New definition for Autusm...

[DianeW88]

Which is expected to sharply cut the rate of diagnosis and end services for some currently diagnosed kids.

 

http://www.msnbc.msn.com/id/46060802/ns/health-childrens_health/

 

There is also a link on the page to another article stating that the girls' problems in New York have been diagnosed as "mass hysteria". The thought that crossed my mind was "Salem Witch Trials Part Deux".

 

Ok, seriously.....I swear I typed "Autism". Grrrr.....why can't I edit the title of my thread??? Typos bug me!!!

Edited January 19, 2012 by DianeW88
Because apparently I can't type worth beans!!

[Wendi]

Interesting. I'm guessing my son would not qualify for the diagnosis, as his Asperger's is relatively mild. (It's just that it's combined with high anxiety/OCD, a "mild" language disorder, and ADHD, so altogether it doesn't seem too "mild"!)

 

I assume this will have a big effect on the public school students, since the parents will have trouble convincing the school to provide therapy or accommodations if the child has no diagnosis.

 

I understand the need to have an accurate, easy-to-understand diagnosis, but I know that just because someone doesn't seem to fit into a neatly defined box, it doesn't mean there's nothing wrong with them. With most of these issues, there is a spectrum, and you can be pretty close to diagnosable, have some struggles you need help with, but not qualify because you don't exactly meet the definition. I do worry about kids (and adults) who really do have some social/emotional/language/sensory issues that may be told, "Hey, you don't have Asperger's or autism. There's nothing wrong with you. Just stop acting like that!"

 

Wendi

[Ibbygirl]

Which is expected to sharply cut the rate of diagnosis and end services for some currently diagnosed kids.

 

http://www.msnbc.msn.com/id/46060802/ns/health-childrens_health/

 

There is also a link on the page to another article stating that the girls' problems in New York have been diagnosed as "mass hysteria". The thought that crossed my mind was "Salem Witch Trials Part Deux".

 

Ok, seriously.....I swear I typed "Autism". Grrrr.....why can't I edit the title of my thread??? Typos bug me!!!

 

Services? Please! My son has profound Autism and can't get services. We've been on the wait list for almost 8 years! :mad::glare:

[frugalmama]

Not good for us - we are just starting down the road to an official diagnosis for DD - we strongly suspect ASD and SPD. Hers is quite mild, but as she ages it is becoming more apparent and more problematic for her. She wouldn't qualify under the new definition - she just barely meets the current one.

 

We are in the position of needing therapy to work on some issues now that I don't know how to work with her on further - I really hope this doesn't prevent us from getting what she needs.

[frugalmama]

Services? Please! My son has profound Autism and can't get services. We've been on the wait list for almost 8 years! :mad::glare:

 

Have you considered moving? I know here in South Texas there is no waiting list for services in most cases.

[MeaganS]

Interesting. I've looked at both the DSM-IV and the proposed changes, as my daughter is getting an in-depth evaluation next week (finally!). And I think she fits better under the new definition than the old one. If she is diagnosed, she's definitely high-functioning, so one of those in particular that the article is referring to.

[Ibbygirl]

Have you considered moving? I know here in South Texas there is no waiting list for services in most cases.

 

We may have to. I work with my son extensively and do my own version of PT, OT and ST. It helps, but since I'm not a real therapist I don't know if I'm doing him a disservice or not. :(

[*Lulu*]

Interesting, thanks for posting this. I wonder if there will be a new category for those like my DS who would only fit 3 of the 4 catagories?

[Forget-Me-Not]

“The proposed changes would put an end to the autism epidemic,†said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. “We would nip it in the bud — think of it that way.â€

 

:confused: This has got to be one of the stupidest things I have ever read. It's not going to nip anything in the bud. It's simply going to leave a whole group of people without recourse for their problems unless they have the means to handle it privately.

[SheilaZ]

Ugh, I went to read the new definition in the hopes that my 2 sons wouldn't qualify anymore.

Sadly, the new definition fits them even better than the old aspergers one. (I don't live in denial, but I do hope.)

