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Old 01-24-2012, 04:08 PM   #1
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So if the DSM V is accepted...

is my son cured?

Just after he turned 3, my son was diagnosed with PDD-NOS (on the autism spectrum.) Too verbal to be classic autism (started ST at 20 months, didn't say his first word until almost 2 1/2), not verbal enough to be aspergers. If the criteria for Autism Spectrum Disorder that is being proposed for the DSM V was around back then, my son would have qualified as having ASD, no question.


After his diagnosis, he received intensive therapy (docs recommended 20-25 hours of therapy a week which we tried our hardest to meet) for several years. He is now very high functioning, but has some social and many sensory quirks. No way does he currently meet the criteria for ASD proposed for the DSM V.

So did the therapy "cure" his ASD? Does my son lose his diagnosis?

Is anyone else facing this issue?


After struggling with PCOS, IF, and multiple miscarriages, my family is complete.
DS 2005 and DD 2007
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Old 01-24-2012, 04:18 PM   #2
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Re: So if the DSM V is accepted...

I don't know if you 'lose' a diagnosis. I don't know if they are going to 'grandfather' it in. Are you asking for insurance purposes? Or school? Educational institutions in my area do not use the DSM, but have a list of of criteria you have to meet and impact on educational performance....
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Old 01-24-2012, 05:12 PM   #3
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Re: So if the DSM V is accepted...

I am so worried about this. My DD is a similar story. She was diagnosed as high functioning ASD at 2 1/2 but even just a year later (after 30ish hours of therapy each week) she has made a ton of gains. But her ASD is still there, just as real as before.

I am terrified that she will lose her diagnosis and then she will fail to make the normal gains that other kids make as they mature and then we will be seriously SOL.

Here is a really good letter from GRASP that outlines the issues with the new DSM V:

Please forward and post to whomever and wherever you deem it appropriate....

Dear all:

Thank you for the calls and the emails. We are having a positive effect, and with 10 months before the final version of the new DSM is due, we have a chance of reversing the Committee's intentions of significantly reducing the numbers of those who would qualify for a diagnosis. Please keep it up starting Monday morning.

Once again, the New York Times is speculating that the new criteria would qualify only 76% of those currently diagnosed with classic autism, 24% of those currently diagnosed with Asperger's, and 16% of those currently diagnosed with PDD-NOS. This means that:

• Children who do not qualify for a diagnosis under the new revisions will almost certainly be denied special education funding by their cities and states (after all, what school board will spend money on a child with no officialy recognized learning challenge?)

• Many adults on SSI, SSDI, or Disability who barely meet the criteria for these services may not have those services (and health coverage) anymore.

• We risk a possible return to the days of 1993 and prior where negative interpretations of behavioral differences were rather status quo.

The motivations behind these mind-boggling changes, are very much unclear to us. While the autism world in our current void of information is speculating a multitude of possibilities—the most dramatic being improper influence of insurance companies—we would urge people to continue pressing the DSM-V committee with the idea that the current committee members have experience only with the more-challenged end of the spectrum. None have any real experience with the end of the spectrum whose challenges are less physically-visible.

In addition to your talking points, and if you believe that the motivations are in any way fiscal, we urge you to remind the committee of how, in the big picture, the DSM-IV (which expanded spectrum diagnoses) saved us money. When you think of (though cannot estimate) the reduction in anxiety, anger, and depression, that was caused by legions of people finally understanding who they were—that they were wired differently, not rude . . . argue the mind-boggling cost of returning to those levels of anxiety, anger, and depression.


While in our last update, we conveyed the APA's statement that they were not taking comments at the present time, committee members and other organizations are now starting to respond through either internal or external media. In general you should feel you have every right to respond to these responses. The two most frequently seen tones (followed by our suggestions) are follows:

1. "Well, yes, your child may not qualify for specialized education under the new criteria, but please bear with us. Our hope is that this will improve services for all." They do not go on to explain how this is possible.

1R. Our no-brainer suggestion is to point out how senseless this response is. If they're admitting that fewer will qualify, how does this improve chances of "improving services for all." If your anger is getting the better of you, politely state that their response makes things worse because you feel your intelligence is being insulted.

2. These events are reviving the dormant "competition of suffering." Many people (who likely have some connection to a significantly-challenged fellow spectrumite) across the country in facebook posts, tweets...etc. are proclaiming "Good! Autism needs to be less confusing. These (AS or PDD-NOS) people never should have been brought in to the spectrum equation."

2R. Do not meet their hate with hate. The self-incriminating and emotionally-unhealthy nature of these attacks is the product of their being unable to grasp the complexity of the spectrum, or they are simply overwhelmed and underserved when compared with their needs. Yes, they may simply be bad people, but we won't know that (and we have bad people too). As they invalidate the experiences of others, do not match their ugliness. If you must respond, something appropriate would be akin to "I find it so sad that you would deny help to someone else simply because you still need help (embellish with detail that perhaps pertains to your experiences)." Show them, do not tell them, how ill they were in the moment of writing.

Once again our facebook page is the best place to dig up prior developments. And once again, keep the calls coming. Call the American Psychiatric Association at 703.907.7300. They will ask you not to call, but please keep calling. In addition, please email them at and (apologies: we misspelled the latter in our last correspondence).

