Changes in DSM-5 Autism Definition Could Negatively Impact Millions
Autism organizations concerned that autism diagnostic changes will jeopardize services, impair tracking, and disrupt research around the globe.
WASHINGTON, DC – Proposed changes to the diagnostic criteria for autism spectrum disorders in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders – 5 (DSM-5) will potentially disrupt appropriate and necessary services to hundreds of thousands of individuals in the US, hamper the ability to track the numbers of people with autism, and interfere with efforts to establish biological causes of autism.
“The proposed criteria make it significantly more difficult to qualify for an autism spectrum diagnosis and they completely eliminate the categories of PDD-NOS and Asperger’s Disorder,” stated Wendy Fournier, National Autism Association President. “In a well-intentioned desire to improve the specificity of an ASD diagnosis, the new criteria may, in fact, go too far and create unintended consequences. It is critically important that any diagnosis address all the symptoms of an individual and allow them the supports they need.”
The new criteria, rationale and previous criteria are available at: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94
Currently, the federal government is spending millions of dollars to track prevalence of ASDs in 11 states; the 2000 birth cohort is due out this year. The Individuals with Disabilities Education Act (IDEA) requires schools to report the number of students with autism annually. Both sets of data have shown dramatic increases in autism spectrum disorders. One in 110 children in the US is now affected by autism compared to one in 10,000 in the early 1980’s. By significantly changing the criteria for diagnosis, the new DSM-5 will impair the ability of public health officials to compare future rates of autism spectrum disorders to past rates, since the definition will have changed. Accurate projections of trends in autism rates are critical to planning educational interventions, Medicaid and adult services. "By analogy, if the medical community chose to only count melanoma in the future instead of all types of skin cancer, it would look like skin cancer rates had gone down, even though other types were still present and needed treatment,” said Ginger Taylor, Canary Party Executive Director.
In addition, incidence and prevalence are critically important to investigating environmental causes of autism. “Toxic exposures to the general population change over time and having good consistent epidemiology allows researchers to judge the likelihood of a toxin being involved in autism,” stated Eric Uram, SafeMinds Executive Director. “The APA’s new criteria should add a specific mechanism to map the old diagnoses onto the new ones in order to allow researchers to compare new and old datasets. We also would like to see the APA address the issue of regressive autism by including age of onset as part of the criteria. The etiologies of infantile vs. regressive autism may be entirely different, but the new criteria do not distinguish them in any way.”
A primary concern for parents is the likelihood that many children on the autism spectrum may not be diagnosed under the new criteria, thereby depriving them of appropriate early intervention and treatment. “Even in the states that have passed autism insurance legislation, the tightening of the criteria for autism may exclude children who need treatment with Applied Behavior Analysis,” said Mary Holland, Managing Director of the Elizabeth Birt Center for Autism Law and Advocacy.
“Our organizations advocate that the criteria should err on the side of over-diagnosing rather than under-diagnosing since no harm is likely from providing educational services to a young child, but great potential can be lost by not providing treatment.” Early intensive treatment improves outcomes for children with autism, making it highly cost-effective for tax-payers when compared to providing adult services.
"The autism community strongly recommends that the proposed DSM-5 autism spectrum disorder diagnostic criteria be revisited with these concerns in mind," concludes Sallie Bernard, President of SafeMinds. “These issues are too important to remain unresolved.”
For more complete documentation of community concerns and questions, please visit www.safeminds.org. If your organization would like to sign onto these concerns, please contact [email protected].
They are trying to reduce the autism tsunami by changing
the diagnostic criteria...and cut spending by not providing the services to our children in need.
Posted by: oneVoice | February 01, 2012 at 07:28 PM
what is the latest data on the true incidence & prevalence? I recently read that the 1 in 110 quote is based on kids who turned age 8 in 2006...
Posted by: laura | January 27, 2012 at 05:49 PM
My understanding was; That the DSM-4 did not lump aspergers, PDD-NOS and autism together.
