One in 68 Children has Autism

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Some considerations when working on improving communication deficit

November 18, 2013 2:21 pm Published by

Children and adults diagnosed with Autism Spectrum Disorder have persistent deficits in social communication and social interaction across multiple contexts as one of the symptoms. This impairment is usually manifested in lack of social-emotional reciprocity, poor integration of verbal and nonverbal communication and difficulties adjusting behavior to suit various social contexts. Delays in communication usually vary in severity ranging from monotone speech about preferred topic to a total absence of verbal communication. Often individuals with ASD do not effectively perform the single most important task of communication and language, and that is expressing their wants and needs (i.e. making requests, exhibiting mands) and, as a result, they have very little control over what happens to them in their daily lives.

Further, multiple researches has shown that communication impairment is correlated with an increased risk of challenging behavior and reduced opportunities for community involvement and therefore it is understandable why a huge amount of intervention research has focused on developing successful procedures for improving communication skills of individuals with ASD.

 In most cases, the traditional developmental model of language represents the basis for teaching communication and language skills, however in this model, the primary unit of communication and language is the word and words, signs, pictures, or symbols are taught without much regard to the circumstances present during instruction. For example, some expressive language is taught as “labels” (“car”, “table”, “spoon”), some as “answers to questions or responses to statements” (“more”, “fine”, “please”, “hello, my name is___ “) and some as “generalized requests” (“eat”, “drink”, and “break”). For children and adults with ASD, the words, signs, or pictures they learn in one circumstance, don’t tend to occur in other circumstances without additional instruction. In many cases, this result in little to no expressive language or communication responses that are useful or important to the person, in other words, the person does not learn how to make specific requests (i.e. “no mands”).

Very often, this also results in problem behaviors. Individuals begin to communicate by screaming, dropping to the floor, hitting, spitting, kicking, biting, etc. and, if these behaviors result in what the individual wants, even intermittently, these same behaviors function as either specific or generalized requests (“problem mands”) and tend to occur again and again…Then, usually a clinician is asked to conduct a functional assessment in order to develop a plan to reduce the frequency of the problem behaviors and replace these behaviors with more appropriate alternatives. Often, these “replacement” behaviors are either a limited array of receptive skills (following directions or completing assigned tasks) or “generalized requests” for attention, escape, or access to categories of preferred items and activities (i.e. eat, drink, play, more, please, etc.)

When the only “replacement” behaviors are receptive skills, we are teaching poor speakers to be better listeners and when the “replacement” behaviors are generalized requests, we are teaching poor speakers to be non-specific speakers.

Neither is adequate…

Ideal practice should include teaching individuals to make specific requests (SPECIFIC MANDS) and expanded array of receptive skills (following directions, completing assigned tasks, waiting, sharing, and accepting no) (GENERALIZED COMPLIANCE).

In other words we should be teaching poor speakers to be effective, specific speakers who have more control over what happens in their daily lives while also teaching them to be good listeners in a wide variety of commonly occurring situations. Under these circumstances we could expect to see that when individuals have more control and power over what happens in their daily lives they tend to exhibit far lower rate of problem behavior.

Nevena Savic, MA

 

I’m All Ears [Guest Blog]

January 17, 2012 6:46 pm Published by

by Lydia Wayman

Like many with autism, I am really, really good at holding my ears.
From the time I was wee little, I’d jam my fingers into my ears at fireworks and movies.
Of course, I’ve since upgraded to headphones for such events…
But I still hold my ears closed tight, and not just at auditorily offensive things.
If something is scary,
Or bright,
Or if I’m just not quite certain,
My hands go to my ears.
When we were in Disney World, all the photos that the rides took of us… my hands were to my ears.
And I got to thinking, just now, about how my figurative hands are invariably parked at my figurative ears, too.
Though the story doesn’t matter much, someone said something that maybe, could have upset me yesterday.
But I wasn’t sure.
Hands in my ears, I texted (my friend) Leigh to ask her if I “should” be upset.
And I waited, teetering on the verge of upsetness for more than 24 hours till Leigh had a minute to respond.
She did.
Not upset, it was decided. Hands removed from ears.
And how silly is that? That I had to hold my ears while waiting for someone else to tell me if I should be upset?
Why can’t I say, darn it, that rubbed me the wrong way and I’m a little angry! I should go talk to that person!
Or else, more likely for me, yeah, that wasn’t the nicest thing to say, but it’s not worth getting bent out of shape over.
I have a mind of my own, after all.
Enough with the plugging of the ears.
Experience the world for all it’s worth.