Thankfully, we've been able to get years of therapy and the boys have wonderful coping mechanisms. They have certainly beat the prognosis they wer given years ago.

Edited January 20, 2012 by SheilaZ

[sbgrace]

Where is the new definition? My son is pdd-nos. I wonder if this will exclude him from services/the health insurance mandate.

[MeaganS]

Where is the new definition? My son is pdd-nos. I wonder if this will exclude him from services/the health insurance mandate.

 

If you do a google search of DSM-V autism, you should find the official website towards the top. Although it is down for me right now...

 

ETA: I just started working for me. Here's the link.

Edited January 20, 2012 by MeaganS

[Dandelion]

:confused: This has got to be one of the stupidest things I have ever read. It's not going to nip anything in the bud. It's simply going to leave a whole group of people without recourse for their problems unless they have the means to handle it privately.

 

:iagree: Complete idiocy. If it's that easy to end epidemics, let's just change all the diagnostic criteria for every disease/condition known to man and usher in Utopia. :blink::confused::glare:

 

I've been following these proposed changes for awhile. Personally, I don't see the value and have serious concerns about basically "undiagnosing" thousands of people across the country (my son included).

[PeacefulChaos]

:confused: This has got to be one of the stupidest things I have ever read. It's not going to nip anything in the bud. It's simply going to leave a whole group of people without recourse for their problems unless they have the means to handle it privately.

 

:iagree:

Changing the definition doesn't end the epidemic. It's just changing the definition. :confused:

[tex-mex]

 

I assume this will have a big effect on the public school students, since the parents will have trouble convincing the school to provide therapy or accommodations if the child has no diagnosis.

 

Unfortunately, back in the "stone age" when I taught in public schools (1987-2004) it was quite common for many SST (to see if the child qualified for testing & IEP) meetings to say that many students with Asperger's did not have the "academic" need for intervention like 2 standard deviations difference between IQ to ability/grade level performance.

 

Socially, there were no programs back then to help the child in recess or lunch times to navigate the waters socially. If you had an extremely Autistic student, then yes, they qualified for services. Many times parents ended up paying out of pocket for outside play therapy, OT/PT sessions, etc.

 

Today, I realize there are many people who are under the Autism Spectrum -- and I wonder about those who do not qualify for Asperger's Syndrome -- but get a PDD-NOS or NVLD diagnosis. To me, that is very difficult to convince educators of the need for services or intervention for this end of the spectrum.

Edited January 20, 2012 by tex-mex

[TheTwinsMom1]

Right now my two are diagnosed as PDD-NOS and actually with the new criteria we fit the definition better than we do right now. So for us, the changes seem to make more sense, than the current definitions.

[TheTwinsMom1]

Forgot to say, that for alot of people the changes are actually gonna open up more services, as instead of doctors/insurances/schools saying well you don't have the right type of autism to get services, the kids will either have autism or won't, thus opening up services that some get denied right now, like in the case of some aspergers kids or PDDNOS kids.

 

So as far as the article goes, I know alot of parents/doctors/schools prefer the new definition they are trying to get in the DSM-V to the current ones.

[SweetMissMagnolia]

oh my--sounds like a complete mess....ds9 has asperger's and anxiety,add,adhd---will definately have to talk to his dr at our next visit to see if she knows about it and if the changes would affect his dx.....I have a feeling since his is mild that it might affect us...

[kitten18]

:iagree: Complete idiocy. If it's that easy to end epidemics, let's just change all the diagnostic criteria for every disease/condition known to man and usher in Utopia. :blink::confused::glare:

 

:iagree: I thought that was soooo stupid.

[JessicaLady]

I came across this story earlier in the day including the following:

 

Unfortunately (or fortunately?) J still meets the new criteria. And I thought he was doing so well!!!!

 

My son is PDD-NOS. He had his Neuro check up Tues. and the dr. actually adressed the new dx criteria and said he feels my son is on the spectrum. He still exhibits many of his original symptoms, to a lesser degree and is verbal now, but is still ASD.

