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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Will autism changes bring harm? via South Bend Tribune

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Will autism changes bring harm?

June 09, 2012|By AMANDA GRAY | South Bend Tribune Staff Writer

Kathi Pierce noticed almost from birth that her son Wesley was having some problems when he had trouble breast-feeding.

It took years of trying various medical exams before Wesley was diagnosed with low-functioning autism.

Now Pierce worries about changes being considered to the definitions and diagnostic criteria of autism and other spectrum disorders.

Those proposed changes could have large ramifications for local families, said Joshua Diehl, the University of Notre Dame psychology professor who eventually told Pierce with certainty that Wesley had autism.

"We've seen it coming since a couple of years back," Diehl said of the changes. "We began to see it as more research came out about the autism spectrum."

The proposed changes from the American Psychiatric Association (APA) are to the various disorders lumped under the "autism" umbrella, most well-known being Asperger's disorder and Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS). The changes would eliminate separate terms and lump all diagnoses under the term "autism spectrum disorder."

The proposed changes would also create a new category, "social communication disorder," which would cover those who don't exactly fit symptoms of autism, but still have trouble communicating and interacting with others.

Some experts believe up to 40 percent of those currently considered autistic will be affected and might lose their diagnoses, which could affect insurance coverage and other services, according to The Associated Press.

Diehl said many of those diagnosed with specific types of autism would lose specialized services and environments they depend on.

"A lot of people embraced the Asperger's diagnosis culture," Diehl said. "They came out of it as bigger than the diagnosis itself. Autism carries a little more of a stigma with it -- Asperger's is a less stigmatizing diagnosis."

Another potential problem with the proposed changes is the damage they could do to the reputation of the psychology field as a whole, according to Diehl.

"In some ways, there is a danger to undermining the psychology profession," he said. "A lot of families have been struggling for years to find a diagnosis."

Understandably, the definitions needed to be upgraded, according to Diehl.

"The idea is that we created the autism spectrum, and we have a catch-all category (PDD-NOS) that wasn't exactly autism," he said. "Too many people were put in there -- it sort of became autism.

"The definition is too vague. The purpose of these updates is to give more defined ideas, make them more easy to use."

These changes arrive as information released from the U.S. government reveals more children than ever -- one in 88 -- are being diagnosed with autism.

Diehl said he would like to talk to parents of children with autism.

"These are good changes," he said. "But we just need to talk about it, and to get a discussion started. The scary thing is that people don't know if they will be affected. I do think there will be some people affected."

Pierce said the changes maker her nervous.

"If insurance decides not to cover (Wesley's care), we would have trouble," she said.

When Wesley struggled with full inclusion in regular classes in public school, Pierce said, she began looking for other options.

He is now educated at the Elkhart office of Behavioral Analysis Center for Autism, which uses Applied Behavior Analysis techniques to teach autistic children how to learn.

BACA Director Nancy Warren said BACA will still provide the same treatment, no matter what a patient's diagnosis or how it changes.

"We base our research on many different types of people," she said. "For us, the label doesn't really matter."

Warren said, despite treatment not changing, it might cause more trouble for parents if a change in diagnosis affects insurance.

"Changing someone's diagnosis label doesn't change their need for service," she said. "This adds a new dimension of challenge for families and society who want to provide services."

The fact that her son has seen success in the program makes the proposed changes that much more scary, Pierce said. Insurance currently pays for all of Wesley's education. If his diagnosis were to change and no longer be labeled "autism," she said she is concerned he might not have this service covered.

"If insurance decides not to cover it, I have always wondered what would happen," she said. "It's a huge concern -- parents cannot afford to cover this out of pocket."

Indiana does have a state mandate that requires insurance companies to cover autism care, according to Pierce.

But different types of insurance have different levels of requirement. If insurance is labeled "fully funded" insurance, or comes from a health plan provided through a group policy, then the coverage is full, according to the Indiana University-based Indiana Resource Center for Autism. But if a company is "self-insured," that is, thecompany essentially acts as the insurer and provides coverage for employees, sometimes mediated by an actual insurance company, the company is not required to cover anything.

Pierce said she was once in an autism group in which only one family out of the 10 in attendance had fully funded insurance.

"So most aren't covered," she said. "There are some families that can't get their children services."

Cathy Pratt, the Indiana Resource Center for Autism's director, said state officials and agencies will continue to work hard to educate parents and families.

"IRCA will be very active in assisting people when the definitions come out," she said.

Pratt said professionals can't really know what the definitions will say until they arrive, which may not be until 2013.

