Over the last few weeks, a tempest in a teapot has been brewing within the autism community with respect to the upcoming Diagnostic and Statistical Manual of Mental Disorders referred to as the DSM-V due for release in May 2013. The task force has decided to group autism, Asperger Syndrome and PDD-NOS into one category under the heading of “Autism Spectrum Disorder” and to tighten the criteria for diagnosis.
The Internet is littered with fear mongering comments claiming that the changes being made are only being done “to get rid of challengers to [anti-vaccine and biomed] authorities.” Others are banging the gong and posting desperately that the changes will “strip our kids of their human rights to treatment and acceptance of who they truly are.”
What many diagnosed and self-diagnosed with Asperger Syndrome would like the general public to believe is that Asperger Syndrome will no longer exist and that thousands of children, youth and adults will be without services and supports once the DSM-V is published. More than a few online petitions are making these sorts of claims.
One online petition states that “If there were not [sic] therapies — occupational, speech, physical — for these children, they would not be high-functioning, which is what will happen to them when the insurance companies take away the right for them to continue because their diangnosis [sic] will “change” under the DSMV [sic].” It ends with: “Please sign and share and don’t let them take away their rights to have services, which is ultimately what will happen if this is changed.”
Comments such as “I know what it is like to live with Asperger’s and for them to say that it does not warrant a diagnosis is an outrage!” come from failing to be properly informed on what the changes will mean to someone who currently has a diagnosis of Asperger Syndrome, PDD-NOS or Classic Autism.
Comments such as “[i]t is very important for these kids to get the help they need and eliminating a diagnosis from a child does not remove the disorder” underscores the failure of parents to understand that no one has stated that the changes to the DSM-V are intended to remove the disorder from the individual diagnosed with Asperger Syndrome.
No one is taking away anyone’s right to have services. This is not what will ultimately happen with the new changes to the DSM-V. With the tightening of criteria which must be met in order to be given a diagnosis of Autism Spectrum Disorder, 76% diagnosed with classic autism, 24% diagnosed with Asperger Syndrome and 16% diagnosed with PDD-NOS will be reclassified as having Autism Spectrum Disorder. This in no way means that those who are not reclassified are doomed to live without services or supports. What it means is that those who do not meet the Autism Spectrum Disorder criteria may meet other diagnostic criteria found in the DSM-V, leading to more accurate diagnoses and more appropriate services and supports for those who do not meet the Autism Spectrum Disorder criteria.
Asperger Syndrome and PDD-NOS aren’t the only categories in the DSM-V that have seen changes in their criteria. Criteria changes have been made for such diagnoses as Separation Anxiety Disorder and Tourette’s Disorder. Criteria changes have been made for such diagnoses as Dissociative Amnesia, Anorexia Nervosa and Bulimia. They’ve been made for Bipolar Disorder and Major Depressive Disorder, and they’ve been made for Post Traumatic Stress Disorder (PTSD) and Acute Stress Disorder.
For those self-diagnosed with Asperger Syndrome who have publicly touted that the original diagnosis they received from a licensed and accredited medical professional years ago was incorrect, perhaps it’s time to revisit those diagnoses if you were diagnosed with Schizotypal Personality Disorder, Antisocial Personality Disorder, Borderline Personality Disorder, Obsessive Compulsive Personality Disorder or any number of personality disorders as they, too, have undergone criteria changes.
And before anyone says that no other disorders are being reclassified in the DSM-V, please note that Hypochondriasis is being reclassified as Illness Anxiety Disorder so it’s not just Asperger Syndrome and PDD-NOS that are being reclassified.
Of particular interest is the fact that there are additions to the DSM-V and these additions include such disorders as Late Language Emergence, Specific Language Impairment, Social Communication Disorder and Voice Disorder.
The fact of the matter is that there’s a lot of catastrophizing going on in the autism community when it comes to the DSM-V. For those who are interested in knowing what changes, additions and deletions can be expected in the DSM-V as it pertains to infants, children and adolescents, a list of changes, additions and deletions can be found on the American Psychiatric Association DSM-5 Development website.
It’s time for the autism community to calm down and realize that changes are necessary in order to more accurately diagnose individuals who have a disease, disorder or difference. In tightening up the criteria, services and supports can be more closely geared to address the needs of those with a diagnosis, regardless of what that diagnosis might be.
Elyse Bruce
Founder and Creator
MIDNIGHT IN CHICAGO
RECOMMENDED READING
Proposed Changes To Autism Definition May Mean New Diagnoses For People With Asperger’s
New Definition Of Autism Will Exclude Many, Study Suggests
American Psychiatric Association DSM-5 Development Website
January 23, 2012 at 9:25 AM
While I agree with the criteria, the problem is that here in America.. it will make it harder for people to obtain services. Our system is already completely overwhelmed and there are waiting lists and many of these depend on your exact diagnosis. When these diagnoses change, people will ultimately lose – by either not being covered until they figure out HOW to cover this, or by starting all over going through all the motions and applying for services. Nothing here comes free. This could also affect services such as our SSI system, where we might have to apply all over again, which in the mean time means that money will be taken away from those who desperately need it until everything is settled again and figured out. So, in some places, it IS a very very bad thing.
