Aspergers...the diagnosis going away?

Discussion in 'General Parenting' started by MidwestMom, May 30, 2011.

  1. SomewhereOutThere

    SomewhereOutThere Well-Known Member

  2. keista

    keista New Member

    I heard mention of this before. Like said in the article Asperger's is a god "entryway" into the acceptance of autism - making it easier for ppl and parents to deal with a diagnosis. Schools and insurance, and SSI and others in my opinion have jsut recently begun catching up to the term Asperger's. Son's IEP only a few years ago had it put on. Before that it was "other Health impaired" Because while Autism was a disability, Asperger's was not?????????

    Ultimately A rose by any other name smells as sweet.

    I'm already called upon by friends and family and the school, to help parents transition into an Asperger's diagnosis - I help them see the wondrous magical gifts and thinking their child possess and that IEPs can be a GOOD thing. Think it'll just be a bit more difficult when it's all called AUTISM. Which really is funny since once over the hump of accepting diagnosis, it's just so much easier to tell ppl Autism - if they are confused then you go into details.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Well, in my opinion, people have a wrong view of Aspergers. It's only a selected few who are gifted and do fine in life. Most struggle and need help (a lot). I'd rather my kid get the help he needs than get called an Aspie. At any rate, I found it interesting. This seems to be coming up more and more. And, heck, we can still call our k ids Aspies :) Who will stop us?
  4. keista

    keista New Member

    That's why I'm kind of on the fence about it. I'm guily of getting stuck in that "wrong view" because even Asperger's has a range and my son is the mild end. In reality his only evaluations have been through the school, and he always ends up as "highly likely Asperger's" and I think his IQ scores are low because they've only given him verbal tests which he hates and tries to avoid participation. (yea, working on getting a private evaluation done)

    I also KNOW that I would have had a much more difficult time accepting that he indeed had an Autism Spectrum Disorders (ASD) (evaluations firmly place him on the spectrum) If I didn't have the "Asperger's, a form of Autism" explanation.

    I also think that the fact this "milder" form of Autism with a different name was put in DSM V has created a better awareness, and increased diagnosis's in cases that previously would have been overlooked.

    It's a double edged sword.
    I TOTALLY agree.

    I did like the plan of adding lists of common co-morbid conditions along with diagnosis criteria.
  5. InsaneCdn

    InsaneCdn Well-Known Member

    Sometimes I think there is a whole industry out there that does nothing except play with labels...

    For example - ADHD. First there was ADHD. Then there was ADD, with sub-types (hyperactive being one of them). For some period of time, they were treated as totally separate diagnosis. And the words that make up the label, don't really make sense anyway (its not really a deficit of attention, its difficulty managing that attention). So, every time we do the next round of updated testing, the diagnosis changes - but the kid, and the symptoms, haven't!

    Part of the problem is that, no matter what we do, the labels never really fit. It isn't possible to define all the combinations and permutations that make up conundrum kids. So they keep twiddling and fiddling.

    My biggest concern is that the lines of diagnosis don't become more exclusive as a result... that is, any child who currently has an Aspergers' diagnosis, must be included in the definition of whatever the new label series is... and, whatever the label, it must be communicated to the world at large in ways that can still be interpretted by the rest of the people in our childrens' lives, such as school.

    The best use of labels is first, to confirm that there really is a problem (i.e. not just in the parent's head!), and second, to provide access to services and funding appropriate for this student's needs. Beyond that - labels don't do anything anyway.
  6. Malika

    Malika Well-Known Member

    Wholeheartedly agree, Insane.
  7. HaoZi

    HaoZi Guest

    Keep in mind also that a lot of people with input on the DSM also work for Big Pharma.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    In the US, you get no services without that label. We can call it "quirky kid." We can call it "different." We can call it "shy." None of those things will help the child or, if necessary, the adult. Now this could be difference in Canada or Europe. I have no idea.

