DSM-V

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I just wanted to share something that I learned today that made me feel a little more at ease. Things like that seem to be few and far between lately so I thought I'd share. I had an appt with the neuropshychologist my son sees and we talked a bit about his take on the changes being proposed for the DSM-V. He works with lots of kids on the spectrum and he had a very positive take on the whole thing. In a nutshell, his opinion was that the new criteria will have at least the same if not more more specificity and that the sensitivity of the criteria will be significantly higher. He was confident that doing away with the distinction between Asperger's and HFA will be a good step not a bad one. One example he gave for his opinion is that children who had a speech delay are typically excluded from getting an Asperger's diagnosis under the existing criteria when this may be an appropriate diagnosis (sometimes speech delays are not actually related to neurological condition). Under the new criteria those children will most likely receive a diagnosis of ASD and there won't be any need to differentiate between AS, HFA, PDD-NOS, etc. I won't pretend to understand the finer points of the current vs the new criteria but I felt much better after this discussion!

My understanding, and I may be wrong, is that it will exclude people without repetitive behaviors though. My son, diagnosed PDD-NOS, has no repetitive behaviors. I don't think he would qualify under the new, proposed rules although he definitely has some of the other major things of an ASD. I don't think it is uncommon. What about people like him?

Exactly, they'll call it social communication disorder and put it in the "to deal with later pile", as if it's not disabling and without any real explanation of it's causes. What if you've had a social communication problem since you were two years old and failed to seek attention when you were an infant?

The category is repetative behaviors or restricted interests. Kids on the spectrum have restricted interests too. My son doesnt have many repetative behaviors either, but restricted interests, YES!

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94#

You can click the link to read the actual criteria that is proposed. The tabs on the top will change what you are reading to understand more.

My son doesn't have repetitive behaviors (that I have noticed) or restricted interest (he is 3) but has issues with communication, both in understanding and speacking sometimes (though he understands more than he can speak). So, for someone like him, when the description changes, would he no longer qualify for services through the Dept of Ed?

Also, does the diagnosis of Asperger qualifies a person for more services or a different type of service?

momof three, you have stated before that when outside your son needs to keep moving, walks fast , and asking or telling what he is looking at or doing. If he does that more times then not, I would consider that a repetative behavior. As, most typically developing kids go out and play. It ican be hard, I know most think a repetative behavior is like spinning wheels or flapping hands, but any interest or behavior that your child does more often then not is a repetative behavior. Or a restrited interet could be labeling or pointing out thing every time tha tyou go outside. If he does that more then playing, etc..., then it is a restricted interest.

I can look back at some of my sons behaviors at 3 and say they werent repetative or restricted, but some of them were. He liked to watch the same shows over and over, to the point of memorizing and reenacting them. He also played nicely with toys, played at the park beautifully, played with older and younger kids, loved to chat with adults, etc...but he did have the begonnings of repetative behaviors and restricted interests, It wasnt so easy to see cause he did many other things typically.

Our higher functioning kids most likely wont get an ASD diagnosis till later on, like elementary school age anyhow, when their issues are much clearer. it isnt unheard of for a 3yo to love the same shows or imitate them, but when a 6yo is doing it still, then we have issues!

As for Aspergers getting more services, that isnt how it is in NY. Here the diagnosis of AUTISM, not PDD-NOS or Aspergers, gets the most services. The school district can choose to NOT lable aspergers kids with Autism classification. My sons district refuses to classify him autism rather they will use Other Health Impaired. Autism classification here entitles a kid to certain number of speech per week, autism consultant in the class and parent trainer.

Thanks for your reply. My son actually wasn't doing much pointing until about 3 weeks ago when I started our "mommy therapy". I was reading that one of the signs of autism was that lack of shared interest. I reealized that my son wasn't really showing me much so we started taking lots of walks and visits to the park where I would point to things and say the name so that he would learn that things had a name and encourage him to speak. Being really nervous about everything, I made sure he had to wave everytime someone left (and not just say "Bye") and he had to point and call the name of everything he wanted and most things we saw.

Now, when we go out, he will point at things (with his wrist or finger) and call the name. Sometimes he will just call the name. We haven't started therapy as yet so I am not sure if I taught him the right way, since he acts as if I should respond whenever he says something. I do think it did a lot of good for his language since he is speaking more, but maybe I messed up something else. Does that mean I taught him a repetitive behavior?