January 23, 2012 at 9:57 AM
I fear the impact of these changes are going to be detremantal to children with a new diagnosis and recieving services.. Or children who have made great strides & losing services causing them to regress. My son will barely slide by with then new criteria…It breaks my heart to think of all the children who will fall in the cracks..with wrong labeling and diagnosis..all be medicated wrogly because of this…they will recieve no services..No IEPs…be mainstreamed on meds and forced to ride in regular school buses with no added security for saftey for the students and protection from peers who don’t understand why said child is so “wierd”. Not to mention…high funtioning children still experience a great deal of sensory stimuli overload and what kind of effect with the new criteria have on the environment in which the children left behind will be forced to try and learn…with no coping aids…this kids wll fall into a horrid cycle and be held to the same standards as the NT students…no safety net…disturbance and overload equaling trips to the principle..not a quiet area..or extra support from a one on one. A tragedy is what I call this new criteria for an Autism diagnosis.
January 23, 2012 at 1:15 PM
I live in New York. I don’t know how most people’s insurance works, but mine works on need. My triplets had to have tests done to qualify for services for speech, occupational therapy, physical therapy, etc., and once the child no longer needed that service, they stopped getting it. They didn’t just get services because they had a diagnosis.
At school, my son didn’t need speech 5 days a week, but they put him in it because that is what NY State mandated for the diagnosis. So he was being pulled out of class for no reason. That should have worked the same way – the number of sessions should have been based on need.
The only service that my children were offered because of their diagnoses was ABA, only in Early Intervention (we did not go that route.) ABA will be impossible for parents to have covered if the child no longer qualifies for the diagnosis.
Will doctors be required to change the diagnosis for children who are already diagnosed?
And, to be honest – I’m confused! Maybe someone can clarify for me where they have seen the changes that I keep reading about elsewhere. The only change I see on the DSM-V website is:
“Autism Spectrum Disorder – reinstated examples in criteria to add clarity and changed wording in most criteria to add clarity; added severity”
January 23, 2012 at 3:48 PM
With added clarity as it pertains to Asperger Syndrome and PDD-NOS will come tighter criteria. The fact that this will include severity will also help in securing appropriate services and supports for individuals being diagnosed.
There are those who mistakenly believe that because the diagnosis will now be referred to as Autism Spectrum Disorder that Asperger Syndrome will no longer exist. Asperger Syndrome was being diagnosed without being part of the DSM from before the DSM existed until now. It was added to the DSM-IV TR in 1994. It didn’t just start being diagnosed in 1994. That’s something important to keep in mind when discussing this situation.
As to whether doctors will have to change a diagnosis for children who already have a diagnosis, it would be prudent for any licensed and accredited medical practitioner to revisit a diagnosis on a regular basis to ensure that the original diagnosis most accurately fits the symptomology as it presents itself in the present. With the tightening of criteria for a number of disorders in the DSM-V along with the addition and renaming of others, it’s possible that a new diagnosis may be a better fit than the previous diagnosis.
January 23, 2012 at 10:23 PM
Wow, well written and much more understandable than all the internet chatter that’s been all over my screen. Not that I was overly concerned anyway, they revise many disorders all the time. Thank you for clearing the clouds from my head.
January 24, 2012 at 5:54 AM
I have just one question to ask–kind of off topic. But where do these petitions go? I see them all the time and I have to ask and usually the person who creates it, doesn’t have an answer. Signing a petition online isn’t going to do anything–if there isn’t an end date and a person it goes to in the end. Those in charge of the reviewing committee or whomever makes the decisions about the proposed changes, aren’t going to go online looking for petitions, after all. They are presumably busy folks… so who’s to say that these petitions will even make a difference anyway?
Aside from that, even if your child ends up “undiagnosed” because they no longer fit the Asperger’s Syndrome criteria, if said child does have a need, yes–the person involved in originally diagnosing the child or a subsequent professional should be consulted for updating that diagnosis. My children have been reevaluated every three years since their original diagnoses; it just makes sense as they make progress or new problems crop up. The exception to that is my youngest. He hasn’t been reevaluated by a neuropsychologist every 3 years but he’s recently been rediagnosed. When he was first evaluated, he was given “PDD/NOS” becuase he was “too social” to be classical autism. Of course, he’d had years of intensive early intervention to draw out his social side by the time he was evaluated (my fault he wasn’t evaluated sooner). The doctor did not take that into consideration (or doctors, actually.. there was a panel at the Children’s Hospital in Boston, MA). His most recent diagnosis is classical autism as of this month. I don’t know how to feel about that, bluntly, because to me, that means he hasn’t made as much progress as I thought he had! LOL… Oh well, he’s my Bboy and I love him… he’ll mature at his own speed.
Sorry for the tangent stuff…
January 24, 2012 at 7:25 AM
Online petitions are largely ineffective for a number of reasons. As you said, if there is no “end date” for when signatures will no longer be accepted and there is no indication as to who or what organization will be receiving the petition, the petition has no teeth whatsoever. What’s more, petitions in real life require that the person adding his or her name to the petition sign his or her name, print his or her name, provide a physical address and, in some cases, a telephone number as well. This means that those who have signed the petition can be contacted by the recipient(s) of the petition for verification they actually signed the petition.
As for you Bboy’s diagnosis and your concern that he hasn’t progressed as far as you had thought, my suggestion is that you not beat yourself up over how far he may or may not have come. Were it not for your efforts, he would not be as advanced as he is and that’s something to keep in mind on the more difficult days you and he may have.
Thanks for your excellent comments about regular re-evaluations by medical professioals.
January 26, 2012 at 2:44 PM
Elyse, thank you for the response. I absolutely agree what you have to say on the issue of these petitions and the idea that the proposed changes are nothing to get overly concerned about. They can call it what the want but my oldest son, T, who is currently diagnosed with Asperger’s… but his name is Thomas– we don’t call him by his diagnosis, ya know?