 

I'm ok with it. (like I have a choice, right? LOL)

 

J

[Kathryn]

:iagree:

Changing the definition doesn't end the epidemic. It's just changing the definition. :confused:

 

Agreeing. DS will still qualify, but I wonder what will happen to all those that don't.

[DawnM]

I believe my son would still qualify, he certainly has at least one trait from each category.

 

We don't have an official diagnosis yet, he is still wait listed and won't be tested until the summer of 2012......unless we pay through the nose for it sooner. So, we wait.

 

Dawn

[sandellie4]

I have two students dx with ASD, one with Asperger's and the other with high functioning autism. Would they have to be re-dx to continue receiving SSI, etc.? (They do meet the new criteria, but I'd rather not go through the dx process all over again!)

 

Sandy

[justamouse]

:confused: This has got to be one of the stupidest things I have ever read. It's not going to nip anything in the bud. It's simply going to leave a whole group of people without recourse for their problems unless they have the means to handle it privately.

:iagree:

 

This has me very worried. There is so much autism in NJ, I can't imagine it getting any harder for these poor parents. :confused:

[Parrothead]

So the article says 55% of the people who now have autism suddenly won't. What is it that they will have? Or will they suddenly be normal? Doesn't that just change the definition of normal then? Or maybe there will be a new disorder for those 55 percent.

Edited January 20, 2012 by Parrothead

[amo_mea_filiis.]

My dd still meets the criteria. :(

[frugalmama]

I have two students dx with ASD, one with Asperger's and the other with high functioning autism. Would they have to be re-dx to continue receiving SSI, etc.? (They do meet the new criteria, but I'd rather not go through the dx process all over again!)

 

Sandy

 

I'm worried about this too - after diagnosis our plan was to get DD onto SSI so she could receive more therapy

[cin]

Not good for us - we are just starting down the road to an official diagnosis for DD - we strongly suspect ASD and SPD. Hers is quite mild, but as she ages it is becoming more apparent and more problematic for her. She wouldn't qualify under the new definition - she just barely meets the current one.

 

We are in the position of needing therapy to work on some issues now that I don't know how to work with her on further - I really hope this doesn't prevent us from getting what she needs.

 

This is us. I guess being quirky is just that; quirky. Well, hopefully, we'll be grandfather-claused in. Or the people working with us can see that sheDOES need it

 

But after reading the article again, I wonder if this really affects ASPERGER'S or PPD-NOS. Do those have different diagnostic criteria? I guess the ones that don't meet the Autism criteria will just be bumped down to Asp or PPD. So the epidemic will then be Aspie/PPD. And then they will rewrite that do eliminate that one. And then the mildest Aspies and PPDs will be screwed. Oh Yay.

Edited January 20, 2012 by cin

[Joyofsixreboot]

So now my kid is fine. Not. Sigh.

[thescrappyhomeschooler]

Agreeing. DS will still qualify, but I wonder what will happen to all those that don't.

 

:iagree: I was thinking the same thing. DS will still qualify as well. I don't understand how changing the definition changes the problem.

[DianeW88]

This is us. I guess being quirky is just that; quirky. Well, hopefully, we'll be grandfather-claused in. Or the people working with us can see that sheDOES need it

 

But after reading the article again, I wonder if this really affects ASPERGER'S or PPD-NOS. Do those have different diagnostic criteria? I guess the ones that don't meet the Autism criteria will just be bumped down to Asp or PPD. So the epidemic will then be Aspie/PPD. And then they will rewrite that do eliminate that one. And then the mildest Aspies and PPDs will be screwed. Oh Yay.

 

I thought when reading it they said that there will no longer be a diagnosis of Aspergers, etc. anymore. You're either autistic or you're nothing.

[kathymuggle]

Zippy up my flame proof suit.....

 

disclaimers: I want all kids who need help to get it - all!

 

2 nephews have severe autism. One is slightly verbal, the other not at all. Both still wear diapers. One is a flight risk, and destroys things. One is aggressive. Neither have any academic skills, they will never live alone. They have no real friends, they will not have adult relationships. Their parents lives are very, very hard. :sad: They are 9 and 12.

