World Autism Awareness — Will You Celebrate It?

Autism_Blue_PhotopinFor 25 years, autism has been part of my life.

Not just because my little brother is autistic, and not just because I used to teach autistic children back in a previous career.

Autism has been part of my life because the lessons I learned in that world matter.

Here are 5 lessons that particularly resonated:

1. “Please” and “thank you” imply that a request is optional.

One of the most difficult things for me to learn when I was going through my training was to leave what I considered good manners at the door. The autistic brain is a very concrete one which often makes manners and pronouns difficult to grasp.

This lesson has carried into my own parenting. I rarely tell my Little Bean “no” when she’s heading toward disaster — I tell her to “Stop.” It’s concrete and immediate, and so far, it works.

2. Grandmas are damn smart.

One of the first things you learn when you work with autistic individuals is the Premack Principle, or “Grandma’s Rule”. Premacking a child’s schedule means to start with an activity they are ambivalent about, followed by a disliked activity, followed by a like and so on. Premacking their child’s schedule is how the wise parent gets their kid through the day. We need to do “X” before we can go out and play. (See? Grandma.)

If you set up a storyboard about the things that will happen in an autistic person’s day with pictures, so much the better. Remember, you’re dealing with a precise individual.

3. Few autistic kids understand the concept of time.

Oh, they learn about time if you tie it to a reward – most of these kids are brilliant after all. But that intrinsic knowing that this is ten minutes and it takes that long to brush my teeth, wash my face and put on my clothes for school is almost always missing from an autistic kid.

Imagine how you’d feel if you had no idea how long you had to sit in a car or do something you hated – you get through activities you hate only because you know when they end.

4. Autism is like having all your senses hopped up on crystal meth.

Imagine the world if you sat in a restaurant with your over-sensitive senses sparking at warp speed. You’d smell the five different shampoos used by your surrounding diners, hear the clink of silverware, the air rushing through the vents, the hum of traffic outside. And have no ability whatsoever to tune all that sensory input out.

5. Positive reinforcement fixes everything.

In #4 above, I mentioned all the sensory input bombarding an autistic person in a restaurant. This can be overcome, it just takes some work. Whatever it is that’s important to you, break it down into small reinforceable steps and prepare to do each step many, many times.

Today is the 7th annual World Autism Awareness Day.

Every year, autism organizations around the world celebrate this day with unique fundraising and awareness-raising events. How will you celebrate?

  • To tweet: Use #AKA (Autism Kindness Acts), #LIUB (Light it up Blue) or #autism
  • To share your events and photos, today and through the month of April, go to http://liub.autismspeaks.org/welcome.
  • If you see something lit up blue this month, share a smile and warm moment for the person who’s bringing awareness about autism to their corner of the world.

Has autism touched your life in some way? If so, did it teach you any lessons that really resonated with you? Share them down in the comments! Enquiring minds love to know these things here at More Cowbell!

~ Jenny

photo credit: anotherlunch.com via photopin cc

About Jenny Hansen

Avid seeker of "more"...More words, more creativity, More Cowbell! An extrovert who's terribly fond of silliness. Founding blogger at Writers In The Storm (http://writersinthestormblog.com). Write on!
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16 Responses to World Autism Awareness — Will You Celebrate It?

  1. Excellent post, Jenny, and you speak from the heart with your personal experience. The more we talk about this, the more we all learn and grow in ways that can only benefit every one of us. Thanks!

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  2. I love this! I think autism is every parent’s nightmare. It was the very reason I held back on some of my kids shots. Now watch me start a discussion on that one. lol. And this was back in the day when they gave out half of the shots they give out now. Holy Cowbell, it freaks me out. And then hubby just saw on the new the other day that the numbers for autism have skyrocketed again.

    I have the utmost respect for those who are autistic or have family member with autism. I have no problems. But I must say that I love Grandma’s way. It works well even if your children aren’t autistic. You’re kind of sandwiching the negative with positive strokes. It’s a winner. And no wonder you have such patience Jenny. You have good people/children skills that not everyone has.🙂

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    • Jenny Hansen says:

      It’s so funny how others see us, isn’t it? I think I’m sorely lacking in patience, and my husband would agree. However, about teaching and such? I’m endlessly patient. It’s odd.

      I feel blessed that I had a late-life baby who came out so blessedly normal. There are so many risks to that, autism just being one of them. However, the beauty and the smarts of these challenged children is incredible. It boggles me.

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  3. Cate Russell-Cole says:

    Jenny, thank you do much for this post. I have friends who have autistic children, but haven’t dealt with it hands-on myself. Your post was very helpful to me.

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    • Jenny Hansen says:

      Thanks, Cate. The thing that’s always been surprising to me with ALL children is how much they’re able to pay attention to details we don’t even think they’re aware of. Autistic kids have that times TEN.🙂

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  4. Kelly Byrne says:

    Jenny this was a terrific look into the ways and minds of autistic people. Really very helpful. I don’t have any experience with autism, other than hearing stories from my mother who used to work with autistic children. I’m just wondering if you’ve written more about your experiences with your brother or with the children you taught, or if you’ve ever fictionalized a story. The details and information are really great (to those uninitiated) and I would love to read more.

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    • Jenny Hansen says:

      Thanks, sweet Kelly! I know, just from reading your comment, that your mom rocked. It’s a very challenging job to hold long-term.

