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Redefining autism could leave patients without care

Posted January 20, 2012

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— Changing the definition of autism could have unintended consequences for people in North Carolina and across the nation living with the disorder.

The New York Times reported this week that a new definition proposed by the American Psychiatric Association would narrow the criteria for the disorder, and potentially re-diagnose tens of thousands of people with related disorders, such as Asperger's Syndrome, in which patients have some of the same social struggles but don't meet the qualifications to be fully diagnosed with autism.

The changes are still in the drafting stage and could be nearly two years away, but there are already concerns.

Tracey Sheriff, chief executive officer of the Autism Society of Carolina, said Friday that thousands of people could potentially lose state-funded health, education and social services.

"We want people to live within their communities, in their homes, near their families, just like a life you and I have," he said.

Up to an estimated 60,000 people in the state are diagnosed with autism and autism-related disorders, according to the society. Removing that support, Sheriff said, could force many of those in need into state facilities.

Redefining autism could leave patients without care Redefining autism could leave patients without care

"Regardless of what we call it, they have needs, and their needs have to be met somehow," said Nancy LaCross, whose 19-year-old son, Eric, requires in-home care.

Eric was diagnosed on the autism spectrum at age 10 with "pervasive developmental disorder, not otherwise specified" – also known as PDD-NOS.

"He wants to have friends desperately. He doesn't always know how to interact appropriately," she said.

Eric qualifies for state-funded services that help him become more independent and help him thrive socially and behaviorally in the community, at a potential job, in school or at home.

LaCross says that if he were to lose the critical service, she would not be able to work outside the home.

"Having a kid with a disability, we have a lot of unknowns already in life," she said. "Then, when something like this happens, it just makes you nervous."

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  • freedom monkey Jan 26, 2012

    Prevent autism by stop taking vaccines, HFCS, GMO, hormone injected meat, food colorings, and lower carb (sugar) intake. In many cases, it can be reversed through nutrition and vitamin supplementation.

  • Pseudonym Jan 25, 2012

    akgibson20,

    Start playing around with changing your grandson's diet. Try eliminating things like gluten and artificial colors, especially red 40.

    I have a child that has a reaction to red 40 that is just terrible: mood swings, uncontrollable crying, rages, and inability to reason. Google red 40 and you will see reactions like this EVERYWHERE. There's a movement to ban it.

  • readme Jan 25, 2012

    You can still get care, you just have to pay for it. Also, you can explore non-profits to help. Also, much of the care can be provided by family members with some reasearch. Please don't slam me for insensitivity; I have a very close family member with Asperger's. I just don't always expect the State to solve my problems.

  • babbleon Jan 24, 2012

    "That's the key thing: if something interferes with a productive life" babbleon

    [I have been diagnosed with Asperberger's] I seem to have no problem living a productive life. dcatz

    I want to make sure one thing is clear: I do not think that a diagnosis on the autism spectrum automatically means you will not have a productive life. I think that for *some* people, it may cause problems that interfere.

    Example: I have a Sensory Processing Disorder that means I don't like massages or being touched much. It doesn't interfere with my life, I won't seek treatment. My son's version was that he couldn't stand to hold my hand, including during crossing the street. Improving his tolerance to touch was one thing we worked on because it was important to his safety. Once we got to the point where he would hold hands, I've just let nature take it's course.

    If it's not a problem in your life, there's no need to fix it, but if it is a problem, it's nice to have help.

  • babbleon Jan 24, 2012

    I have not been to see a psychiatrist in over 10 years and I seem to have no problem living a productive life... dcatz

    Ok, your neural diversity does not interfere with your life. But you are not everyone. Some on the autistic spectrum have anxiety or difficulty concentrating, both of which can be helped with non-drug therapies. Also, some may want to communicate differently and be unable to do so without guidance.

    Intervention does not always mean that people are driven towards being neurotypical. In my son's case, it means some things that I learned on my own are being made explicit for him, and that he's being given some extra tutoring on areas that are hard for him. It's been very good for him, and I hope any other child whose parents want this additional education can get it. Which they might not with a redefining.

  • akgibson20 Jan 24, 2012

    Wow, reading these comments brings tears to my eyes. My grandson was diagnosed as ADHD over a year ago and after exhausting all behavioral modification methods he was put on ADHD meds. We have been through numerous medications which work for about 2 weeks then stop. I watched him closely and there were things about him that just seemed to me to scream that there was something else going on. We spoke with his Dr. who agreed that it appears to be Asperger's. He is extremely bright for a 6 year old but he lacks the ability to interact with kids his own age, will not make eye contact, and sometimes just "doesn't get it" among other things. It worries me that the meds that he is being given may be doing more harm to his body than anything. He has an appointment with a psychiatrist this week and we are hoping to get the help he and we need to teach him how to cope without simply being drugged. "Geeks and nerds" unite! We are the inventors and creators of the technology of the world.

  • Pseudonym Jan 24, 2012

    Quote from babbleon: "he's on track to be mainstreamed by kindergarten."

    To quote Pink Floyd, another brick in the wall.

  • krazikatt2 Jan 23, 2012

    Dcatz...I wish you and my son could speak as you SOUND JUST like him! Sarcasm is completely lost on him and he is gesture blind and beyond literal...I have learned how to speak with him so I do not offend him and I have learned to interpret his nuances...It is a pleasure to hear another speak about it this way as he originally thought of the diagnosis as a terminal sentence...I am going to share your comments with him...

  • krazikatt2 Jan 23, 2012

    @dcatz - My son, age 19, was diagnosed with Asperger's Syndrome as well. Like you, he is working (actually two) full time jobs, both within the service industries. He, however, is not great on the friend front and tends to only have one or two at any given time. Not that having only one friend is an issue...it certainly is not for him. He is really happy and loves his life. He thrives at work and at the gym. He originally was diagnosed with ADD (not hyper) and I took him RIGHT off that medication. He hasn't seen any professionals for assistance since he was 12 and is doing JUST fine. Some kids are not as lucky as you and my son as they have more severe forms of AS. (I would like to think that your parents and myself had a great deal to do with our kids prosperity *wink*)

    I agree that it is so easy to just label someone instead of accepting differences for what they are. I am a total nerd and geek. I wear those labels with pride.

  • dcatz Jan 23, 2012

    I assure you I was not "misdiagnosed" (Although since AS is not a disease, one cannot diagnose it). I fit most of the criteria.

    However, merely being an aspie does not mean that you cannot live a "productive life". I resent the implication of this article that we require government assistance and that we are misfits who are incapable of living a life on our own.

    Social skills are much more difficult for me. I am gesture blind. I am literal. The fact that I am socially awkward doesn't suddenly mean that it is a disease to be cured. People have different personalities. Some people are introverts, some people are extraverts. I am the former. Some people are just naturally shy. I did not meet my (NT) fiancee because someone decided to introduce us or give me "help". I met her sua sponte, I asked her out on the first date, sua sponte, and I proposed to her, sua sponte.

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