As for the movement, he has learned that if he walks away from me, that means we go home so he hasn't done that anymore, but you are right, he doesn't like to "wait" when I stop at the store (if he is not in a stroller). He feels like if we are in a store, we must keep looking to see what's around the next corner. I was a bit on the fence with that one, but I can see how it would be considered as a repetitive behavior.

I am also in NY. The school gave my son a diagnosis of being on the spectrum (he scored 31) but the neurologist would not diagnose him. Looking back, we may have messed up the school interview a little bit since it involved the shool officials, my husband, my sister and I. My sister started crying and it just went south from there. When I look back and am brutally honest, I now realize my son never had more language. When he turned 2, his sister was born and between working full time and caring for all 3 children, I never noticed that he wasn't speaking as much as he should He was lost in the middle. I would just do things for him because it was easier and faster. I think that's why he is speaking so much now, in the past 3 weeks, he has gotten so much attention and has to use his voice to get his needs met.

I am nervous that without a diagnosis, and a change in the DMV guidelines, my son would not get the services he needs. He still needs all the therapies he can get to help him catch up, especially the speach therapy.

Last edited by MomofThree1975 on 05 Apr 2012, 9:36 am, edited 1 time in total.

I won't argue the merits or deficits of the new criteria because I simply am not educated enough. I have read them and I truly don't know what effect that it will hve on my own son's diagnosis because he is similar to yours, Momof Three1975. He did not show clearly repetitive behaviors at 3 (though he does now at 6 as MMJMOM suggests) and while the autism specialist checked the box on restricted behaviors, I think that could easily have gone either way. She is a very experienced clinician and understands more than I think some do the SPECTRUM nature of this condition and she saw it in him. What gave me hope was this neuropsychologist's opinion that my son would still be diagnosed under the new criteria. He has worked with the groups who have developled these new criteria and I believe that the goal is not to create a "deal with it later" pile but it is actually to identify kids earlier because they all have seen how much difference early intervention is making. Honeslty though, I can't even wrap my head around what this might mean for adults with ASDs. I can only hope that it is positive or at least neutral.

They tend to give loads and loads of services to the kids before elem school regardless of diagnosis ASD or other. My son was classified a preschooler with a disability, he got speech 4x a week, ot 2x and PT1x a week. The speech was a LOT! And my son was my only child at the time, and I paid every second of my waking time to him and his speech didnt take off until after 3, which is when he went to school and got more speech. Now, either the therapy worked, or he would hvae take off with speech either way! I will never know. I did EVERYTHING with him, played on the floor, labled, spoke to him no stop, pointed out and showed him everyting. SO it wasnt lack of attention or anything like that.

I recall in my studies before I became a teacher, learning that kids are born learners They absorb from their surroundings like a sponge. Uness we lock them in a dark closet, they will learn spontaneously. I think we as moms always will feel responsible for our childrens issues... Did I do something wrong? Did I talk to him enough? Did I do too much for him? Not enough for him? It is just our nature as mothers

My son at 3 and 4 and close to 5 was observed by 2 different psychologists at school, social worker, had 2 different sets of special ed teachers and aides, and NONE ever once thought ASD for my son, regardless the numerous times I came to them with issues that should have set off alarm bells. It is sooo hard whrn they are that little, and dont have classic autism. It took many more years and wonderful therapist and psychiatrist to diagnose him. I NEVER, in a MILLION YEARS thought ASD, and I am a psecial ed teacher too In fact, I crossed it off the list early on, casue I too had that stereotypical view in my head. My son was WAY too social, way too verbal, made eye contact, loved hugs, had imaginative play, etc...so I was satisfied he didnt have ASD. Little did I know....

I uesd to make rationalization like "Oh he loves Blues Clues thats why he imitates it so well" or "I tought him how to jump when excited and now he jumps all the time when he is excited, but that is casue I showed him!" "I hold his cup for him that is why he isnt able to hild it himself (at 2 1/2) to have a drink" OMG been there done that with the rationalizing my sons behaviors, issues, etc...

