Void Sticker

Saturday, December 23, 2006

What is Autism -- Part 2


A diagnosis of autism does not rely on social irregularities alone. Autism is called a pervasive developmental disorder, and for a very good reason. Simply put, autism affects every aspect of an individual's life and experience set. One of the ways this is most apparent is in communication.

According to the DSM-IV (see Part 1 for link), the second set of criteria for a diagnosis of autism is "qualitative impairments in communication as manifested by at least one of the following:"

(a) delay in, or total lack of, the development of spoken language (not
accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

Once again, I'm going to break this down:

"(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)"

Two of my three autistic children are primarily non-verbal. What this means is that they do not speak communicatively on a regular basis; when they do it is usually with a single word, or an indicative portion of a single word. For instance, Alex can say "Mama," however usually when he's saying "Mama" it is a reflexive action that has no apparent connection to me, his mother. However, upon rare occasion, he will be communicating with me, acknowledging my presence, my attention, my love and our mutual connection. Last night was such a time. Alex was sick yesterday and didn't recover at all that day. He felt sick when he woke up; he still felt when he went to bed. (He's fine today.) Last time when I tucked him and gave him extra snuggles, he said, "Mama" repeatedly. Usually he says this in a sort of "monotone." It's not truly a monotone, but it's a repetitive inflection and pitch that indicates he's doing some vocal stimming. This time it was not said with the same pitch and inflection, but with hugs, eye contact and vocal variety. He was acknowledging that I was his Mama, and that he felt better with me there.

Imagine for a moment what it would be like to be full of feelings and thoughts, but unable to express them verbally. For those of us who take verbalizing our thoughts and feelings for granted, it's difficult to imagine. We can imagine ourselves in a foreign country where we don't speak the language, but that still doesn't properly correlate to autism. You see, were we in a foreign country, we'd mime and gesture our way to understanding. It wouldn't be easy, and we'd get frustrated, but if the other person was patient and willing, we could communicate. With autism, this ability is often absent as well.

It's not the words themselves that are so difficult. It's often the concept of communication itself that is baffling. In my previous post I described to individuals looking at different pieces of art, and how an autistic individual would find it difficult to redirect themselves to the piece discussed by the other person. Now, imagine this was your normal situation. People are talking, making sounds that are symbolic of things, but symbolic of what? If you don't know how to make that shared connection of stimulus, how are you going to make things and words, or things and gestures, or even things and pictures connect in your mind. If you're looking at a ball and the other person is labeling a table, "Table. This is a table," and you don't notice and attune yourself to the item being labeled, you may associate the ball with the word table. With such inconsistencies being a constant in your world, then labels for items, words themselves, are not going to make much sense. It's going to be very difficult and frustrating to use words, or understand words.

Now, to explain why autistic individuals find it so difficult to use miming or gestures to compensation for their lack of a usable verbal repertoire, let's think about Charades. Anyone who's ever played the game knows that it is more difficult than simply speaking. A good game of Charades relies on several key components. First, the person miming needs to understand the subject matter. Try to imagine yourself communicating magnesium in the form of Charades. A chemist or biologist might be able to do it successfully, but most of us just don't know enough properties of magnesium to find a means to use gestures to communicate the word. For myself, I don't even know where it is on the Periodic Table of Elements without looking it up. Now, the second component is for your team members, those who are guessing the word, to have a similar understanding of the word. The third is for the gesticulator to effectively communicate this shared meaning. Without any of those key factors shared meaning, i.e. effective communication, is going to elude the team.

Since shared meaning already eludes individuals with autism, miming is out. If you don't understand what "bye-bye" is, the leaving of another individual or yourself, and you don't understand that waving indicates "bye-bye," and you don't understand that it is a socially appropriate behavior to wish a farewell with the wave of the hand, then you're not going to be able to learn the gesture in context even though you can physically wave your hand.

