Things I learned over the past year about: autism, and the autism community.

Things I learned over the past year about: autism, and the autism community.

1: Children need to be screened for autism sooner.

2: More services need to be made available for persons on the autism spectrum

3: Autistic vs. Person with Autism vs. Person on the Autism Spectrum. Learn the distinction, implications, and what each individual prefers to be called

4: Autism self-advocates need to be included in the discussion about their issues

5: Parents, siblings, & educators are a force to be reckoned with.

6: Researchers need to make newly found information easily accessible and easy to understand.

 

2014 Goal: My goal of 2014 is to learn more about the disability rights movement, autism interventions, and cross-cultural perspectives on autism.

Order up!

Image

So, I’ve got a problem. It’s a Friday night and everyone’s piling into the restaurant for a quick bite to eat. You’ve got my parent’s in the back, cooking up a storm in the kitchen, and you’ve got little old me working the tables. What’s the problem you ask? Oh nothing, just the fact that I’m the only waiter at a restaurant that seats about 50. My brother has about 50 different personalities that all need service and attention. At table 3 he’s having a fit because I haven’t reached his table yet. At table 8 he’s drawing on the walls, and at table 1 he’s trying to walk into the kitchen to cook his own food. As I try not to pull out the 5 strands of hair left on my head, I ask myself, “What can I do”.

So many times have I asked myself, “what can I do to help my brother talk”, “how can I calm him down when he’s screaming at the top of his lungs”, “how do I help other people understand autism so that the world can be a safer place for him”? I still don’t know the answers to all of my questions, but in the meantime, the tables need to be attended to.

Being a sister, not a parent, to my brother puts me in a unique situation. I’m not completely responsible for him, but I have a responsibility to my parents, to him, and to our family, to help out as much as I possibly can. I’m not a parent, but I’m old enough to know how to mediate situations between my hardworking parents and my boisterous brother. Having worked in a kitchen before, I know that  when the chef says “Order up!” I’ve got to pick up the plate and make those customers happy.

A household with autism operates very much like a busy restaurant. With that being said, as long as my parents keep cooking up the food, I’ll be happy to deliver the goods to my rowdy little customers!

-Ijeoma

Idea Bank #1

I’ll preface this post by saying that I’m trying out a new blog segment I’ll call my “Idea Bank”. Any idea that I have to further aid in the understanding of autism and other developmental disabilities goes in the bank. As far-fetched as some ideas I come up with may be, I hope in the future to implement some ideas I come up with. I’ll also try to highlight some of the exciting autism-related research that I come across.

Idea Bank #1

I would love to read a research article titled:

The different names of autism: Exploring different cultural understandings of autism.

The title may need some work but it gets the point across. This idea sparked from a conversation I had with friend of mind. While conversing about how little we know about certain developmental disabilities, I expressed my wish to be a part of a research team that explores how different cultures handle their autistic communities. After all, many countries may have different names for autistic individuals: “cursed”, “psychic”, “spiritual”, etc. I think the key to helping individuals with autism is to properly diagnose them. In order to properly diagnosis autism, we need to find out its many names.

I recently found an exciting new research project that’s goal is similar to what I suggested above. “Culture and Autism: How Cultural Norms Shape the Neurocognitive Development and Societal Understanding of Autism”. I’m excited to see what insight will be gained from this! Kudos to the principal supervisor: Dr. Atsushi Senju (Birkbeck), and the co-supervisor: Dr. Liz Pellicano (Institute of Education).

Compassion Fatigue

        So I was on the Atlanta Journal-Constitution website and I came across an article titled Overcoming compassion fatigue, by Laura Raines. The article stressed the importance of self-care and offered suggestions on how nurses can overcome mental exhaustion. Although the article specifically focused on nurses, I think by the show of hands, almost everyone in the room can relate to this topic.

