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Can someone help me understand autism?

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 I am the first to admit, I don't understand autism. What made you seek a diagnosis for yourself or your child/ren? I know I can look up a million sources and articles on the internet, I would rather ask real women who have it or have children who have it. Please can someone educate me (and maybe others)?

ETA- I really want to thank you all for sharing your stories, struggles and triumphs.

by on Apr. 17, 2013 at 12:00 PM
Replies (71-77):
TheLadyAmalthea
by Bronze Member on Apr. 18, 2013 at 12:15 AM

My son was 2 and wasn't talking, or even trying to talk. He had odd behaviors, such as covering his ears and screaming when he heard noises he didn't like. He didn't want anything to do with me or with other children. It was pretty obvious. He is 5 now, can say a few words, and uses a communication device to communicate. 

tscritch
by Silver Member on Apr. 18, 2013 at 1:16 AM

 What kind of communication device, if you don't mind me asking?

Quoting TheLadyAmalthea:

My son was 2 and wasn't talking, or even trying to talk. He had odd behaviors, such as covering his ears and screaming when he heard noises he didn't like. He didn't want anything to do with me or with other children. It was pretty obvious. He is 5 now, can say a few words, and uses a communication device to communicate. 

 

TheLadyAmalthea
by Bronze Member on Apr. 18, 2013 at 11:22 AM

We have an ipad that has a communication app on it, but that was when we were waiting to get an actual device. We finally got approved to get the Vantage Lite. It's an $8,000 device, not exactly something you can buy off a paycheck! It took forever to go through our insurance to get it coverd. It took 8 months to finally get everyone involved happy enough to cover it for us. We got lucky. There are many kids out there that need a communication device and their insurance won't cover it. Most average people can't afford $8,000. And that's just the simple device. They have devices that go up past $10,000. I think every kid deserves a voice, and it's a bit ridiculous that these devices are so expensive!

Quoting tscritch:

 What kind of communication device, if you don't mind me asking?

Quoting TheLadyAmalthea:

My son was 2 and wasn't talking, or even trying to talk. He had odd behaviors, such as covering his ears and screaming when he heard noises he didn't like. He didn't want anything to do with me or with other children. It was pretty obvious. He is 5 now, can say a few words, and uses a communication device to communicate. 

 


tscritch
by Silver Member on Apr. 18, 2013 at 11:37 AM

 Wow! That is crazy!!! Does he type into it and it turns it to spoken words?

Quoting TheLadyAmalthea:

We have an ipad that has a communication app on it, but that was when we were waiting to get an actual device. We finally got approved to get the Vantage Lite. It's an $8,000 device, not exactly something you can buy off a paycheck! It took forever to go through our insurance to get it coverd. It took 8 months to finally get everyone involved happy enough to cover it for us. We got lucky. There are many kids out there that need a communication device and their insurance won't cover it. Most average people can't afford $8,000. And that's just the simple device. They have devices that go up past $10,000. I think every kid deserves a voice, and it's a bit ridiculous that these devices are so expensive!

Quoting tscritch:

 What kind of communication device, if you don't mind me asking?

Quoting TheLadyAmalthea:

My son was 2 and wasn't talking, or even trying to talk. He had odd behaviors, such as covering his ears and screaming when he heard noises he didn't like. He didn't want anything to do with me or with other children. It was pretty obvious. He is 5 now, can say a few words, and uses a communication device to communicate. 

 


 

Clairwil
by Ruby Member on Apr. 20, 2013 at 6:30 AM
Quoting tscritch:

Can someone help me understand autism?

A groundbreaking study suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy—rather they feel others’ emotions too intensely to cope.

(source)

People with Asperger’s syndrome, a high functioning form of autism, are often stereotyped as distant loners or robotic geeks. But what if what looks like coldness to the outside world is in fact a response to being overwhelmed by emotion—an excess of empathy, not a lack of it?

This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with new thinking about the nature of autism called the “intense world” theory. As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an hypersensitivity to experience, which includes an overwhelming fear response.

“I can walk into a room and feel what everyone is feeling. The problem is that it all comes in faster than I can process it.”

“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.” Virtually all people with ASD report various types of oversensitivity and intense fear. The Markrams argue that social difficulties of those with ASDs stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10. If hearing your parents’ voices while sitting in your crib felt like listening to Lou Reed’s Metal Machine Music on acid, you, too, might prefer to curl in a corner and rock.

But of course, this sort of withdrawal and self-soothing behavior—repetitive movements, echoing words or actions and failing to make eye contact—interferes with normal social development. Without the experience other kids get through ordinary social interactions, children on the spectrum never learn to understand subtle signals.

“I think that it’s a stereotype or a misconception that folks on spectrum lack empathy,” he says. Schwarz notes that autism is not a unitary condition—“if you’ve seen one Aspie, you’ve seen one Aspie,” he says, using the colloquial term. But he adds, “I think most people with ASD feel emotional empathy and care about the welfare of others very deeply.”

Clairwil
by Ruby Member on Apr. 20, 2013 at 6:31 AM

Also:

(source)

People with high-functioning autism have difficulty understanding others' intentions, new research shows.

This lack of understanding tends to make adults with autism, even those with high IQs, judge others more harshly, which may pose problems in forming and maintaining relationships, the study found.

Researchers from Massachusetts Institute of Technology asked 13 people with high-functioning autism, such as Asperger's syndrome, and a mean IQ of 120, as well as 13 neurologically normal adults to answer questions about moral quandaries in which a person meant well but ended up doing harm.

In one example, someone intended to put sugar in a friend's coffee, but it turned out to be poison. In another, two friends are kayaking in jellyfish-infested ocean waters. One friend had just read that the jellyfish were harmless and suggested they go for a swim. But then the other was stung and died.

People with autism came down harder on the person whose actions caused the harm, while those without autism put more emphasis on the person's good intentions.

"Adults with an autism spectrum disorder were less likely to take that intention information into account than a neurotypical person. They were more likely to make a harsh judgment of that person and less likely to forgive," said study co-author Liane Young, a postdoctoral associate at MIT.

The findings are reported in the Jan. 31 online issue of the Proceedings of the National Academy of Sciences.

Every day we have to make judgments about other's intentions, whether deciding how upset to get about an insensitive remark or a co-worker's slip-up.

"It's really important to be able to think about people's thoughts, beliefs and intentions, not only to make moral judgments but to figure out what they are doing and why," Young said. "To really understand people, it's important to know what they are thinking and intending."

The ability to discern other's intentions, desires and beliefs is called "theory of mind" and typically develops at about age 4 or 5, according to the study.

In a classic example, a child is shown two dolls, "Sally" and "Anne." The experimenter puts on a skit in which Sally puts a marble in a basket. While Sally isn't looking, Anne moves the marble from the basket to a box. The experimenter asks the child where Sally will look for the marble when she returns.

Knowing that Sally will look in the basket requires understanding that others have beliefs that may differ from our own.

Previous studies have shown that children with autism develop this ability later than other children, if ever, Young said.

But what's been difficult from a research perspective is that adults with high-functioning autism develop means of compensating for their social difficulties and would almost certainly be able to figure out the question involving the dolls, said Clara Lajonchere, vice president of clinical programs at Autism Speaks.

Researchers have had more difficulty assessing the more complex, nuanced skills required in making social judgments, something this study does well, Lajonchere said.

"The individuals with ASD [autism spectrum disorder] weighted outcome more highly than intention," Lajonchere said. "The ASD group did not reliably judge accidental versus intentional harm."

Yet, in many ways, people with and without autism were fairly similar. Given other scenarios, such as having bad intentions and causing harm, or having bad intentions but inadvertently having a good outcome, both group's answers were similar.

And there isn't necessarily a right or wrong answer to how readily we should forgive or give another the benefit of the doubt when they've caused harm to someone else. Even those without autism vary greatly in this capacity, Young said.

Clairwil
by Ruby Member on Apr. 20, 2013 at 6:33 AM

It seems plausible that people with autism do have strong empathy (in the sense of caring about the emotions of others, once they know what those emptions are).  Where they perform badly is in identifying those emotions from social cues - reasoning backwards from what the people's motivations might have been, and (from the comments in the article) the stumbling block there seems to be that their own motivations are different (eg attitude towards black-and-white judgements, and not lying or excusing their own actions on the grounds of ignorance). 

I thought especially telling the comment:
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The findings in this study resonate with me as well. I have three children on the autism spectrum, and all three of them tend to have harsh, black-or-white attitudes about other folks' actions and intentions. What's more, they have a very hard time seeing how other people might respond to their words and actions. "Theory of mind" is a good way to put it.

But one other thing I'm seeing is that they are just as hard on themselves as they are on other people. My oldest son showers himself with negativity whenever he is corrected in even the slightest, kindest way. He is convinced both that he is hopelessly stupid and that I hate him whenever I try to help him correct his homework. And whenever he gets frustrated at school, he will come home telling us that he is just plain "worthless." It's heartbreaking.


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