"(b) in individuals with adequate speech, marked impairment in ability to initiate or sustain a conversation with others"

While my oldest child with autism is verbal, he does speak and he does speak fairly well (though he didn't when he was first diagnosed), he still has a lot of difficulty holding a conversation. For Willy, it isn't a lack of words that's the problem, it's the lack of context. Again, we return to shared meaning. While he understands the meaning of a great deal of words, he doesn't understand that everyone doesn't share the context that's within his own mind. Obviously, this isn't limited to individuals with autism by any means. I'm sure we can all think of a few examples, techno-babble and colloquialisms being frequent examples of miscommunication in our culture. However, most of us can correct these problems when the problem is brought to our attention.

Willy likes YouTube. He especially likes watching episodes of a cartoon called Monster Rancher on YouTube. One of the main characters in this cartoon is Holly. Willy loves Holly. According to Willy, he's going to marry her, and she's his sister, and she shares his birthday. Holly is very much akin to an imaginary friend. However, as much as Willy talks about Holly, he never mentions she's on Monster Rancher. When Willy started talking about Holly, I assumed she was a child from his class. I assume that he'd befriended a girl from school, and that they played together. His therapists thought the same thing. This went on for weeks. Until finally, Mark (my husband) heard me and Willy talking about Holly, and told me where she's from...and then the things Willy was saying made more sense. (Not the part about her being his sister, though.) But, despite the obvious miscommunication for someone who understood the context, it never occurred to Willy to share his context with those of us who didn't know.

This is frequent in Willy's case. And that context can be very elusive in and of itself. Willy assumes we share his context, or that shared context is unnecessary, or something to that affect, when in fact there's no shared context and effective communication is not happening.

Now, to clarify something, Asperger Syndrome is a pervasive developmental disorder that is on the Autistic Spectrum, but doesn't carry the same inhibited communication that Willy used to have, and that Alex and Ben still do. They develop the ability to communicate, but much like Willy is now, understanding the social complexities and the shared context of holding a conversation often eludes them without specialized help or painful struggles to develop the abilities on their own.

"(c) stereotyped and repetitive use of language or idiosyncratic language"

This probably refers to something called echolalia. It is the use of words without the proper meaning attached to it. When Alex does his vocal stimming, he is occasionally exhibiting echolalia. However, Willy did this much more frequently. We would say something, and Willy would repeat it back to us, several times, without any apparent understanding. It also refers to generalizing words that are not generalizations. Ben, for example, calls all his stuffed animals, and even a few trains, Winnie the Pooh. He can say Winnie the Pooh. He likes Winnie the Pooh. And he says it of his dinosaur, Thomas the Train, and a myriad of other toys, stuffed or not.

"(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level"

I'm sorry, I shouldn't, but I tend to scoff at this one. There are two reasons for this: First, when Willy was diagnosed with autism his doctor told us, quite frankly, that he'd never speak or practice pretend play (i.e., make-believe play), right before he told us our son wasn't worth our efforts and that he should be institutionalized. Now Willy is telling us stories about all the adventures he's had with his imaginary cartoon sister, Holly. And, whether it's a good thing or not, I can't resist the pleasure of thumbing my nose at this doctor, though I tend to leave him unidentified.

The second reason is more difficult to explain. 1) I see it as misplaced. 2) It's difficult to assess. 3) I don't think it's altogether true. Individuals with autism who are unable to communicate effectively are "in their own world." Unless you make substantial efforts, you don't know what's going on in that world. Even if you make substantial efforts, you have to make the right efforts, and you still don't always know what's going on in their world. Who are we to say they're not playing make-believe? We don't know! Just because we can't recognize it as such, doesn't mean it's not happening. It's the whole shared context thing again. We don't share their context, but that does NOT invalidate their context.

Now, I'll step it down a notch or two and explain a little about what this means. Neurotypical children, i.e. "normal" children, play in certain, predictable, recognizable ways. Little girls and little boys play house, they play war, they make dinosaurs roar and they build bridges out of blocks and have horses cross over the tops of them. All these are examples of "spontaneous make-believe play or social imitative play."