As you may or may not know, my 7 year old brother is on the autism spectrum, and because I am a recent college grad and haven’t a penny to my name, I serve as my brother’s unofficial occupational therapist, speech therapist, music therapist (guess those 4 years of band paid off), art therapist, and babysitter. Yes, I have a plethora of unofficial titles, but unfortunately “unofficial OT” isn’t really resume- worthy. With all of that being said, there are several times where I feel like too much is on my plate. I’m sure my parents have their share of exhaustion BUT this blog post is about me #narcissism. They can drive to their workplace, talk to their friends, go to the store, and come home later on in the day. I on the other hand am home 24/7, have to study for the MCAT 10/7, and watch my brother when school is over 7/7. It’s exhausting to say the least. But of course, I have read and come up with several solutions to the problem!

1.Getting the mail.

As sad as it sounds, getting the mail is one of the most exciting parts of my day right now. I’m exaggerating a bit, but getting the mail gives me a reason to go outside and get some fresh air. I’m usually in my house, at a desk, hunched over with my MCAT prep material trying to retain some info—and I often forget that there is such a thing as “outside”.

2.Talking with people my own age.

Even though I have to babysit on a regular basis (and happily do so for the most part), there are times where I desperately need get out the house. At times like this I tell either parent that I’m having lunch with a friend, and run before they change their mind. If I can’t do lunch, a long phone call will suffice.

3.Chess + Music

I designate at least 2 hours every day to playing chess on my computer and listening to music. Maybe can go pro one day! (Probably not).

-Written by Ijeoma

Let me know how you handle mental exhaustion in the comment section below. Thanks for reading!

Discipline

I haven’t the slightest clue on how to effectively parent a child, but I am well-versed in disciplining a child, and by child I mean Mark. Let me just start by saying that until the age of 5, I had no idea how discipline him because he kind of did his own thing. He made little to no eye contact and barely spoke any words. He mastered the art of ignoring people, and I wasn’t even sure if he could understand what I was saying. It made disciplining him hard because I didn’t know if he knew what the “time-outs” or “no’s” were for. Now that he’s gotten older, and has shown me clear signs that he understands right from wrong, I have no excuse not to discipline him. And let me clarify what I mean by discipline.

Before I went off to college I never really scolded him or punished him for anything he did wrong. My parents did the disciplining. Actually, most time he got upset he would come to me and I would either sing nursery rhymes relentlessly or read one of his favorite books to him until he calmed down. During college, I would come home on weekends/breaks—and my parents noticed that he would have especially good behavior when I was around. I guess he didn’t want me to see him doing anything bad (i.e. throwing huge tantrums, not listening to instructions) because I was his source of entertainment. I mentioned the power of “incentive” in my Communication ABC’s post, and this really comes to play when getting Mark to behave himself. So now that college is over, and I’m starting to see Mark’s tantrums in their full glory, this is how I discipline Mark—I give him the glare of disapproval. No reaction is the best reaction to his shenanigans.

Image

If Mark purposefully starts a big commotion over not getting his way, all I do is stare at him, and 50% of the time he stops fussing/crying.  If its bedtime, and he starts having a meltdown because he doesn’t want my mom to put him to bed—I just pop my head in the room, stare at him disapprovingly, and he eases up for the most part.  I call this “disciplining” due to the fact that it gets the job done—in terms of letting Mark know that what he’s doing is wrong. This method is effective for me because Mark has yet to see me completely angry and at my wits end with him—and he does his best to prevent THAT from happening. Hopefully I can keep this up for a while!

written by Ijeoma

The Four Levels of Crying

The 4 levels of crying

  1. The Crocodile Tears
  2. The Action-Potential
  3. The Divider
  4. The Point of No Return (BOSS STAGE)

Mark has very distinguishable cries. And depending how me, myself, and my parents respond to these cries means the difference between a level 2 cry, and a level 4 cry.

Level 1: The Crocodile Tears

When Mark is being petty and doesn’t get his way, he’ll cry crocodile tears. This cry is identifiable by the lack of tears coming from his eyes. It’s a pretty self-explanatory level, and pretty funny to watch actually. It’s nice to know that at 7 years of age, he’s already showing his acting capabilities.

