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1 in 50

21 Mar

Yep, you heard right. The CDC announced yesterday it’s new findings that show 1 in 50 school-age children have autism.

Naturally, articles instantly popped up about how this doesn’t really mean anything, the numbers are the same as they’ve always been. We’re just more “aware”. This article was my favorite: (<— sarcasm)

“You will probably see a lot of headlines about the 1 in 50. Some organizations might even try to use those numbers to scare people, to talk about an “epidemic” or a “tsunami.” But if you look at the numbers and the report itself, you’ll see that overall, the numbers of people born with autism aren’t necessarily increasing dramatically. It’s just that we’re getting better and better at counting them.”- Forbes.com

“We’re betting better and better at counting them”…??? Seriously!?

Are we as a society more “aware”. Of course. Are there probably some percentage of kids who are misdiagnosed and don’t actually have autism? Sure, the same is true of ANY diagnosis. But does that account for the ever-increasing autistic population? ABSOLUTELY NOT!

People LOVE to deny an increase and tell us we’re overreacting to these numbers. If the numbers aren’t increasing…prove it. Show me 1 in 50 sixty-year-old adults with autism.  You can’t! Because they don’t exist!

THAT is the research I’d love to see. If people are so sure that we’re just getting better at recognizing autism, then let’s look at the adults around us and see how many of them currently qualify for an autism diagnosis. How many ADULTS (ages 30, 40, 50, 60+) have autism? Let’s compare those numbers to the numbers we see today.

And for those parents out there who say they agree with this Forbes article, and don’t think there’s a real increase in autism…ask yourself these 2 simple questions:

How many autistic kids do I know?  How many autistic adults (ages 30+) do I know?

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Fluency

27 Feb

One of the presentations I attended last week was on the topic of Social Significance. Dr. Mary Jane Weiss, BCBA-D, discussed how we as behavior analysts need to make sure our goals are producing socially significant results. We should not teach skills for the sake of teaching them, but rather we need to be sure what we are teaching will be functional.

An interesting aspect of teaching skills of social significance is FLUENCY.

Fluency can be defined as a, “combination of accuracy plus speed […] that enables competent individuals to function efficiently and effectively in their natural environment.” (Binder, 1996)

Fluency is the true mastery of a skill. It is something retained, and that can be done in the face of distraction.

Think about it this way… when you’re riding a bike, you don’t have to focus on what step comes next to perform the skill. After practicing for a while, bike riding became a natural. You no longer needed to plan when to press down on the left pedal, when to press on the right pedal, how hard to turn the handle-bars. No, none of that requirs intense concentration. You can ride your bike while listening to music, talking with a friend, and watching for cars. It’s just fluid and natural.

So how does this relate to autism?

Imagine you have taught your son or daughter how to greet peers. They go to school, peer #1 says, “Hi Johnny!” 1 second….2 seconds….3 seconds….4 seconds….5 seconds… then your child responds, “Hi, Tommy!” A delay in greetings like that can be very detrimental to forming relationships, especially for young children! The child greeted back, so yes, it looks like they have mastered that skill. But the extended delay between the peer’s greeting and your child’s response was so long that by the time they did reply, the peer was already off saying hi to another child.

I have actually seen the above scenario play out many times. And, I have also seen what longer-term effects it has. The delayed child becomes labeled as “slow” or, “he doesn’t answer when I talk to him”. Peers lose interest if there is not immediate feedback. It can damage or even preclude friendships. And this is just one example of how fluency would be very important.

Imagine the skill of counting money to pay at a cash register, or getting your credit card out and swiping it…. or preparing a snack or meal…. how about showering or getting dressed…. washing your hands…. ordering off a menu…. coming over to someone when called…. All of these things are done relatively quickly and naturally for most of us. But the fluency of these skills has to be taught to many people with autism.

Mary Jane Weiss listed the following as Consequences of Dysfluency:

– missed social opportunities

– inability to keep up with the group

– difficulty being competitive in a job environment

So, I encourage everyone (parent or practitioner) to consider the importance of making kids FLUENT in their skills (as opposed to just “mastering” skills) so that they might have more, and better, social interactions and opportunities to thrive in future.