Autistic children often don't do these activities without being taught how. Yet, they do play, even if they don't play in neurotypical ways. Alex likes looking at objects. He holds them by his face and twists them around, looking at it from a variety of angles. Is this play? The psychologists tell me, "No, it's not." For some reason I don't quite understand, it doesn't count in their opinions. However, Alex smiles, laughs, giggles and gets excited when he does this. He sees something we don't. We don't know what that is. We don't understand. But that doesn't mean we can say for sure that he's not using his imagination. We can't even say for sure that he's not imitating something we've done or do on a consistent basis. We just don't know.

While Alex's therapists and our family do work hard to teach Alex "normal" ways of play, we do NOT impede him from these activities he obviously enjoys, irregardless of our own lack of understanding. Alex loves to do this. He enjoys doing this. Who are we to take that away from him?

Now, at the beginning of this post, I said, "One of the ways this is most apparent is in communication." Autism is a pervasive disorder. It affects all areas of life. And, communication, or the lack thereof, is one of the most difficult challenges to overcome. You can want to be social. You can try to be social. However, if you cannot communicate, the barriers to socialization are virtually insurmountable. Ah, but I've got a secret...

Autistic individuals communicate regularly. They communicate in a variety of ways. They communicate through words, sounds, and vocal variety. They communicate through gestures and miming. They communicate through body language and actions. They communicate just as much, or nearly so, as the rest of us. Does it seem like I'm contradicting myself?

It shouldn't. I left the keys to these sensational (if you're typically-minded) statements throughout my post. You see, it's NOT that autistic individuals don't communicate. The autistics individuals who do communicate prove that. The thing is...autistic individuals do not communicate within our shared context!

Alex, non-verbal child that he is, communicates all the time! It's up to those who are around him to decipher his communicative messages to share his context. It's up to us to piece together the message and translate it to ourselves, and then to find a way to translate the response back into his context. It's hard work. It's frustrating. It often fails. But, it's worth it. Those precious moments of shared context are treasures of unimaginable worth and I cherish them. Some people find this to be more difficult than others, and some people, sadly, refuse to even try. However, this insistence that the autistic individual come into our world, our context to communicate basically slams the doors of communication in his/her face. Communication is a two-way street, and sometimes the more "able" people need to get over themselves enough to make the extra effort to make it happen.

What is Autism: Part 3, Behavioral Patterns, will be posted tomorrow.


At 12/23/2006 11:28 AM, Blogger mcewen said...

You get so used to the way your children 'are' that you [me/one] fail to note some of the obvious holes - in my case it was 'hand leading' where a small child who has no speech 'leads' the parent to the 'item of interest'. Mine never did that, and I didn't even notice - hindsight is great.
Seasonal greetings

At 12/23/2006 11:47 AM, Blogger Stephanie said...

It took Alex six years to develop that skill, but now he's got it down. He still won't point to anything, but he'll take you to the location of whatever it is that he wants, such as the cabinet for food or the locked closet for special toys. But, it can be a battle to get that recognized as "communication," especially since the locations have a variety of items within them.

At 12/24/2006 5:30 PM, Blogger David Schantz said...

I have an old friend that went blind when he was five years old. Just to see what life might be like for him I covered my eyes and tried doing everyday simple things. Or they would be for people that can see. It was interesting/difficult. I cannot imagine what it would be like to go through life unable to understand or to be understood. My hat is off to the parents of Autistic children that choose to work with them, and learn from them.

I'd like to wish Stephanie, her family and readers a Very Merry Christmas.

God Bless America, God Save The Republic

At 12/25/2006 6:34 PM, Blogger Praguetwin said...

My hat is off to you Stephanie. It sounds like really hard work, but I see you get satisfaction out of it.

Is is common for one person to have several autistic children? I know this is sensitive, and I thought long and hard about asking, but of course in the end I always favor openess becuase that is what blogging is all about, so i had to ask. I hope you don't mind.

Merry Christmas to you and your family.

At 12/26/2006 10:07 AM, Blogger Stephanie said...