"Right now, people are guessing what the impact will be," she said. "In Indiana, people are thinking that those who are at the upper end of the spectrum will lose services. However, there's the other reality where those people at the upper end have never really received services."

Even with all of the uncertainty in the future, Pierce said, she turns to her son's happiness to find a bit of peace.

"My son is very joyful," she said. "He's a very happy kid. He enjoys the little things in life, like sitting outside watching the trees. He's made me appreciate how beautiful the world is. He's really helped me enjoy the moment more."

http://articles.southbendtribune.com/2012-06-09/news/32146031_1_spectrum-disorders-autism-spectrum-asperger

by on Jun. 10, 2012 at 8:24 PM
Replies (11-20):
LIMom1105
by Silver Member on Jun. 11, 2012 at 10:28 AM

Here's another piece from blogspot about the rationale for the new diagnosis:

http://crackingtheenigma.blogspot.com/2011/06/social-communication-disorder-new.html

Interesting. My son has PDD-NOS, but as I mentioned, he definitely has RSB issues.  I'm wondering if he'll get funneled into Social Communication Disorder and the RSBs will get blamed on Tourette Syndrome (which he also has)?  It's different though, some of his behaviors do not seem to follow Tourette.

kajira
by Emma on Jun. 11, 2012 at 1:11 PM


Quoting LIMom1105:


Quoting kajira:

what exactly is social communication disorder? kids who'd fall into the PPDNOS category would go under that and not qualify for autism?

Then, what exactly would happen for those kids? and they wouldn't consider them autistic-like - what exactly would they be considered?

a "social communication disorder" sounds too close to "social anxiety" and I don't think people would "get" it.

Quoting Austinsmom4544:

Yeah that one was a little sketchy to me also. 

Quoting kajira:

we have, and based on the new DSM write up - I hit every single section and so does my son. However, Social communication disorder doesn't really sound like autism and makes no logical sense.

Quoting Austinsmom4544:

Good article.  I know we have discussed this subject a lot recently.  I don't think the changes will affect my son too much, he receives his ABA from school which is paid for by the district.  I do think it will affect a lot of other people.  I would still like to know how they are going to re-diagnose all of these kids and who is going to be responsible for the costs?  It will be interesting to see how this plays out. 




Here's a link that describes this disorder:

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=489

I am guessing a lot of our kids will get funneled into this, and I fear many will not receive services because iit is not required or not recognized as a true disorder.  I suppose they created it to account for children who meet the social/communication criteria of autism, but not the repetitive movement piece. 

Doesn't really make sense to me.  My son actually has more issues with the repetitive/routine part of the new DSM than the social/communication (though he definitely has issues there too).

So in order to get this one - you'd have to rule out autism - and the definition difference is basically, lack of stimming and repetitive behaviors.... ^.^ wtf?

LIMom1105
by Silver Member on Jun. 11, 2012 at 1:21 PM
Exactly. Instead of PDD NOS, more kids might get this diagnosis and need for sameness might get an OCD label. So 2 disorders instead of one. Does this mean these children never had autism? I think not, though the numbers will surely drop.
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badgermom2012
by on Jun. 11, 2012 at 1:22 PM

Really no.  I think most people w/a PDD-NOS DX will get an ASD DX.   Really it's more like people with very high functioning aspergers that will go into social communication disorder.  That's probably where I'd end up if i went in for eval, which is a big reason why I don't bother with it.  But anyway, despite the hysteria being whooped up most kids are not going to lose their DX.  I spoke to my son's board certified developmental pediatrician about this and he said doctors he talks to have no intention of simply "kicking kids off the spectrum," and most will get ASD DX.  

Quoting kajira:

what exactly is social communication disorder? kids who'd fall into the PPDNOS category would go under that and not qualify for autism?

Then, what exactly would happen for those kids? and they wouldn't consider them autistic-like - what exactly would they be considered?

a "social communication disorder" sounds too close to "social anxiety" and I don't think people would "get" it.

Quoting Austinsmom4544:

Yeah that one was a little sketchy to me also. 

Quoting kajira:

we have, and based on the new DSM write up - I hit every single section and so does my son. However, Social communication disorder doesn't really sound like autism and makes no logical sense.