      I’ve written some stories down about the kids I worked with because they were so flipping amazing and inspirational. However, I’ve not fictionalized any of it (yet). I imagine it will work it’s way in to the writing someday.🙂

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      • Kelly Byrne says:

        Well when it does, I hope you make it available to us, because, truly, it’s so special how you convey the way they see (hear and feel) the world. Your admiration and love really shines through in the writing. I want more!🙂

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  5. This hits close to home because my son is autistic. I haven’t learned all of the lessons you have because I’m in the ‘Mom box’ and moms are NOT teachers.

    I’ve learned that being the mother of an autistic son can be frustrating. If he thinks the word ‘cupboards’ is stupid, he’s going to say ‘covereds’ forever (as in, you put dishes on a shelf, close the door and they’re covered – besides, you don’t just put cups in there). If I interrupt him at the wrong time (and finding a right time is a crapshoot), he can be a very unpleasant person to be around. He also believes dogs and cats can be reasoned with, and no matter how many times I explain that they only understand simple commands, he still tries to convince them to see things his way.

    I’ve learned I am a lot more tolerant than other people. C.J. likes to ignore everything and everyone around him while he paces and makes sound effects (he does a very impressive machine gun). It drives other people nuts. To me, listening to him is probably as relaxing as getting a massage is to someone else.

    I’ve learned that contrary to what one of his tests claimed, my son is NOT defective. He has challenges, he is not broken.

    I’ve learned that I’ll never stop being the mom. I refuse to put him in a group home, so I’m always going to be responsible for him. And that it scares the hell out of me to think about what will happen someday when I’m not here. So I teach him to cook simple meals, to clean up and do dishes, to wash and dry his own clothes so that one day he might be able to be a little independent. Maybe some sort of assisted living that’s not a group home.

    Mostly I’ve learned that while this isn’t a life I would have chosen for him, it’s okay. I enjoy being his mom. He’s smart, funny, and sarcastic (wonder where he got THAT from?), and I wouldn’t trade him for a “normal” son for all the money in the world.

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    • K.B. Owen says:

      Kristy, it looks to me like you and C.J. are blessed to have each other! Thanks so much for sharing this with us. Hugs.🙂

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    • Jenny Hansen says:

      Kristy, thanks so much for sharing your story. Your son sounds amazing. And I understand perfectly that breathless worry of wondering how he’ll be after you’re gone.

      The more services and therapy you get him hooked up with now, the better he will do throughout his life.

      The Judevine Center in St. Louis was where I worked out of and they had programs for everything from assisted living to assisted employment. There will be something like that in your state.

      p.s. I think “covereds” makes PERFECT sense.🙂

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  6. K.B. Owen says:

    Jenny, fab post! We’ve been fortunate to have 3 healthy sons, all without any profound challenges such as autism. One has ADHD Inattentive subtype, which was tough enough in terms of navigating the public school system, especially since he is also gifted…try walking that fine line, yikes. I do have a dear friend whose younger son Brian (a sweet kid) is severely autistic, very sensitive to noise, and has some other cognitive difficulties. Language is a big hurdle, and the family uses a combination of signing and some code phrases. My oldest son Patrick used to babysit for them (so they taught him ways to communicate with him), and Brian just LOVED Patrick. It was a terrific experience for my son, too, to learn hands-on, and understand a little bit more of what others go through.

    Karen, I’m assuming you are referring to the idea that vaccinations cause autism. What really got that perception going was the research by a doctor – Wakefield – in England. The way I understand it, the data from that report was discovered to have been falsified, and the article was retracted by The Lancet. The man’s license to practice medicine in Britain was revoked.

    I’m not saying that vaccinations are risk-free – I respect the right of every parent to make the decision they consider best for their own child. Just speaking for me, I believe the vaccinations fend off some really horrible diseases that scientists worked tirelessly to find vaccines for – polio, smallpox, tuberculosis, etc. But the diseases do come back when a large number of people stop getting the shots. After Wakefield published his findings, for example, measles started coming back to Britain and Europe. His findings understandably scared the crap out of a lot of parents.

    Jenny, in case anyone is interested, here’s a link to an article in the Journal of Pediatrics (March 2013) that talks about exposure to antibody-stimulating proteins and polysaccharides in vaccines (this is the exposure people worry about, now that the thimerosal is out of all children’s vaccines): http://jpeds.com/webfiles/images/journals/ympd/JPEDSDeStefano.pdf

    Sorry for the long comment!
    ~Kathy

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  7. Great post Jenny. I don’t know much about Autism, but it seems to have become more prevalent in society this past ten years or so. I see it more in magazine and news articles. I think it’s because the medical community are just really understanding it now.

    I give you big props for working with those who have Autism as it must be challenging and you must be very patient.

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  8. Thank you for this post, Jenny. Grandma’s Rule is useful for every parent, and no kid under 5 understands the concepts of time and hurry very well. Remembering those make it much easier to be a patient parent. Especially with my son who has sensory integration issues and maybe Asperger’s syndrome.

    Like Kelly, I’d love to hear more stories about your brother and the autistic kids you worked with.

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  9. LindaGHill says:

    Nice article – it touches on many of the things Autistic people deal with daily. My eighteen year old son is severely Autistic.
    Thanks for raising awareness! It’s important that people know what they’re looking at and have an idea of how to deal with it when they see an Autistic person out in public.

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