    I don't see what big pharma has to do with Aspergers. Many with that label aren't on medication. This is an inexact science, but we need to do what we can to get our kids help. Try getting help in the US by saying, "My child is shy and quirky." It's hard enough to get services for ADHD. So I see the necessity. I know kids who have Aspergers (diagnosed) who function much lower than my son who was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified and now autistic spectrum disorder. For the most part, in our support group, the kids are all living at home,even as adults, whether they are diagnosed with low functioning autism, Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers. I was afraid that if my son was called Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers, he may have to live alone after we are gone. But the Autism Spectrum Disorders (ASD) label will guarantee that he will continue to get services that he desperately needs for as long as necessary. Without the label, he maybe would be on his own one day and would not do very well. Heck, it's hard to get him to shower once a week. He doesn't notice or care if he smells (and he gets VERY ripe). Somebody has to force him to shower or he won't. That would go over really well at work (if he even had the nerve to go apply for a job). Just a few examples. And lots of ifs.
  9. HaoZi

    HaoZi Guest

    Big Pharma will make more off things there are medications for, like ADHD, bi-polar, etc., so those will obviously get more attention and wording from them. Don't stand to make anything, lump it all together and ignore it. That's how it seems to me.
  10. Marguerite

    Marguerite Active Member

    I have known doctors and specialists form Australia whose work was integral in CDC guidelines. One bloke I knew very well worked in the US in Atlanta CDC for several years. I was heavily involved in his research and funding, he was not funded by any drug company. Most of his funding (that was not provided by the charity I worked for) came from the Australian government.

    The article - I had problems within the first sentence. "Asperger's is a mild form of autism". NOPE. Not necessarily. I have two boys who are different, but both somewhere on the spectrum. difficult child 1 has a diagnosis of Asperger's but behaviour-wise is more typical of autism. difficult child 3, with his language delay, is the more social one. He has also been able to mentally multi-task, where his supposedly "milder form of autism" brother cannot. of the two, it is my Aspie son with the worse prognosis.

    I personally have found that the availability of the term "Asperger's" has been very useful for us. It distinguishes between our boys, first and foremost. Because they ARE different, and it helps highlight this. if both met the criteria for autism, it would still be okay (as far as the labels are concerned) but the different labels have made it easier to explain the differences to other people.

    Next, the label "Asperger's" has been useful to have around, to clarify that it does NOT apply to difficult child 3. We have said this over and over, especially to educators who think they know more than our kids' doctors. "No, difficult child 3 is NOT Aspie, he had a history of language delay which means his diagnosis is, and always will be, autism."
    But Asperger's is also autism. So how can you say, "My child is not Aspie, he has autism."? THAT needs to be clarified...

    I still remember difficult child 3's elementary school counsellor (very heavily involved in our IEP meetings etc). We have always had overwhelming evidence in support of the autism diagnosis. This counsellor had also done her own testing (without my permission or knowledge). And one day as we came out of an IEP meeting for him, we stood together, school counsellor & I, on the top of the school office steps and looked way down into the playground. All the kids were in the compulsory school uniform of grey pants and blue shirt, and school hat ("no hat, no play" is a strict rule in Australia at any time of the school year). I could just make out difficult child 3 walking along the painted lines of the outdoor basketball court, now full of kids milling around. He kept on walking, feet following the painted lines. Then the school counsellor said to me, "You must be so proud of how well difficult child 3 is doing. Look at him down there, in the crowd - isn't it wonderful that he is no longer autistic?"


    She meant that in her opinion, "because he can talk now," the autism diagnosis no longer applied. I pointed out that the diagnosis requires HISTORY of language delay, and once more told her the story of the swan on the lake - it looks serene as it glides, but beneath the surface of the water there has to be a lot of furious activity to make that semblance of serenity so possible.

    And again, it happens now at difficult child 3's correspondence school. We go in to visit often, and almost every time some teacher will comment to me about difficult child 3 being Aspie. "No, he's autistic," I say.
    "Well yes, Asperger's is a form of autism."
    So again, I explain about the difference between Asperger's and what I call "full-on autism".

    Hmm, maybe I should write to CDC about them using the term "full-on" to help distinguish.

    The term "Asperger's" will continue, I am sure. At least in informal usage. And for most of us, that is enough in our day to day lives.

    But I do wish they would stop mucking around with it and get it right...

  11. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    "The trick is to 'walk the tightrope of truth,' Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. 'People say that in autism, everybody is a snowflake,' she said. 'It's the perfect analogy.'

    I have always felt that difficult child has some "aspie-lite" traits but testing never backed me up.

    I know that many here don't like labels, but there are benefits. My difficult child has benefited greatly at school from labels. His label got him the early supports that have turned him around both academically and socially. His label got him approval from the insurance company for both a therapist and a psychiatrist. His label got him medications.

    On the other hand, I think treating the whole child would be the biggest benefit of this change to the DSM-V. You wouldn't be treating a disorder, you would be treating the symptoms specific to your child under an umbrella.