But for years now, there has been talk on doing just that in the next upcoming DSM-5. Does anyone know if my understanding of this is correct???????
My next question is;
This article says they are going to eliminate apsergers and PDD-NOS. What does that mean? Eliminate these dignosis period?
or do they just mean getting these two dignoisis out of the autism dignosis, and no more talk of autism spectrum?
My next question is:
If the answer to my second question is eliminate apsergers and PDD-NOS dignosis all together??? Does that mean that they will then just start giving people dignosis that read like this;
Patient has tourettes, myclonic jerks, absentee seizures, grand mal seizures, OCB, attention deficit disorder, hyperactivity, depression, mania at times, delaid language --- ect.???
Posted by: Benedetta | January 27, 2012 at 01:44 PM
how do we appeal / repeal this, do they give a reason? how do we fight this? Petition congressman, and get a congressional hearing?
Posted by: DVazquez | January 27, 2012 at 01:41 PM
"We also would like to see the APA address the issue of regressive autism by including age of onset as part of the criteria. The etiologies of infantile vs. regressive autism may be entirely different, but the new criteria do not distinguish them in any way.”
This is so important because some of our children regressed at age two, as my son did, and others even later but were not given the CDD diagnosis. I believe that regressive autism (or CDD) is a different disorder regardless of the age of onset, but it may very well be subsumed into ASD.
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=96#
I wish they would stop lumping all children under the same spectrum umbrella as if they all had exactly the same disease.
Posted by: ATSC | January 27, 2012 at 02:09 AM
Dear Parent:
We are seeking volunteers to participate in a research study about what it’s like to grow up with a sibling who has autism. Do you meet the following requirements?
1. Are you the parent of at least two children?
2. Does one of your children have an autism spectrum disorder?
3. Does one of your children not have an autism spectrum disorder?
4. Is your child without autism between the ages of 8 and 18 years?
If so, please consider volunteering by clicking on the link below. The survey will take approximately 45 minutes to complete and may be taken at a computer of your choice that has internet access. The first part of the survey will be taken by you. The second part will be taken by your child that does not have an autism spectrum disorder.
If you would like to volunteer to take this survey, please click on https://www.psychdata.com/s.asp?SID=144893
and read the consent information at the beginning of the survey. We will not collect your name or that of your child. However, there is a potential risk of loss of confidentiality in all email, downloading, and internet transactions.
If you have any questions, please contact Kathy DeOrnellas, Ph.D., Principal Investigator at [email protected] or 940-898-2315 at Texas Woman’s University.
Thank you,
Kathy DeOrnellas, Ph.D.
Posted by: Amanda | January 26, 2012 at 11:46 PM
"...By significantly changing the criteria for diagnosis, the new DSM-5 will impair the ability of public health officials to compare future rates of autism spectrum disorders to past rates, since the definition will have changed..."
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I don't think the intent is to impair the ability of public health officials to compare past and future rates.... because those guys know full well that the incidence of autism is literally exploding.
What they want to impair, is the ability of the general public to figure it out. That's the whole point of this ruthless charade, and it's hardly the first time that the medical community has tried to pull a fast one.
On February 8th of 2007, a CDC estimate put the incidence of Autism Spectrum Disorders (ASDs) at 1 in 150. As bad that number was, another report released later in the same year (http://www.vacinfo.org/1in67.pdf) showed that the CDC wasn't exactly coming clean back in February of 2007. That 1 in 150 stat was actually based on statistics from children born in 1994... 13 years earlier!!
The rate according to the follow up report, was more accurately being pegged as high as 1 in 67, and potentially even as high as 1 in 38 in boys!
If the TRUE incidence was really that high back in 2007, then it's hardly a surprise that they're so desperate to obscure what the incidence must have grown to today
Posted by: Barry | January 26, 2012 at 11:45 PM