Level 2: The Action Potential

Image

**ship=tantrum

Quick Biology Lesson: Action Potentials are “all-or nothing” signals. Once the stimulus reaches a certain threshold, the action potential fires, and cannot be undone. Main point: once the ship sets sail, it’s gone . This level is tricky and hard to amend depending on the situation. Let’s say Mark was running, and then he fell and hurt his knee. I have less than 4 seconds to “make it all better” or else he’ll full out bawl. If any cause of his discomfort/annoyance is irritating enough and he starts to get upset, I usually have about 4 seconds to ‘sing every song he likes and dance like a monkey’ or else the ship sets sail i.e. he cries. People, let’s keep these ships docked; dance your heart out.

Level 3: The Divider

If Mark gets to this stage, it’s pretty bad, but still amendable. Here we have the typical, all too real “cry”, accompanied with your usual jumping and uncontrollable tears. Consoling still works at this stage, but most of the time you just have to wait it out, and he/she’ll come around after a few minutes. The is the stage where ‘time-outs’ are issued, or maybe a few light ‘spanks’ are given here or there depending on the reason for tears, but either way this stage is called ‘The Divider’ for a reason. This is the final level for Neurotypical (NT)/Non-autistic children; however, the final level of crying is reserved for children on the autism spectrum.

Level 4: The Point of No Return (aka. BOSS STAGE)

For those of you not familiar with video games, at the end of off all of the levels, one reaches the final level where he or she must fight the boss of the game to win. This, my friends, is the final level of cries. Only the most powerful are equipped with the strength and skills needed to handle such a level. Parents and siblings of children on the autism spectrum experience level 4 cries on a regular basis (or irregular basis depending on how ‘high/low-functioning’ their child is). All I know is that when Mark was 2, I felt as though he set up camp in level 4, and never cried on any other level. In public it would be ESPECIALLY awkward because many people don’t experience Level 4 cries often—and are often times bewildered.  At age 7 Mark has matured. He still has his meltdowns but they are way more manageable. My solution for level 4 cries is to: have patience, take deep breaths, and find your happy place!

-Written by Ijeoma

Communication ABC’s

One difficulty some parents may have with their children, autistic or not, is: lack of communication. I sometimes think my 7 year old brother might as well be a teenager with an iPhone. Parents struggle with communicating with their kids for various reasons.  In my parents’ case, they just haven’t mastered my brother’s language yet. Lucky for them I happen to speak Mark’s language fluently.

Now folks, usually I charge for this service, but because we’re a community of sharing, I’ll let you in on the secret. Parents, if you have an autistic child, and other children who are not on the spectrum, spy on your kids playing. Get out the camouflage, a notebook, some walkie-talkies, and hide behind that huge chair in the playroom. You’ll be amazed at what you’ll see. One thing I noticed is that Mark acts differently depending on who he’s interacting with. If my parents have left for work, and it’s just me and him alone in the house, he’s an angel.  He’ll repeat the words I ask him to repeat, he’ll sing some songs, write words, do some addition problems, watch Super Why, and play games on the computer. The second my parents get home, he’s like “let the games begin”.

I noticed that when he’s in school, or with me, he listens and follows instructions well. But with my parents, he has learned how to manipulate them into doing what he wants, and acts up the second he doesn’t get his way. This is the reason: incentive.  Autistic children are very observant. They’ll act as if they’re not paying attention, but they really and truly hear every word, and know what’s going on around them. See with me, Mark has incentive to listen and interact with me to the best of his ability because his reward is that I’ll play with him and give him loads of attention. He doesn’t act up because he knows that I am the ticket into the theater and he doesn’t want to miss the show. With my parents, they don’t play with Mark as much, and because they’re usually tired from work, they’re not nearly as much fun as me–Just keeping it real. So Mark has no incentive to listen/pay attention to them because it’s not like he’ll be missing out on anything.

So to all you parents, sisters, brothers, and guardians out there, my message to you is: be fun, and develop a POSITIVE incentive for your child/sibling to listen to you. Let me know if you see any results or know of any other methods you use to improve communication between your child/sibling.

-written by Ijeoma