 

Perhaps I have read one too many discussion where people who have kids with Aspergers or NVLD argue for "autism acceptance." And by autism acceptance, I mean the idea they were born this way, there is nothing wrong with them, no one should try to "fix" them (although "help" might be allowed in some circumstances).

 

I think the definition of Autism and Aspergers should be separate, and classified separately. I intensely dislike them falling under the same umbrella term.

 

On a personal note, I think if I had ever pursued a diagnosis of autism for my oldest child (boy, almost 16), I might have gotten it. Ds used to run on tiptoes, has hand flapped and can have poor eye contact. He can be a disorganised space cadet. He does fixate on topics and can be literal. He is also extremely articulate, capable of living alone (perhaps even now - not that that is going to happen!), has friendships, is capable of getting and holding almost any job he sets out for, etc, etc.

 

To say that my son should have the same diagnosis as my nephews just boggles the mind.

 

I get Autism is a spectrum, but I am not sure the public really does. I think the understanding of autistic people on either end of the spectrum is harmed by this umbrella term.

 

I wish Aspergers and Autism were a separate diagnosis.

[6packofun]

If it works both ways, then I think it could be good. The article mentions a 37-year old woman who has Aspergers and apparently can't work in any job whatsoever so she has to be on disability? I thought Aspergers was on the more functional end of the spectrum and it's scary to think of that many people being told they *can't* work, so just take disability. Some will definitely need it, but do we as a society--and parents--need to be focused on what these children and adults can't do or CAN? I'd rather pay for pro-active services and education for these families.

[Kathryn]

This is us. I guess being quirky is just that; quirky. Well, hopefully, we'll be grandfather-claused in. Or the people working with us can see that sheDOES need it

 

But after reading the article again, I wonder if this really affects ASPERGER'S or PPD-NOS. Do those have different diagnostic criteria? I guess the ones that don't meet the Autism criteria will just be bumped down to Asp or PPD. So the epidemic will then be Aspie/PPD. And then they will rewrite that do eliminate that one. And then the mildest Aspies and PPDs will be screwed. Oh Yay.

 

No, as Diane said, there will be no PDD-NOS or Aspergers. You're either autistic or not. This is the list of neurodevelopmental disorders as it stands for the DSM5: http://www.dsm5.org/proposedrevision/Pages/NeurodevelopmentalDisorders.aspx

 

ETA - if you click on autism spectrum disorder, you can read the proposed diagnosis criteria, and if you click on the "severity" tab, you can see the scale of severity proposed. So, instead of "classic" or "high-functioning," I expect that in the future, ASD kids would be referred to as Level 1, 2, or 3.

Edited January 20, 2012 by kebg11

[frugalmama]

If it works both ways, then I think it could be good. The article mentions a 37-year old woman who has Aspergers and apparently can't work in any job whatsoever so she has to be on disability? I thought Aspergers was on the more functional end of the spectrum and it's scary to think of that many people being told they *can't* work, so just take disability. Some will definitely need it, but do we as a society--and parents--need to be focused on what these children and adults can't do or CAN? I'd rather pay for pro-active services and education for these families.

 

I totally get the 37-year old on disability with ASD - it can be very hard to work if you have ASD unless you're really into your field and they are willing to put up with your quirks. I have some ASD tendencies and totally don't understand body language at all, and it was terrible when I was working because I couldn't tell when my boss was joking and when she was actually serious. While I did work several jobs for a while, dealing with people on a day to day basis was incredibly stressful for me and I'm glad I now work from home running my own business.

[Mimm]

So the article says 55% of the people who now have autism suddenly won't. What is it that they will have? Or will they suddenly be normal? Doesn't that just change the definition of normal then? Or maybe there will be a new disorder for those 55 percent.

 

This was my question. There's nothing wrong with making definitions clearer and more accurate. They do that all the time. And in the process, people who had a particular disorder may not have it anymore. But you can't just suddenly say, "Ok, you're normal now. Go and be healthy." :confused:

[Mommy22alyns]

:iagree:

Changing the definition doesn't end the epidemic. It's just changing the definition. :confused:

 

 

:iagree: