Proposed changes for DSM-5 - what's your take?

[elise1mds]

Suggested changes for terms of diagnosis were released yesterday as part of the new DSM volume that is slated to be released in 2013. Some of the big changes include lumping all autism spectrum disorders together (instead of having autism, Asperger's, HFA, and PDD-NOS as separate diagnoses) and diagnosing patients as "high risk" for disorders they may never fully develop such as schizophrenia.

 

Full article: http://news.yahoo.com/s/ap/20100210/ap_on_he_me/us_med_mental_disorders

 

As the mom of an Aspie, I know I'll be watching this, but I haven't entirely decided where I stand on it. I'm curious to see what the opinions of other parents of (or patients of) an Asperger's or autism diagnosis are. What do you think?

[Niffercoo]

Well, as a mom with both an Aspie and a child with a PDD-NOS diagnosis, I will be glad to see it redefined as Autism Spectrum Disorder. But I have children who don't fit into their diagnoses very neatly. My Aspie struggles HUGELY with academics. He is several grade levels behind. But folks hear Aspie and think he's a supposed to be a geeky genius. My girl with PDD-NOS... well, she's a girl so right there all the stereotypes fly out the window. And she's much more affected by her autism than you would think by reading the description of PDD-NOS. Lastly, I believe that the treatment methods and therapy approaches for ASDs are the same, regardless of whether or not you are dealing with an Aspie, PDD-NOS, or classic autism. There are core deficits for the spectrum, and we need to look at the overall quality of life of the high functioning kids as they reach adulthood and see that their deficits are not being addressed by most educational or therapy programs.

 

Now, my Aspie would disagree vehemently with me. He does NOT like me to say that he has autism. He does not like to be put into the same category as his sister. He sees her as much lower functioning than himself, which is true is some ways and not true in others.

 

Does anyone know how this will affect those of us with kids who are already diagnosed? Will we have to go back in for a diagnosis change? Or will that happen at their next scheduled appointment? Will it just be semantics or will we have to pay for a new evaluation?

[JoyfulMama]

I think putting many dx on the Autism Spectrum will streamline some things (services, treatment, payment), and would hopefully be helpful more than hurtful to the majority.

 

HOWEVER I have a major concern with diagnosing with a code for a "high-risk". It is one thing to make a written note in a chart - it is far another to have a code which will then be more easily noted for billing purposes. I guess in some cases this could be helpful, as the "high-risk" for xyz could be a reason to document the need for continued treatment for an insurance company. But I think it is a slippery slope. I, for one, would be very hesitant to document with a high-risk code.

[texasmama]

I think putting many dx on the Autism Spectrum will streamline some things (services, treatment, payment), and would hopefully be helpful more than hurtful to the majority.

 

HOWEVER I have a major concern with diagnosing with a code for a "high-risk". It is one thing to make a written note in a chart - it is far another to have a code which will then be more easily noted for billing purposes. I guess in some cases this could be helpful, as the "high-risk" for xyz could be a reason to document the need for continued treatment for an insurance company. But I think it is a slippery slope. I, for one, would be very hesitant to document with a high-risk code.

 

I agree with this. I am an LCSW (Licensed Clinical Social Worker/therapist) and am concerned about the "high risk" diagnosis. There are lots of ways to document the need for services for billing purposes without doing this, though at this point, many mental health professionals use the term "rule out" as a provisional diagnosis. It is different than the term "high risk", though.

[zootle]

I'm an Occupational Therpist and I thing the change for kids will be good. I think it will be easier for them to get services. I have a son with several issues that we couldn't get help for thru the insurance or school systems because they didn't fall under the right disorders. He would be able to get help now. Unfortunately we have privately paid for every thing for the last 10 years. Talk about a hit to the bank account.

Don't get me started on some of the mental illness changes. Before long everything will be considered disease for treatment.

Cindy

[JoyfulMama]

I agree with this. I am an LCSW (Licensed Clinical Social Worker/therapist) and am concerned about the "high risk" diagnosis. There are lots of ways to document the need for services for billing purposes without doing this, though at this point, many mental health professionals use the term "rule out" as a provisional diagnosis. It is different than the term "high risk", though.

 

I think the main difference is that there is no coding done for a R/O note in a chart. Only the final diagnosis is coded (at least when I was working).

 

Also, labeling a person as "high-risk", as codable, could potentially (the way the system is now) eliminate a person for qualification for new life insurance or health insurance. OR if they are still "insurable" in the eyes of the company, their rate will be significantly increased. Well, THAT'S a sure way to increase confidence in seeking therapy or treatment!

[Guest]

Right away I wondered about the implications for insurance and services. I have an Aspie who is extremely high-functioning, and I began thinking about whether or not she would meet the "qualifications" for services if the disorder is characterized as autism. We already have an insurance company which fights us on OT, vision therapy, social skills therapy, etc. -- everything except psychiatric services. Would it become easier -- because she would be labeled autistic -- or harder, because she might not fit the diagnostic criteria? I have not yet seen the revised criteria so don't know how they handled the extremes into which the spectrum divides itself.