    Given this article is almost two years old, I wonder what the latest is on this?

  12. Malika

    Malika Well-Known Member

    "I know that many here don't like labels, but there are benefits. My difficult child has benefited greatly at school from labels. His label got him the early supports that have turned him around both academically and socially. His label got him approval from the insurance company for both a therapist and a psychiatrist. His label got him medications."

    That makes sense. There can be no blanket dismissal of labels - we live in societies that function with them. My own hesitation about labels is basically a fear that they are not accurate enough, which a lot of the discussion here seems to show, the effect that they potentially have on others' view of the "labelled" - children are so ready to jump on difference and having a label is of course something that makes one different - and a certain fear that giving a label creates a reality that would not otherwise operate: if you treat me like I am excluded and other, I will become excluded and other... This fear may be due to my inexperience in the field, in the sense that maybe when/if J gets his official label of ADHD - I have been told that in any case this will not happen until he is at least 6 - and I have lived with that for a while, I will get to see that he is still just himself, just a little boy with certain difficulties and that others also learn to live with and accept him for who he is, label and all.

    What does seem to me relevant is the naming of skills that are lacking - in my own son's case, difficulty with change and transitition, difficulty accepting frustration, desire to control and so on. There is no doubt about the reality of these things and the need to address them. These are the things that cause him problems. I personally just feel more comfortable talking about him like that than saying "he has ADHD" or whatever.
  13. HaoZi

    HaoZi Guest

    It's still relevant LDM. Kiddo was tested about two months ago and he made sure he wrote the present diagnosis of Asperger's AND the diagnosis based on the upcoming DSM-V (2013) of Autism Spectrum Disorders (ASD) to ensure she would be covered.
  14. Marguerite

    Marguerite Active Member

    With regard to the risks of labelling a child as different - in our area, schools and the education department are really fussy about confidentiality. I said I preferred information and openness, because the other kids in the class already knew (from their own experience) that difficult child 3 was weird. Giving them information reduced fear and hostility (at least that was the idea). Sadly, some parents (and therefore their kids) still had issues. "Retard" was a common insult for difficult child 3, usually coupled with another word meaning homosexual (and I don't mean "gay"). Once I explained to difficult child 3 that there was no way he was a retard, and the kids using that label were actually the low achievers in the class (and therefore speaking form their own insecurities) he relaxed and grinned. But for most of the school community, the autism label explaied a great deal and reduced the problems.

    As I said at the time - "the other kids already know he's different. The label isn't making him different, his autism is."

  15. Honestly, I would be fine if the Asperger's designation went by the wayside. difficult child carries it, but I have come to the conclusion that he really should be placed firmly in the middle of the Autism spectrum. Many of his issues we hoped he would "grow out of" remain, and he will be 20 in a couple of months.

    Marg, I love your example of the swan on the lake. difficult child can manage to look cool, but I have come to the conclusion that he must constantly work hard just to negotiate the smallest of tasks in his daily life. He needs LOTS of time to recover from a day at school - and this is not slacking - it's recovery time. Showering - forget about it. It takes a lot of strategy to get him to attend to personal hygiene; and I seriously doubt he ever would on his own. He has absolutely no interest in relationships with others outside of school or work assignments. Yes, he'll talk your ears off - but there is no "give and take" to the discussion. It's always about his narrow, intense interests. Fortunately for him - those interests are very helpful to other people - and I think that may be his saving grace one day. These issues sound a lot like autism to me.

    I wasn't ready to hear that or even think about it a few years ago, but now I embrace the idea. We're ready to plan for that future.

  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Marg, you hit another homerun. Wow, what a good way of putting things.

    I also want to add that the label is no surprise to our kids. They know they are different. They certainly know that they are not just normal kids with difficulties...teachers, life, other kids, etc. reminds them every day. I go back to myself as a child...suffereing badly from depression, anxiety and learning disabilities. I was failing school in a community where high achievement was the rule, and I got teased and ostracized mercilessly. I would have killed to have a label to explain to myself, if nobody else, that I actually DID try and actually was NOT stupid or lazy. Would it have made me feel I was different? I WAS DIFFERENT! Nobody had to bring that to my And to me "different" meant "crazy." So maybe I have a different perspective.

    My son knows his diagnosis and has had a professional explain it to him, without making a huge deal out of it. He is fine with his diagnosis. and rarely brings it up. He is set up to succeed and is grateful. He is also a happy young man, something I can not say *I* was. If you have cancer, you are told. If you have epilespy you are told. If you have diabetes you are told. You treat it accordingly. You don't have to tell anybody about it. But you are what you are. Not naming it doesn't change it and MAY hold back from getting help.