How do we do this? Same way you learned to ride a bike… practice. Give the child lots of opportunities to practice the skill. And as always, reinforcement is key to teaching any new behavior.

Premack Principle

9 Feb

I’m working with a mom who’s young son was recently diagnosed with autism. In helping her think of ways to help him eat protein, I mentioned the Premack Principle (based on David Premack’s research). I did my best to explain it to her, but I wanted to provide her with some type of handout on this strategy; a little cheat sheet perhaps. I searched online and found nothing of the sort. Some definitions and Wiki pages, sure. But no quick-guide to give to parents. So, I created one. Feel free to share with anyone you know who might find this helpful.  The awesome thing about this is that it can be used with people of all ages and abilities! (Click to enlarge)

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Happy Halloween

31 Oct

Happy Halloween!

I’ll be spending this Halloween with 2 teenage clients. I noticed online there are a few public social stories about trick or treating. But I didn’t see anything for kids too old to trick or treat, or those who prefer to stay home and pass out candy. So I made one. It’s short and simple. Feel free to use it or share on your site. Just make sure to link back to me.

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Notice

20 Oct

Let me set the scene…
2 adults, each fiercely gripping an arm of a little boy who is flailing around on a stranger’s grassy front lawn. The kid, laying there; kicking, crying, writhing. The two women each using all their might to wrestle this power-house of a little boy off the ground. Meanwhile, two bright blue shoes lay in the middle of the street.

To me….this is an obvious scenario. Clearly this child has some special needs- hence the public meltdown on a neighbor’s front lawn; hence 2 adults pulling and straining and fighting and pleading and begging him to please get up.

But to the owner of the house…apparently not an obvious scenario. Instead, his look of horror and disgust said it all… His first thought was not that something must be wrong here. There must be some bigger issues at play here. No, his first thought was “What are these people doing on my lawn!”. As he pulled into his drive way, he raised his hands and shot a look of irritation, aggravation, and anger.

He must have missed it.  All the clues were there, though… How did he not see it? How did he not notice?

He didn’t notice the struggle on my face.

He didn’t notice the pain in the boy’s eyes.

He didn’t notice the fight we were putting up just to move this boy an inch.

He didn’t notice the frustration in our bodies.

He didn’t notice the tension.

He didn’t notice the desperation.

He didn’t notice the strength it took.

He didn’t notice the battle.

He didn’t notice the toil.

 

No, he didn’t notice any of that.  How did he not notice?

Bullies

14 Sep

A new study (discussed here) reports that 46% of autistic teens and pre-teens are bullied. This is almost 5 times higher than the national average of typically developing children who fall victim to bullying. Plus, the study indicates that higher functioning kids on the spectrum are targeted more than severely disabled kids.

I guess it makes sense…people, even kids and teens, usually have compassion for those who are clearly disabled. They “feel bad” for the person, and they know it’s wrong to make fun of them. But the kid who walks and talks and goes to the same classes and plays the same sports….well when that kid does something unusual, he’s just a weirdo. It’s almost as though the more a person fits in, the more they stand out. High-functioning autistic kids are on a level playing field with their non-autistic counterparts in so many areas. So the areas they may not be up to par tend to be more noticeable (difficulty with conversation, understanding sarcasm, jokes, or social cues, difficulty relating to others emotions, etc).

So why is this happening? And how can we stop it?

Well this is where education comes in.

Educating kids about diversity, and compassion, and inclusion.

Educating kids on disabilities and how they can be part of the solution instead of part of the problem.

Educating kids on acceptance, tolerance, love…

You see, I was bullied as a kid. Junior high was torture for me. I went to school in a very wealthy beach town, but I wasn’t one of the rich kids. I was teased relentlessly for my clothes, my hair, my teeth, my music preferences, where I shopped…..and I was called all sorts of terrible names. Most of my 7th grade year I spent passing periods and lunch breaks roaming the large campus (pretending to be busy going from building to building) so that I wouldn’t have to be seen sitting alone. I would even make pretend phone calls on the on-campus pay phone sometimes to avoid people. It was really miserable. And to this day I still remember the people who bullied me. (Oddly enough, I’m now friends with a few of them on Facebook. ) But those memories haven’t left. They probably never will. Bullying hurts. And it made going to school a nightmare for me. So, I’d like to impart to whoever reads this some words that an old family friend told me when I started high school…

He said, “You never know who is looking up to you and just wishing you’d notice them. So be nice to everybody. You never know if your smile might make somebody’s day.”