The DSM-V is going to be an utter abomination of practically every neuropsych disorder/category. Removing AS before we properly study it is just shameful. I feel that DSM-V is going to make ASDs even more overdiagnosed than they are right now. Everyone says the criteria is going to be more stringent, but I highly doubt that the diagnoses will decrease. The criteria are going to be such a broad, unspecific bunch of nonsense, and this seems to be the trend with ALL categories of disorders in the DSM-V.

I'm also greatly unhappy about them categorizing ASDs as "neurodevelopmental disorders" in the DSM-V. EVERY single DSM diagnosis is a result of some sort of improper neurological development. This new label is making it look like ASDs and Tourette's and ADHD are there from birth and other psych disorders are not. It's going to create more stigma for disorders that don't fully show up until young adulthood, such as schizophrenia. It's just going to make it look like it's not someone's "fault" for having an ASD, but it IS someone's fault for having bipolar disorder or schizophrenia or another "mental illness."

Finally, doing away with the distinction of HFA vs. AS is a terrible idea at this point in time. I am a strong believer that there is not enough evidence that AS is TRULY a form of autism and not a form of NVLD. And even if AS is a form of autism, why is there no speech delay in AS? A speech delay in one but not the other says that SOMETHING is different about AS and HFA brains, and the fact that these differences aren't being looked at before AS will be thrown away is a travesty, in my opinion.

AS already excludes people with no repetitive behaviors.



The difference between DSM-IV and DSM-V where repetitive behaviors are concerned isn't that one of them lacks this criteria. They both have it, but where DSM-IV only requires one out of four in its list, DSM-V requires two out of four, and the list of four possibilities is different.



Technically, if your son doesn't have any repetitive behaviors at all that are listed under DSM-IV, he shouldn't have been diagnosed with AS to begin with.

Just telling you what the criteria say.

I very curious about something. There is quite a lot of negative talk about what will happen once DSM-V becomes affective. I'm wondering how many of the nay-sayers that are so dead set against it have actually spoken to a professional about it to see if they agree.

All the professionals I've talked to about it so far, feel that DSM-V will include pretty much everyone that now qualifies for Asperger Syndrome. They're the ones doing the diagnoses. It seems to me to stand to reason that if they think it's not going to change much of anything but the actual labels, that's probably true.

I never said he was diagnosed AS. He was diagnosed PDD-NOS.

If you read the actual DSM-V criteria I cannot see how PDD children wouldnt qualify. My son is mildly Aspergers, and he will 100% qualify based on the criteria. And Aspergers is higher functioning then PDD-NOS. SO if higher functioning kids wil still qualify, then there should be nothing to worry about. Actually, had the new criteria been in place a few years ago, I am certain my son would have been diagnosed sooner and easier then with the DSM-IV criteria. It appears much more inclusive then the old criteria!

I think people are panicking now unnecessarily. I agree, speak to a professional about where you think your child will fit in when the DSM-V comes out. Also, what services does he get now that you are worried about him not getting. If there is a need for speech, if his scores are below a certain %, then he will get speech regardless of the diagnosis. Same for the others.

I know its scarey, to think that our children might be missing out on services, etc...but I think the whole idea for the new criteria is to make things BETTER rahter then worse. My son will most likely be Autism 1 under the new criteria, as opposed to Aspergers now. The district told me my son doesnt have "Autism" and wont classify him as such, even though he has medical doccumentation proving his Aspergers diagnosis. BUT if he is diagnosed Autism 1, they cannot say he Autism isnt Autism, as they are telling me Aspergers isnt Autism to prove their point!

Asperger's is not necessarily higher functioning. My son is very high functioning, but he did have a language delay when young. He was just diagnosed at 15 1/2. He is fully mainstreamed, has been since kindergarten, was in the gifted magnet program in our district and almost all of his teachers couldn't see it other than him coming across as painfully shy. One even questioned his need for a 504 since he is one of her strongest students (didn't qualify for an IEP due to no academic need). He blends in (he can lie very well, understands idioms as well as my NT daughter, understands personal space etc.), but there is no doubt when you see him in social situations that something it going on and definitely has deficits in both social and social communications. He has a cousin w/AS and is much higher functioning than him -- he has aides in the classroom, doesn't understand idioms or personal space etc.).

The only label I care about is the label that gives me the most services. Being that said, I thought the diff with Asperger's and Autism is that Aperger has normal or early language development?