Lydia Wayman is a 23-year-old Pittsburgher who loves cats, writing, more cats, and more writing. She also has autism. Lydia found her voice through typing and uses her writing ability, combined with a degree in education, to blog, write books, speak, and consult for families. She believes that a girl with a dream and a keyboard can change the world and has set out to do just that.

Never Beyond Reproach [Guest Blog]

December 13, 2011 8:20 pm Published by

I type a lot about how I hope people will see people with autism, people like me. I ask, I beg that people reconsider appearances… whether it is the appearance that I am rude or demanding, or the appearance that I am disrespectful, or the appearance that I don’t consider others’ feelings… please, I say, please look past what it looks like and try to find out what it is!

Lest you wonder, the above descriptors are very commonly assigned to people with autism. Now, read carefully: In no way am I saying, “But I can’t; I’m autistic!” No, no. I’m saying… look, certain things are harder for me and I take a little (er, a lot?) more time to learn them because it is in my nature that these things are difficult for me. Things like manners, social skills, and so on. Autism is an invisible disability, right? This means that, frequently, people say, “Oh, I know, you’re autistic,” and then still expect me to act just like everyone else. Or, when I was younger, “But you’re so smart, I think you can figure it out!” Meanwhile, I had no idea what to do!

I wanted to tell you a short story from last week so that you can understand that I never mean to say that I am above reproach. Not for a second. I make the same mistakes I’m asking people not to do!

We were out to eat, staff and I, and in line in front of me was a little boy, maybe eight years old. He was jumping, hitting, whining, screaming, and otherwise acting out. He ordered food and rejected it twice. They got to the end of the line, and the boy changed his order again! His mom appeared unaffected by this. Me, well, it was 3 PM and I hadn’t had lunch yet, and I just wanted my food, which was right there. But, I had to wait for this picky pants boy and his mom to pay for their food before I could pay for mine.

And then it hit me.


Loud music.
Shiny surfaces.
Crowded room.
Bright lights.
Dang. I bet that boy’s autistic. I bet you my bottom dollar he’s overstimulated and can’t think straight.
How often do others think the same things about me? And here I am, judging, for goodness sake!
It’s so much bigger than, “Hey, I’m autistic, cut me a break.” It’s…
Hey, I’m a single mother of four, I worked 12 hours today, and I can’t help that the baby’s screaming.
Hey, I’m unemployed, even though I’ve been searching for a job for six months.
Hey, I was in an accident in Iraq and I don’t walk so fast as I used to, .
Hey,
Hey,
Hey,
I’m doing the best that I can.
Can’t we all cut each other a little break sometimes? Give your fellow human the benefit of the doubt.
It’s so much bigger than autism.

Lydia Wayman is a 23-year-old Pittsburgher who loves cats, writing, more cats, and more writing. She also has autism. Lydia found her voice through typing and uses her writing ability, combined with a degree in education, to blog, write books, speak, and consult for families. She believes that a girl with a dream and a keyboard can change the world and has set out to do just that.

Stuck and Chatter [Guest Blog]