Quoting Austinsmom4544:

Good article.  I know we have discussed this subject a lot recently.  I don't think the changes will affect my son too much, he receives his ABA from school which is paid for by the district.  I do think it will affect a lot of other people.  I would still like to know how they are going to re-diagnose all of these kids and who is going to be responsible for the costs?  It will be interesting to see how this plays out. 





kajira
by Emma on Jun. 11, 2012 at 1:25 PM

hmmmm..... ^.^


Quoting LIMom1105:

Exactly. Instead of PDD NOS, more kids might get this diagnosis and need for sameness might get an OCD label. So 2 disorders instead of one. Does this mean these children never had autism? I think not, though the numbers will surely drop.


kajira
by Emma on Jun. 11, 2012 at 1:27 PM


Quoting LIMom1105:

Exactly. Instead of PDD NOS, more kids might get this diagnosis and need for sameness might get an OCD label. So 2 disorders instead of one. Does this mean these children never had autism? I think not, though the numbers will surely drop.

but OCD is pretty much a part of autism - there's very few kids who would be OCD and not be autistic but have all the other behaviors... that makes no sense.



badgermom2012
by on Jun. 11, 2012 at 1:33 PM

A lot of people have OCD and not autism.  Also there is a difference between nervous ticks and the repetitive and self-stimulatory behaviors associated with autism.  It's a matter of degree plus the absence of other more "normal" behaviors.    

Quoting kajira:


Quoting LIMom1105:

Exactly. Instead of PDD NOS, more kids might get this diagnosis and need for sameness might get an OCD label. So 2 disorders instead of one. Does this mean these children never had autism? I think not, though the numbers will surely drop.

but OCD is pretty much a part of autism - there's very few kids who would be OCD and not be autistic but have all the other behaviors... that makes no sense.




kajira
by Emma on Jun. 11, 2012 at 1:37 PM
1 mom liked this

well that's what I was trying to say - that OCD isn't the same thing as the OCD that comes with autism...

Why are they trying to just seperate all the behaviors out into different labels?

so instead of saiyng a kid has autism they'll say 

ADD, OCD, Social communication disorder, ODD, Tourettes/Tics - Siezure like behavior etc etc.

uhm. or... they could just say the kid's autistic.

Quoting badgermom2012:

A lot of people have OCD and not autism.  Also there is a difference between nervous ticks and the repetitive and self-stimulatory behaviors associated with autism.  It's a matter of degree plus the absence of other more "normal" behaviors.    

Quoting kajira:


Quoting LIMom1105:

Exactly. Instead of PDD NOS, more kids might get this diagnosis and need for sameness might get an OCD label. So 2 disorders instead of one. Does this mean these children never had autism? I think not, though the numbers will surely drop.

but OCD is pretty much a part of autism - there's very few kids who would be OCD and not be autistic but have all the other behaviors... that makes no sense.





LIMom1105
by Silver Member on Jun. 11, 2012 at 2:34 PM

I'm just guessing about what could happen, and yes, OCD is different than autism. Though many people with autism have OCD behaviors also.

My thought is that it could be easy to assign the Social Communication Disorder diagnosis. Then if there are some repetitive/stereotypic behaviors, a different diagnosis could be assigned to account for them. Maybe this is not how it will play out at all and I'm paranoid, but I could see this happening. Many children receive an ADHD diagnosis as children when young, and an autism diagnosis later.  Do they really have both disorders? Maybe, but it's up for debate to me.

I'm not sure who would qualify for the social communication disorder diagnosis who is not autistic also, but there may be people.  It does seem to me that it makes more sense for all concerned to apply an autism diagnosis rather than multiple diagnoses for the behaviors that are typically seen with autism.

kajira
by Emma on Jun. 11, 2012 at 2:41 PM

I know a lot of people who are diagnosed with aspergers who don't stim, don't have OCD behaviors, don't do all the other stuff, and are just socially akward and don't easily understand social skills - and often don't even WANT too or try to put effort into it and happily offend people and use their asperger label as an excuse to be rude.....

So, I could see how they'd fall under the social communication label - instead of being autistic.. 

Quoting LIMom1105:

I'm just guessing about what could happen, and yes, OCD is different than autism. Though many people with autism have OCD behaviors also.

My thought is that it could be easy to assign the Social Communication Disorder diagnosis. Then if there are some repetitive/stereotypic behaviors, a different diagnosis could be assigned to account for them. Maybe this is not how it will play out at all and I'm paranoid, but I could see this happening. Many children receive an ADHD diagnosis as children when young, and an autism diagnosis later.  Do they really have both disorders? Maybe, but it's up for debate to me.

I'm not sure who would qualify for the social communication disorder diagnosis who is not autistic also, but there may be people.  It does seem to me that it makes more sense for all concerned to apply an autism diagnosis rather than multiple diagnoses for the behaviors that are typically seen with autism.


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