I believe it. None of us know just how much our behavior affects other people. So, I think it’s important to teach kids how they can make an impact. And, to talk with them about what type of impact they want to have. Do they want to be that bully that someone remembers 14 years later? Or do they want to be that friendly person that people remember, the one who was also so kind ? What if their kindness inspired others? What if their greeting or smile or invitation to a special needs student meant the world? What if their attitude about diversity meant no one had to sit alone at lunch? What if they could make a difference? (Spoiler alert: THEY CAN!)

It’s so important to empower children and teens, and to encourage loving relationships with people, even if they’re different. And besides, once someone opens up to an autistic peer, they might just realize what a great person he or she is! And most of all, I want to impress that these beliefs and attitudes start at home. If parents foster an appreciation for diversity, rather than make it something scary or bad or wrong, their children are more likely to follow suit.

Last, but not least, here are some excellent resources for more information on how to educate children about peers with special needs:

http://www.care.com/special-needs-teaching-your-child-about-peers-with-special-needs-p1017-q598.html

http://www.education.com/magazine/article/teaching_kids_special_needs_peers/

http://diaryofamom.tjandpals.com/2012/03/04/teaching-children-special/

Person First Language

2 Sep

“Autistic person”…or “person with Autism”?

Many people and parents have strong opinions on this topic. The idea is that calling someone “autistic” is looking at their diagnosis, instead of them as a person. Whereas, saying “person with autism” is looking at the person first, and diagnosis second.

Many autistic people write about their dislike of person-first language. They assert that person-first language suggests you can separate them from the autism, which they believe you can’t. Autism is a part of them, and not a shameful or terrible part that needs to be separated. They are proud of who they are and don’t want their autism carrying a negative connotation.

Other people with Autism are passionate about their preference for person-first language. They don’t want to be defined by, or reduced to, their diagnosis. They feel calling someone “autistic” is dehumanizing the person. People are more than their diagnosis. They prefer people to look at the person, not the disability.

Personally, I vacillate between the two phrases. My own family isn’t particularly emphatic about one or the other, so I find that I interchange them. I have worked with families that use person first language, so when I’m around them, I do too. I have also worked with other families that don’t, so when I’m around them, I don’t either. But overall, my experience has been that people I’m around don’t really care either way.

I feel that the separation of the person and the diagnosis perpetuates the stigma that it’s “bad” or “wrong”; Almost as though Autism is something so terrible or tragic that it needs to be estranged, rather than seen as part of the person. (Now, I am not necessarily saying  “Autism is simply a beautiful, wonderful gift we should embrace!!!” But, I certainly don’t think it helps to overly vilify the diagnosis.) We use descriptors all the time in everyday life; “blonde girl”, “tall guy”, “fast driver”, “loud teacher”, “shy kid”, etc, etc, etc.  And, in using those descriptors, we all realize those things do not define the person. They are just a way to quickly describe or categorize. No one would suggest that calling me a “brunette” is confining me, or reducing me, to a hair color. Everyone knows I am still a whole person, and pointing out my hair color is just looking at one part of me…not denying all my other qualities. So I think it’s the same with “autistic”. It’s used to describe something about a person, not to negate their wholeness as a human being.

With that said, I understand people are going to have strong opinions on both sides of the fence. And, that’s okay. Because I don’t feel extremely zealous one way or the other, I can pretty easily adjust my language based on my audience at any given time.  And interestingly enough, from my research online, it seems most autistic people actually prefer to be called “autistic” and rebuff person first language.

I’d love to know where you stand on this issue.

Here are some excellent blogs on this issue:

http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

http://www.stuartduncan.name/autism/the-last-word-on-person-first-language/

http://www.journeyswithautism.com/2012/04/25/the-problem-with-person-first-language/

http://suite101.com/article/personfirst-language-and-autism-a56063

http://illusionofcompetence.blogspot.com/2012/08/disability-first-autism-is-not-accessory.html

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