Autism, by any other name….How the new DSM-5 may affect people with ASD.
By Holly Bortfeld
Autism is a “spectrum disorder” of Pervasive Developmental Disorders. The DSM includes PDD-NOS, Autism, Asperger’s, CDD and Rett’s Syndrome. One could also add conditions like ADD and ADHD, which include spectrum features and often respond to similar treatments.
I have two children with Autism Spectrum Disorder. One has a diagnosis of Asperger’s Syndrome. She fits the criteria to a tee. She’s bright, quirky, verbal, able to advocate for herself, in college and will one day be able to support herself and live alone, hopefully.
My other child has a diagnosis of autism. He fits the criteria too. He once received the diagnosis PDD-NOS, which we quickly learned was merely the doctor’s way of trying not to scare us with the dreaded “A” word. Unfortunately, it also disqualified him for services, forcing us to go to another doctor to get the autism diagnosis.
The DSM – Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association – is like a giant catalog of diagnoses. It’s the “bible” that lists the criteria for each disorder.
DSM-IV-TR is the current version in use now. Today it includes PDD-NOS, Asperger’s, and Autism. The most notable diagnostic criteria difference between kids with Asperger’s and Autism is that there was no marked delay in language early in life. I know a lot of kids with Asperger’s diagnoses that did have a marked delay. The criteria isn’t perfect, to be sure.
Asperger’s Syndrome does have diagnostic differences from “autism” but in 2013, the new version – DSM-5 will remove all the variations and leaving us with just one diagnosis: Autism Spectrum Disorder.
http://www.dsm5.org is the website for the next version which is to be published May 2013. The proposed content, however, is already up on the website. I give you, Autism Spectrum Disorder, circa 2013….
Autism Spectrum Disorder
Must meet criteria A, B, C, and D:
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
There are also 3 new “Severity Levels” for ASD.
Level 3: ‘Requiring very substantial support’
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.
Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.
Level 2:‘Requiring substantial support’
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.
Level 1:‘Requiring support’
Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.
What if One Size does not fit all?
Does your child fit the new criteria? Or if you are an adult with ASD, do you? What if those with Asperger’s Syndrome do NOT meet the new criteria above, as I suspect many with Asperger’s wont, then what are their options?
Try these diagnoses on for size:
A 05 Social Communication Disorder
T 00 Borderline Personality Disorder
T 02 Avoidant Personality Disorder
T 04 Antisocial Personality Disorder (Dyssocial Personality Disorder)
These are just a sampling. See http://www.dsm5.org for more information.
Pros and Cons
Of course, there will be good and bad things that will come out of these proposed changes. Some better than others.
The pros of just one diagnosis
- Services open to all. Asperger’s does not qualify for services in many states. Neither does PDD-NOS, so having an “ASD” diagnosis will open up services and funding for many children who are not currently receiving help.
- Severity levels in the diagnostic criteria may help schools and providers develop more targeted programs. Even though many parents will tell you that their child is diagnosed with “High Functioning Autism” there is really no such diagnosis. There is autism. That’s all. Today’s “autism” has no measure of severity in the diagnostic criteria, other than to move them to PDD-NOS or Asperger’s.
The cons of just one diagnosis
- Many parents or individuals will fear the “autism” stigma and not get a diagnosis, which means no services
- Epidemiological nullification. If we remove all of the other diagnoses, all epidemiological data that has been gathered goes out the window. You cannot compare apples to oranges. Some people in the community believe this is the true intent of this change.
- When adding kids with much higher functioning skills into the “ASD” pot, there is a real risk of the more severe kids getting overlooked as some may see the “new” autism as merely quirky instead of in dire need of constant supports and services.
- Some may read these criteria only as deficits, instead of strengths. There are many jobs where repetition and extraordinary focus are bonuses, but the wording of the new criteria reads as if everything about autism is inherently bad.
- What will this do to insurance coverage, which is based on diagnosis?
- Even though schools are not supposed to group kids by diagnosis, but instead by need, they do it all the time. Will they start dumping kids with Asperger’s into the typical “Autism” programs?
- Will the changes of diagnostic criteria change any testing or treatment approaches?
- Will states and agencies change service eligibility from “An autism diagnosis automatic qualifies you for eligibility”, to “prove a qualitative impairment” as SSI for adults or California’s Regional Centers already do. If so, this will be horrific for most with autism since every agency WILL fight parents and many parents are not willing or able to fight these changes properly.
- Medicaid and SSI may exclude on new severity levels.
- Insurances (private and state) won’t pay for ABA for those without an autism diagnosis.
- Kids without a diagnosis won’t qualify for state mandates of class size restrictions or services.
- The new DSM-5 criteria for autism include the phrase, “not accounted for by general developmental delays” but in toddlers, this is too hard to quantify and will disqualify many for EI.
From SafeMinds: DSM-5 – Concerns and Questions From the Autism Community – January 25th, 2012
Allen Frances’ articles:
DSM-5: You’re Still Autistic. You’re Just Weird. You We’re Not Sure About. Call Us Tomorrow. by Anne Dachel
The One Question We Should Be Asking About the New Autism Definition by Judith Warner
From the http://www.dsm5.org website: “DSM-5 Draft Criteria Open for Final Public Comment May 2nd through June 15th, 2012. This commenting period marks the third and final time DSM-5 draft criteria will be available for your feedback. Following this period the site will remain viewable with the draft proposals until DSM-5’s publication.” You must register before you can comment.
Child Brain.com (The Pediatric Neurology Site): http://www.childbrain.com/pddq3.shtml