, Hear Ye

When my brother was younger, he ignored people. This was before he had an official diagnosis so people, mainly my father, just thought he was being a brat. J would sit in the middle of a room and we would call him for dinner or tell him play time was over and he’d act as if he never heard us. When we finally did catch his attention, it was always met with “What?” It wasn’t until we saw the blood dripping down his ears one day and asked if he was hurt, the “what” revealed something else.

When some people talk, the listening party might be able to understand what the speaker is saying right away. A trait of autism is a delay in auditory processing. So it’s not like they didn’t hear you, they might still be working on how to respond or figuring out what to do with the information you said to them. Odds are, they are not ignoring you on purpose to drive you mad. That’s a waste of our time.

There’s a book my mother read when I was a child. It was called “The Cat Who Wore a Pot on Her Head” by  Jan Slepian and Ann Seidler. The story was about a little cat who wore a pot on her head because she liked the way it looked. The problem with this is she could not hear things correctly. So other animals would talk to her and she wasn’t able to understand what they were trying to communicate to her.

Illustration by Richard M Martin

As mentioned yesterday, our sense of hearing can be either a strength or a weakness. For some of us, myself included, we can hear conversations across crowded rooms. Other times, we don’t understand if someone is talking to us from two feet away because we are so focused on something we are working on. However, it is very important to address any biological reasons for a behavior. It turns out my brother with a history of ear infections was also physically unable to hear us until he had a tube put in to correct the issue. Once he fully healed and the problem remained, then we knew there was something else going on with him. Now when he doesn’t listen to us, he’s just being a 19 year old boy.

Sensory Sensitivity

Everyone in the world has sensory needs. Some people need to work in complete silence and others need to work with music. Some people can’t eat certain foods like spicy foods and others drench their food in Sriracha sauce. Some people can’t go into Walmart because it is too loud, bright, overwhelming… well that is actually most people when it comes to that specific store.

For Autistics, our sensory needs are specific to each person and can seem complicated. Unfortunately we don’t always know our sensory needs until something bad happens and we figure out, “Whoops, can’t do that.” How do Sensory needs affect us?

The affect our:

  • Taste
  • Touch
  • Smell
  • Hearing
  • Sight
  • Balance
  • Coordination

Everyone can be more aware of their own sensory needs. It takes a certain amount of self-awareness, but in any situation a person can sit back and go “What’s working for me right now?” “Is something too loud?” “Is there some smell that is overpowering and preventing me from concentrating?” “Are there too many people here?”

When we figure out what works and what does not work for us, we can better advocate for our own needs. I’ll get to advocacy a little later and explore some of the more specific sensory needs of our community in later posts.

It’s that time of year again

April is Autism Awareness month. It’s both my favorite and least favorite time of the year. I dislike it when people talk about ‘losing their children to the autism epidemic’ but I love all the advocates and self-advocates who step up even more to speak positive messages about Autism Acceptance.

This month, I’ll be doing a blog post a day related to Autism. I’ll mix in news articles, programs, technology, stories, and coping strategies. The thing is, I want to know what YOU want to hear about.

As a mental health professional, a family member, a friend, and a self-advocate there are lots of things I am able to talk about OR I know someone who is able to talk about a specific area. *wink wink*

So stay tuned for an awesome month and feel free to write suggestions for topics in the page comments (I just figured out those exist) or post something to my Facebook page. As a reader, you’ll also get some wonderful guest bloggers popping in this month.

Enjoy!