I too have "practiced" being blind and it's definitely interesting/difficult. A group of occupational therapists (therapists who help people develop/re-develop fine motor skills) have done something similar with aspects of autism. It doesn't help get the whole picture of what it is to be autistic, but it does help. Part of autism is Sensory Integration Disorder, which I'll cover in a latter post, and the OTs can mimick this with special devices that disorient your sensory perceptions. I've never done it, but it's supposed to be an enlightening/difficult experience for those who've been studying sensory integration disorder.

At 12/26/2006 10:24 AM, Blogger Stephanie said...


"...so i had to ask. I hope you don't mind."

Ask. Always ask! Worst is I won't know the answer, or an answer to your question. Part of the reason I'm putting my family autism on display is to inform people, and it's not nearly as informative if you're afraid to ask about those aspects that intrigue you. So, always ask.

"Is is common for one person to have several autistic children?"

There's no clear-cut, yes/no answer to that. I know mine is not the only such family by far. I've met several families that have more than one member who is autistic. I've also met several families who have only one autistic member. But, I do not know of any statistics (at least, statistics with an actual source) that tries to determine what the ratio is between the two.

According to many of the doctors I've interacted with, my familial situation is bizarre, unheard of, extraordinary. According to the good doctors, i.e. those who actually seem to know what they're talking about, we are not any sort of exception...there are others.

In fact, one research group we've been offered to join insists that there must be more than one member of our family who is autistic, thus there must be enough of us to consist of a research group. (This research group is searching for a cure, so I declined.)

So, finally, in answer to your question I would have to say that, from my experience, we are neither common nor rare; however, from a scientific, statistical perspective, the data has not been gathered. We may be more rare than I think, and it's just more likely for us to be out there and active when lightning strikes twice or thrice. It's difficult to be sure, which is why I urge more pure research to be done. Less assuming objectives, i.e. cure, and more research for the sake of understanding.

I hope this helps.

At 12/26/2006 8:38 PM, Blogger David Schantz said...

"(This research group is searching for a cure, so I declined.)" To some it might seem strange that you would decline. I'm happy to hear you turned down the offer. At one time I'd planned to marry a lady (Peggy, May She Rest In Peace)that had ALS. We went from cost to cost looking for the answer/a cure. One day she told me no more. Some of the test were causing pain or illness. She said see was not only tired of being a Lab Rat, she was just tired and wanted to go home. Thank God she could communicate.

God Bless America, God Save The Republic.

At 12/27/2006 6:27 AM, Blogger Praguetwin said...

Thanks Stephanie,

I should have known you would be more than happy to answer.

Very interesting stuff, I must say. I've always thought of Autism as an affliction....until now.

Thanks again.

At 12/29/2006 9:17 PM, Blogger Stephanie said...


"Thank God she could communicate."

I'm glad she could and I hope she was able to stay at home until the end. It's not easy for some to simply endure what cannot be defeated, but sometimes the attempt to defeat something reduces what it is we're trying to retain.

For me, the thing has been hearing autistics talk about how they cannot imagine not being autistic, how they wouldn't want to be autistic, how they'd be entirely different people with different personalities if they were "cured." It makes me think about how people try to change others, without understanding that the "other" doesn't need to be changed to be valid. I don't want that for my boys. I want them to know that they are wonderful just they way that they are, and that for me "better" is what they want it to be.

On a different note, a family friend is currently suffering from an inoperable brain tumor. He's been sick in the hospital for other things, and now is going through radiation treatment. The hospital says he's ready to go home; sadly, the family is fighting this, trying to keep him there. Knowing how they treat other members of their family, it's difficult for me to assume they have his best interests at heart. And it's so sad to watch as they decide, seemingly for him, that if he can't stay in the hospital he has to go to a nursing home. And his able to communicate, but sometimes that just doesn't seem to matter if those who are supposed to love the individual do not listen.

At 12/29/2006 9:18 PM, Blogger Stephanie said...


"I've always thought of Autism as an affliction....until now."

Thank you! That's one of the best compliments I've ever gotten! I'm glad my words are making a difference.


Post a Comment

Links to this post:

Create a Link

<< Home