By Dr. Bob Sears- TACA Physician Advisor 
With the upcoming proposed changes in the DSM – 5 diagnostic criteria for autism, many parents are worried that their child may no longer qualify for much-needed services. One 2009 study published in Pediatrics (1) revealed that almost 40% of children who were previously diagnosed with autism improved so much that they eventually no longer qualified for a diagnosis of autism. This finding baffled the mainstream medical community, as many autism researchers felt that autism is a permanent, lifelong diagnosis from which a child cannot recover. This has led some researchers to suspect that children who do recover probably didn’t have autism in the first place. Some will also claim that these children simply outgrew their autistic-like symptoms; they improved because they matured, not because they received intensive therapy. This group of policy-makers also feels that autism is being over-diagnosed.
It seems to me that a much more obvious explanation for these recoveries is that autism is treatable. Through years of intensive behavioral, developmental, educational, and medical therapy, children can recover. But instead of acknowledging this possibility, researchers are instead proposing to narrow the diagnosis of autism, so that only the most severe cases get diagnosed. Researchers have analyzed the new diagnostic criteria and reported their findings to the New York Times (2). According to their report, under the new criteria:
- 25% of children diagnosed with classic autism under the old criteria would not qualify for autism
- 55% of those with higher functioning autism would not qualify
- 75% of those with a diagnosis of Asperger’s would not qualify as being on the autism spectrum
- 85% of those with PDD-NOS would not qualify
The result of these new criteria is that fewer children will receive much-needed early intervention services, especially when the autism is mild and early (when early treatment is most important).
Over the past ten years, I have treated over 500 children with autism in my office. I have seen some recover fully or nearly so, I have seen many moderately improve, and I have seen some show minimal improvement. But it is my opinion that these children improve or recover due to intensive behavioral, developmental, educational, and medical therapy. They don’t just outgrow autism. Yes, a child will show some improvements on their own as they mature and get older. But I believe that aspect of their improvement is minor. Kids get better mostly through therapies, with a little help from the tincture of time.
This recovery does not change the fact that these children have or had autism to begin with. Back in the old days (where some of these policy-makers and researchers seem to still be living), when autism was rare, thought to be purely psychiatric, and no treatment options existed, the condition was considered permanent. But we now know differently. Autism is a treatable neurobiological disorder with several causative factors that involve many body systems. As we medically treat these factors, and provide years of developmental therapy, we heal the body and the mind.
If the proposed DSM – 5 criteria are approved, the definition of autism will be narrowed, and it will become more difficult to be diagnosed. This might seem like a good thing on the surface, as “autism” rates will decline sharply. But this will be misleading. In reality, it will mean that many children who really do have autism will no longer qualify for much-needed, life-changing therapies. These kids will be left behind. All children with autism, and their families, need many years of intensive multispecialty therapies. With this help, most children improve dramatically, and some recover. We cannot take that hope away.
I encourage parents and community to contact the American Psychiatric Association at 1-888-357-7924 to voice your concern.
References:
Moving Autism Forward by Team TACA 
This is a great article. I think it is also worth reminding everyone that it was once a medical “fact” that asthma was purely a psychiatric issue with no real treatment options.
fabulous article giving some compelling numbers. this along with a video published on twitter http://www.ageofautism.com/2012/02/no-more-pdd-a-video-glimpse-post-dsm-5.html makes a dramatic statement about this upcoming changes.
Great tidbit of info – where can you find that fact about asthma? Was it listed in the DSM at one time?
Ginger, I am not sure what is or has been in the DSM. But you can search about the history of asthma online and read up on it. In the past they thought it was entirely in the mind. Even a 2008 book “NMS National Medical Series for Independent Study – Psychiatry 5th edition” speaks about the past belief that asthma was psychological. Then they go on to talk about how they know that is not the case now, but how stress still plays a role in attacks. They even go so far as to throw out the “overprotective mother” claim. Yes, in a 2008 book! (That one is searchable on Google books, is why I referenced it.) I would post a link but it won’t work. If you go to Google and search “asthma once thought to be a psychiatric” (without the quotes) then it is currently the 2nd result on the search page.
Here is a quote from a UK article about who decides whether an illness is mental or physical: http://www.meactionuk.org.uk/ScotME_04_WHO_decides.htm
“Multiple Sclerosis (once known as creeping paralysis) was once considered a mental disorder caused by female hysteria and the removal of women’s ovaries or wombs was not unheard of. This view meant little or no extensive research was conducted into the mysteries of MS, until very recent times. This led to the misguided conclusion in 1920 that men were more susceptible to MS, because women were mistakenly diagnosed as suffering with hysteria. Only recently has research shown MS to be neurobiological rather than psychological, resulting in a very different attitude towards MS patients. Other disorders once considered psychiatric: Parkinson’s disease, asthma, and epilepsy – to name a few.”
Doctors have a long history of saying things are mental illness, when they don’t know how to explain them. If they don’t yet know the physical cause, then many of them decide it must be mental.
Agree with Debbie. And add: the same with fibromyalgia and chronic fatigue syndrome. Regarding ‘several causative factors,’ tuberculosis was, not that long ago, thought to be inherited. We still have no definitive cause. I so wish everyone could read this and understand his points….and would call and flood Am. Psych. Assn.
@Amy and Debbie: Well stated. Thank you. I am terrified that those who desperately require the necessary services – often too expensive and extensive for many parents to afford – will not be cut off due to legislators and “authorities” who want to save a few dollars by denying those services. Absolutely appalling.
Many thanks to Dr. Sears!
When are the propsed changes due? Parents are very nervous, so it would be helpful to know when they will possibly be coming. I am the parent of a child who is largely recovered and I assure you, she had PDDnos. Now, she has sensory issues, but would likely not qualify even under current criteria. 8 years of intensive traditional and biomedical treatment and alot of prayer.. a walking, breathing, miracle.
I have 3 Autistic kids. 3 yr old twins and a 5 year old. Early Intervention have been angels to our family. All 3 of them can’t talk and I don’t know what I’d do without help! This is a scary thing for our family.
I contacted the American Psychiatric Association to voice my concern but they did not take note of my call. I went to the DSM-5 web site but they are not open to any comments until April. What else can be done?
What say we inundate them with calls and contact reporters to interview the ones answering the phones? ? I would like to know what else can be done. Although we have not been able to afford to do much of anything (except dietary intervention) w/our AS child, it would be a crying shame to pull the rug out from others who might have otherwise been able to get some help once diagnosed.
I agree that this would be disastrous if the percentages are correct. Ask Asperger’s adults to tell you. This sounds like a case of the “Ivory Tower” making the decisions without involving the people that know, personally, the down side of no therapy or help.
Having also worked with children with autism and Asperger’s Syndrome, I can see how people ignorant of the subtle, but very disabling, differences would seem not to need the help. Once the child or adult becomes known to a teacher or employer, the differences show up markedly and, without help learning how to handle and adapt these differences to succeed in life, they may be later much more expensive to care for than the early intervention would cost.
I have a child with pure autism .diet treatment therapy and many hours of developmental effords have recovered him 85% plus .These children do recover ,But like encephalaires they do need immediate treatment before they become vegetables ‘.The low makers haven,t have an autistic child of their own Ana
Proposed changes to DSM – 5 are proposed to launch in May 2013.
Please check the TACA website at our DSM update link http://www.tacanow.org/dsm-v/
Lisa