November 11, 2011 9:10 pm Published by
As I’ve said before, I am me and I think I’m perfectly normal. I don’t know any other self, any other mind or body, and so how could I feel like I’m lacking or unusual? I can’t. And I don’t.
But I do spend quite a lot of time lost inside my head. It hurts, literally hurts, to be pulled out and forced to engage. Sometimes I can’t and I shut down. Today, staff was here and I ate my potato and typed and just went away for a while. Staff knows not to talk to me or anything else when I’m either shoving my face in the cat or typing. That’s my time, and that’s my signal to them that I need a break. When I’m ready, I come back again.
Nobody ever asks me what goes on in my head. They ask what I think, or how I feel, or what I believe, or for my perspective… but that’s different. That’s what my mind does, my being. But my head does its own thing altogether.
Two things predominate in my head. One is the stuck. I’m always stuck. I get one thought, and that’s all that exists and that becomes my everything for the time being. As you may (should?) know by now, Elsie P is the number one subject of the stuck. I’ve been stuck on my cat for almost 14 years, and guess what? It’s not going anywhere. I can get stuck on needing something, wanting something, wanting someone, worrying about something, seeing something, going somewhere… you name it, I can get stuck on it.
There is good and bad to the stuck. On the one hand, I can be deemed obsessive and maniacal and even inconsiderate. So, your dad is sick? Well, I have a cat. My cat is Elsie Penelope. She’s nearly 14 and has little white toes and a nose like an eraser…
But the good is that accomplish a lot, most especially what I set out to do. I have a one-track mind, and if I have a goal, chances are very, very good that I’ll meet that goal. Like, if I want to write a book… or if I want to be a speaker… or if I want my dog… it’s gonna happen.
There’s another common theme in my brain, though, and that’s the chatter. My brain just goes, and goes, and goes… and it makes zero sense. You know how you dream when you’re asleep and it’s senseless? Well, my brain has auditory dreams 24/7 and they’re ridiculous. Sometimes I just sit and listen to the chatter… “Wigwam. Z, Z, Z. High school band pants. Pea-coat green…” and so it goes, on and on. It can be tough to catch, because it’s like looking directly at a star… if you look sideways at the star, it seems very bright, but if you look right at it, it’s not very bright at all. Well, with the chatter, if I listen directly to it, it gets very quiet and hard to hear. So I listen for flashes, and I entertain myself.
My revelations (that’s what I call a new realization or synthesis of two concepts that I’ve never joined before) do not usually come from within my mind. They come from without. I just… come upon them, and there they are. I probably get a revelation between one and four times a week, and sometimes that becomes the topic of the stuck for a few days. Then the chatter, well, who knows what it’s doing.
It can be really, really hard to focus beyond all this stuff! I tend to fall into my head when people talk to me. If you talk for more than… I should really time it sometime so I can be accurate… oh, say thirty seconds?… I’m somewhere else. The chatter has begun again (I can turn it off long enough to listen to a few sentences), and I’m back to the stuck. And then add in trying to sort through external sensory input… and really, I’m not really taking much in anymore.
The good thing is that the stuck and the chatter and the sensory issues weren’t quite as bad when I was younger, so I was able to learn. I know for a fact I couldn’t handle a classroom environement anymore. I wouldn’t take in anything. I’m lucky I remember what class I’m taking in bible study… but I honestly don’t know anything much that he says.
I’m not saying that every autistic person has the same head issues I do! Everyone is different, to be sure. I just thought I’d explain mine (believe you me that this was NOT easy to figure all this stuff out; I’ve been working on it for months to be able to type this about it).
I don’t like to leave on a negative (i.e., “Here’s all the junk going on in my brain and woe am I for it.”) No, no. That won’t do. And so, I give you, “How you can interact with me in light of this information.” Cause, see, I try really, really hard to be polite, so I’m not likely to stop you and ask you to change your style. I feel guilty. I spend way more time than I let on… well, confused.
  1. Slow down.
  2. Less words please.
  3. No soliloquies. Give me a sentence or two, and stop. Let me take it in. Check if I heard you. Then continue. What happens if you give me more is one of two things: either I tune you out, or I latch on to one word or small idea within your speech and respond only to that, because I can’t process all of it.
  4. I listen to the loudest thing, which includes the chatter in my head. I cannot block out something louder than you and listen to you anyway. I simply can’t hear you. If it’s too loud, we need to go somewhere else, or we need to switch modalities.
  5. If I repeat what you say more than once or twice, or if I ask you to repeat it more than that, please write it down for me. Text it to me. Email it to me. Type it up on my iPod for me. It’ll sink right in.
  6. If I’m not really responding and you’re frustrated (Dude, come on… I just told you my whole life story and all you have is “oh”?), ask me if I can type for you. You’ll get a lot more.
  7. I hope I’m not asking too much. I really hope. I’m trying to make for an overall positive communication experience for both of us, keeping everything in mind that’s making it challenging.
Lydia Wayman is a 23-year-old Pittsburgher who loves cats, writing, more cats, and more writing. She also has autism. Lydia found her voice through typing and uses her writing ability, combined with a degree in education, to blog, write books, speak, and consult for families. She believes that a girl with a dream and a keyboard can change the world and has set out to do just that.

On Identity [Guest Blog]

October 20, 2011 6:39 pm Published by
Lydia Wayman, guest blogger

Since I’m contributing to the QSAC blog for the first time, it seems appropriate that I should begin my first post by telling you a bit about myself. My name is Lydia. I’m 23, but since I can’t stand the number 3 or multiples of 3, I prefer to say that I’ll be 24 in December. I’m entirely obsessed with my nearly-14-year-old tabby cat, Elsie Penelope. I’m a writer, through and through. This brings me to my last point, which is that I am, in fact, autistic, which for me, means that I don’t do nearly as well verbally as I do when I type. Not infrequently, I can’t speak at all. Typing has given me a voice in this world.

Perhaps surprisingly, I wasn’t diagnosed with autism until just a few weeks after my 21st birthday. My best friend in college knew that I was autistic upon meeting me, and she brought it up for me to consider in September of 2008. Many adults with autism report that they feel like someone wrote a book about them when they read about the subject. Not so much, for me. Actually, when presented with the idea, I balked.
Why would a moderately affected autistic young woman fail to see herself in a description of autism? Well, I didn’t have any sense of self or theory of mind at that point. My memories, prior to the age of 21, are only sensory impressions, and muddled at that. I actually can’t remember what I thought, how I felt, or what I believed about anything. I had no idea that I love cats, or that I tend to be a pessimist, or that I’m very honest and loyal. Nothing. And so, for 21 years, I had no identity whatsoever, and least of all with respect to things like behavior such as are described in a list of autism traits.
After this revelation, though, for a time I saw myself as autistic and only autistic. I suppose this is a typical reaction to such a diagnosis coming into one’s life… to hyperfocus on it for some time. Essentially, I saw things through autism glasses, so to speak. I’d say, “Is that why I lose my speech all the time!” and “Is that why I melt down in public!” I was beginning to make sense of myself and my world.
Over time, some of the hyperfocus has faded, and I’ve begun to learn more about myself as Lydia, instead of just as “an autistic person.” As I aluded to earlier, I am a writer, a poet, a blogger, and an author. I’m a speaker. I love pink and purple, hats and shoes and clothes, and thus I’m a bit of a girly girl. Although, I do hate make up. I love Disney World. I like stuffed animals and dolls. I like to swim and walk. I’m trusting and trustworthy, honest, loyal, and yes, pessimistic. I am very interested in my cat, crafts, language, and, finally, autism.
I leave autism at the end, because while it is a part of me and what I’m all about, it is no longer all of me. I am autistic, but I am also hundreds and thousands of other things that are equally as important. I have a shirt that I like to wear to autism events that said, “I Am So Much More Than Autism.” All around the big words are smaller words, descriptive adjectives.
One theme that’s come up for me time in again through my writing is how people with autism really aren’t so different from people in general. Now, tell me, don’t many people seek to define themselves by one thing? For many, it’s by what they do (I’m an engineer). For some it’s by how they look (I always have to be tan and have my nails done). Others, by what they believe (I’m a Democrat). Or by relationships (I’m a mother).
I would argue that this way of defining ourselves by a single attribute is a mistake, on all our parts. I want to make shirts for the whole world that say, “I’m So Much More than ____.” And all around those words, there would be a bunch of adjectives that describe the person. We, both people with autism and people without it, are multifaceted. We owe it to ourselves to recognize our strengths, weaknesses, goals, dreams, and accomplishments…
Recognize. Don’t judge. Celebrate.
Until next time,
Lydia

Lydia Wayman is a 23-year-old Pittsburgher who loves cats, writing, more cats, and more writing. She also has autism. Lydia found her voice through typing and uses her writing ability, combined with a degree in education, to blog, write books, speak, and consult for families. She believes that a girl with a dream and a keyboard can change the world and has set out to do just that.

ABOUT US

QSAC is a New York City and Long Island based nonprofit that supports children and adults with autism, together with their families, in achieving greater independence, realizing their future potential, and contributing to their communities in a meaningful way by offering person-centered services.

QSAC pursues this mission through direct services that provide a supportive and individualized setting for children and adults with autism to improve their communication, socialization, academic, and functional skills.