[Misty]

Sarah,

I just realized you are in OK.. Are you on the OK homeschooling Aspergers yahoo group? http://groups.yahoo.com/group/OKHomeschoolOfAspergers/

[Mom22ns]

As the mom of a child with a PDD-NOS diagnosis, I don't think he could have qualified with the new criteria. I would think some Aspies would have the same problem. Ds was pretty severe when he was little, but his symptoms were limited in spectrum. He didn't meet all the criteria for Autism, even though the symptoms he had were severe, thats why he was PDD-NOS. I can't imagine where we would be without the services his label helped us get.

[elise1mds]

Thanks for all the input. I've been hashing it over and over in my head and have come to the conclusion that the autisum diagnosis change is probably inevitable and could, in the end, lead to more customization of therapy in a school setting, which would be a really good thing. I see that being the trend, anyway, because there's no way the current education system can continue as this generation gets older since these kids will grow up with everything being customizable and will expect the same of education... but that's another post entirely. My son does NOT want to be labeled as autistic, though, so I can see him being quite upset if they do change his diagnosis.

 

The "high-risk" thing scares me, so I hope that one gets knocked out in the next few years before the book is published.

 

Misty, I had never heard of that group, but I'll send you a message about it. That'd be wonderful! Thanks!

[asta]

Before long everything will be considered disease for treatment.

Cindy

 

This is my fear. I already see things that, IMO, would have, in the past, been dealt with as *lifestyle* issues (eg: perhaps you need to simply accept that you're divorced, not wrap 20 years of your life around it and call it "situational"), now a days are deemed pathologic.

 

Also, labeling a person as "high-risk", as codable, could potentially (the way the system is now) eliminate a person for qualification for new life insurance or health insurance. OR if they are still "insurable" in the eyes of the company, their rate will be significantly increased. Well, THAT'S a sure way to increase confidence in seeking therapy or treatment!

 

This is precisely why I have not had my DS officially Dx'd. Everyone agrees he is aspie, but it isn't going in a chart, and he isn't getting services.

 

He had the same speech impediment I had. I knew how to fix it, so I did. He has the same "I have knowledge on that subject, I must comment on it" that I do, so we're working on it. He has similar struggles in math, so I have more math programs than I can count. Unlike me, who thinks in pictures, he has what appears to be an APD, so that is the next thing we'll work on (eg: I'll get the info from the appropriate professionals, and we'll find a work around).

 

I'm like my own mom in this manner: I don't want any doors closed to him, and they will be closed the minute this is written down somewhere. He is brilliant and functional, and I want people to see THAT, not a Dx.

 

Oh, and I hate the DSM, I have to deal with it all of the time where I work.

 

 

a

[at the beach]

This is my fear. I already see things that, IMO, would have, in the past, been dealt with as *lifestyle* issues (eg: perhaps you need to simply accept that you're divorced, not wrap 20 years of your life around it and call it "situational"), now a days are deemed pathologic.

 

 

 

This is precisely why I have not had my DS officially Dx'd. Everyone agrees he is aspie, but it isn't going in a chart, and he isn't getting services.

 

He had the same speech impediment I had. I knew how to fix it, so I did. He has the same "I have knowledge on that subject, I must comment on it" that I do, so we're working on it. He has similar struggles in math, so I have more math programs than I can count. Unlike me, who thinks in pictures, he has what appears to be an APD, so that is the next thing we'll work on (eg: I'll get the info from the appropriate professionals, and we'll find a work around).

 

I'm like my own mom in this manner: I don't want any doors closed to him, and they will be closed the minute this is written down somewhere. He is brilliant and functional, and I want people to see THAT, not a Dx.

 

Oh, and I hate the DSM, I have to deal with it all of the time where I work.

 

 

a

 

Thank you for sharing your thoughts on this, Asta. I have not officially had my dd 10 diagnosed other than the IEP eval they did for her in school and she did get some diagnoses there (dysgraphia, dyscalculia, NLD, among other things) but so far no diagnosis of PDD-NOS or HFA or Asperger's. I am sure she would get one of these diagnoses if I took her to be evaluated. I have wondered what those diagnoses on her school chart might mean later. :001_huh: When we had her in OT, the OT shared that getting a diagnosis in her medical chart of autism or pdd-nos would potentially hamper her getting all kinds of medical services. She had seen insurance companies deny all kinds of treatments for medical things using the exclusion they had for treating autism. I don't want to have a fight like that on my hands. My dd went to OT for "lack of coordination." The OT also shared that she had worked with other kids whose parents later regretted getting a dx of their kids being on the spectrum because by the time the kids were older they no longer exhibited any characteristics that had caused concern when they were younger.