Look for a survey from us soon too.

With massive thanks, we are

Yours, y'all,

Michael John Carley
Executive Director

The Global and Regional Asperger Syndrome Partnership, Inc.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277
Jamie, SAHM to Rosemary 5/08 and Faye 9/10
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Old 01-24-2012, 07:23 PM   #4
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Re: So if the DSM V is accepted...

I have been worrying about this as well. My oldest is 10. 7.5 years ago he was diagnosed with low functioning PDD NOS, SPD and a speech delay. He is now considered high functioning PDD NOS and SPD (he lost the speech delay diagnosis at 6). His last evaluation was at 7 through his school and at that time the evaluator felt he was on the line between PDD and Aspie. I will be taking him in for a more thorough evaluation soon. I just don't know what will happen if this makes it through. Where will we stand? Kearnan receives SSI, the money is not much and not particularly important but the medicaid helps cover his testing and therapy which is especially helpful considering he also has GHD and his hormones would cost $200 a month in co-pays. I home school him.
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Old 01-24-2012, 08:20 PM   #5
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Re: So if the DSM V is accepted...

My yds with autism will definitely still be diagnosed. Now, my ods could be diagnosed pdd-nos but it wouldn't help with insurance so we never did it. He has a full iep at his school with no official "diagnosis." We emphasize his sensory needs and his speech-type issues. We've had no problem, so far, keeping him with an iep. He's only in 1st grade now. he was in the early intervention program at 2 for speech delay, it improved greatly by age 4 but he has always been in the program. the interventions we use for him are the same you would use for an aspie but he does not meet criteria for an aspie.

We had an iep (or whatever it was in preschool) before yds was diagnosed and our insurance never did pay for anything for my ods with autism so the diagnosis itself never got us anything. I wouldn't really cared if it disappeared.
Suzi, working mama to my ODS(2004) , YDS(2006), DSD(2004) and married to the love of my life
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Old 01-25-2012, 06:46 AM   #6
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Idk but I have to say this son was diagnosed PDD NOS 10+ yrs ago and no one offered or told me of any kind of help or therapy. He's 13 now and not gotten any better. I WISH I had known there was help and had the money to pay for it! I'm heartbroken that at 13 the case manager says there isn't anything for him cause he's too old. We live in NY taxed till we are starving...and there are NO programs or help for autistic children.
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Old 01-25-2012, 07:42 AM   #7
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Re: So if the DSM V is accepted...

I live in PA where insurance has to cover therapy for ASDs. Having an ASD also qualifies you for medical assistance no matter what your income. So we used our primary insurance for therapies and then MA kicked in for anything that wasn't covered. DS is currently not in therapy, but at one point, just his OT was over $1000 each month. I don't even know how much his ST would have been if we ad to pay- he received ST 3 times per week.

Our school system was helpful to a point. Once we started the transition meetings for Kindergarten, they balked. Thy said his sensory issues, which they claimed previously never affected his education and therefore didn't qualify him for OT through their program, were going to make him fail in school. But since he scored so high on the cognitive tests, they couldn't help him. So he is in private school.

I don't know why it booths me so much. I guess since his speech has caught up, and the arm flapping/spinning has stopped, people don't believe he has issues. So when something happens b/c DS doesn't pick up on the social cues, or he is not sitting still or acting out b/c he hasn't gotten his sensory input, people think he is just misbehaving, when in reality he can't help it.
After struggling with PCOS, IF, and multiple miscarriages, my family is complete.
DS 2005 and DD 2007

Last edited by jac1976; 01-25-2012 at 12:58 PM.
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Old 01-25-2012, 09:16 AM   #8
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Re: So if the DSM V is accepted...

We kind of went through this with my son. They gave him a working diagnosis of PDD-NOS, but he doesn't fit the criteria. Anyway, he would be considered "recovered." Apparently, autism is just a collection of symptoms, and not an organic disorder. No one knows what causes these symptoms. So, its like saying that if you have a fever and a sore throat you have the flu. Well, maybe, but you could have a cold, strep, etc etc. If you give Tylenol and the fever goes down and the throat doesn't hurt, does that mean you cured the cold? No, you just treated the symptoms, does that make sense? So for our kids, they treated the symptoms, they don't fit the criteria for the symptoms anymore, but that doesn't fix whatever has been going on in the brain.

We've been going around and around with my ds, and finally are starting to get a few answers. Even though he clearly fit the autism criteria at 2-3 years old (moderate autism), it's not what he has. As he gets older and has more history to look at, they realize that he has something else, and apparently that happens to a lot of kids who did fit the criteria, but as they got older and matured and got therapy and so on, professionals are seeing that some of these kids have something else. For my son, we still don't have a name for it, and there may not be a name. His Psychiatrist said he needs his own case study. That he is clearly not OK, his problems are clearly organic, but they don't know what it could be because he is so different.

So what does that leave moms like us with? There is no name for what he has. The closest diagnosis they can come up with is PDD-NOS, so he has a working diagnosis of that for treatment. As we all know, services and funding are based on the actual diagnosis, and if you have a kid who is unusual enough to not get a diagnosis, do they just fall through the cracks? Its a tough place for all of us to be in, KWIM? The DSM needs to address this, or funding needs to be changed for kids who don't fall in these neat little categories.
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