    Just my worthless .02 again :)
  17. TerryJ2

    TerryJ2 Well-Known Member

    Sometimes I think there is a whole industry out there that does nothing except play with labels...

    Ditto. :winnersmiley:
  18. InsaneCdn

    InsaneCdn Well-Known Member

    In the US, you get no services without that label....this could be difference in Canada or Europe. I have no idea.

    Ummm.... Canada has exactly the same problems.

    And from the posts I've run into lately... so does Europe, and so does Down Under.

    No label = no services.
    Label = some defined set of services, which may or may not be right for THIS child, but usually its better than nothing. (usually being the key word here)
  19. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I understand very much why some people (including me at times) just want to see children as me. I have a label as does my son.

    The sad fact is, there were always labels.

    Before we understood disorders, they were unofficial labels though and many children now diagnosed with autistic spectrum or any sort of mental illness or even mental retardation were hidden in institutions. I am old enough to remember. And, until they got there, they were labeled meanly by the teachers, children, and other parents. The labels went something like this:

    ADHD: Off the wall kid, crazy, badly parented child, behavior problem, spoiled brat, lazy, stupid

    Mood disorder/anxiety (I had this and would sometimes scream in school if I had a panic attack): CRAZY (I was called "mental" all through elementary school up until high school because of three outbursts I had that the teachers yelled at me for and the kids cracked up over).

    Aspergers/Autism: Weirdo, "queer" (our old word for hopelessly unacceptable), idiot, mental

    There was NO trying to explain to the other kids to be tolerant. There was NO understanding even from the teachers who we were hoping would protect us. There were NO breaks, help, interventions, nothing. I was manhandled and laughed at by teachers and kids both. Once my teacher, angry at my messy desk (I was hopelessly disorganized), threw it over so that everything fell out of it and said, "You will stay in for recess and clean this desk! Class, this is what you DON'T want your desk to look like." Everyone was laughing. Yes, my mom went to school on my behalf, but she was told I was "lazy" and "underachieving" and "defiant." She got no help or sympathy.

    There were the "bad" kids too...many just like our difficult children only they were not seperated into other classes. They were the kids who always got into trouble and got into fights and were ridiculed and vilified with no understanding in front of the class. Obviouisly, the way "different" children were treated, school was hell on earth and the teachers themselves made it even harder. They seemed to like the popular, typical kids better. Teachers aren't allowed to be this abusive anymore and they certainly can't humiliate children on purpose. But if it happened to me in an extremely classy, upper income area, it happened in other places too back then.

    Things aren't perfect yet. We don't understand all the "differences" our children have or how to help each child. But there is much stronger attempt to TRY. How did I fare with no label and no Learning Disability (LD) help? Well, the only reason I graduated high school was because my rather well off parents could afford a private tutor. Even then, I graduated number 700 (a nice, round figure) out of about 860 children in my grade. Yes, I am a babyboomer, ya think :) I tried a junior college, but dropped out and then had a series of jobs which were very hard for me. I kept getting fired. So I got married to a man I didn't love because I didn't feel I could support myself and my parents thought I was deliberately getting fired and were threatening to throw me out.

    My son, who as a form of autism, can look forward to supports for as long as he needs them. There are lots of people who understand him, and he is a happy, cheerful young adult. He had a nice childhood with people who did their best to help him, and they did help him.

    I would rather have been labeled correctly "Learning disabled, depression, anxiety disorder" than been called "mental" and "stupid." It also would have helped if I had gotten help in school so that I may have been able to go to college and fulfill my own dreams (yes, I had many lofty goals). I would have liked to have understood why I felt so sad sometimes that I couldn't even smile (for an entire year i would not smile at anybody) or why I freaked out at school so badly that I screamed in terror and got called "mental." I would have liked therapy, maybe even low-key medication so that every morning I didn't throw up in fear before school.

    I guess my point is, we always had labels. It's just that the old ones were not well meaning at all and did not even try to explain why some children were "different." And the "interventions" were administered by clueless teachers and mean kids who didn't understand us. I prefer it this way. I know it isn't perfect yet, but it's a big improvement over what used to be.

    JMO :)
    Last edited: Jun 1, 2011
  20. Marguerite

    Marguerite Active Member

    I heartily endorse that, MWM.