Should Asperger Syndrome and PDD-NOS be taken out of the new DSM-V?
y: Britt Collins, M.S., OTR/L
Some of you have read about the latest change in the upcoming DSM-V. Recently the American Psychiatric Association (APA) proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders. They are recommending that Asperger Syndrome be taken completely out of the DSM-V. If this revision is completed, then the condition will be considered under the category of “autism spectrum disorders.” Asperger’s and pervasive developmental disorder not otherwise specified PDD-NOS will no longer be a subcategory of the “autism spectrum disorders” and everyone will fall just in the one category of this.
[The term pervasive developmental disorders not otherwise specified (PDD-NOS) refers to a group of developmental conditions that affect children and involve delays or impairments in communication and social skills. Autism is the most well-known of the pervasive developmental disorders, so PDDs also are known as autism spectrum disorders. PDDs also include Asperger syndrome and two less common conditions called childhood disintegrative disorder and Rett syndrome (which is only found in girls). Typically, PDDs are first diagnosed during infancy, toddlerhood, or early childhood when it is not clear what exactly the child’s diagnosis is. All pervasive developmental disorders affect communication and social skills, as well as cognitive skills and behavior. All PDDs have things in common, but each has specific characteristics that set it apart from the others.] http://www.kidshealth.org
In1994 the APA first recognized Asperger Syndrome as a subcategory of autism and is has different criteria to meet that diagnosis.
Back in about 2004, I remember going to a luncheon with a presentation by a neurologist. She presented information about how Asperger Syndrome was its own diagnosis and was not “high functioning autism.” It had different criteria than autism and was needing its own recognition. This brought up a lot of talk about the differences between autism and Asperger’s and which is the appropriate diagnosis. What is the difference between having a diagnosis of PDD-NOS, autism and Asperger Syndrome? So if Asperger syndrome is going to be part of the autism spectrum disorders, is there still a particular process on differentiating between autism and Asperger’s.
Many children that I have worked with, seem to get a diagnosis of PDD-NOS when they are young, then get the autism diagnosis, have intense treatment (OT, Speech, Behavior, Diet, Sensory Integration etc) and then as they get older, they look like high functioning autism or maybe even Asperger’s. Does this mean this “autism” diagnosis is constantly changing? Or is it because they got the appropriate intervention at the right time? I have also worked with children who are more severely autistic and they barely get communication skills, need maximum assistant for daily functional skills, always have to be in a special education classroom and seem to have extreme behavior and sensory issues that are difficult to keep under control.
One article reads “The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.” A Powerful Identity, a Vanishing Diagnosis by Claudia Willis published Nov 2, 2009.
What does all of this mean? It is NOT black and white!
I have listed here the 2 criteria for autism and Asperger’s from the DSM-IV.
DSM-IV criteria for a diagnosis of Autism
Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain’s normal development of social and communication skills.
I. A total of six (or more) items from heading (A), (B), and ©, with at least two from (A), and one each from (B) and ©:
A Qualitative impairment in social interaction, as manifested by at least two of the following:
- Marked impairments in the use of multiple nonverbal behaviors such as eye-to- eye gaze, facial expression, body posture, and gestures to regulate social interaction.
- Failure to develop peer relationships appropriate to developmental level.
- A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people).
- A lack of social or emotional reciprocity.
B. Qualitative impairments in communication as manifested by at least one of the following:
- Delay in or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).
- In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
- Stereotyped and repetitive use of language or idiosyncratic language.
- Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.
C. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
- Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.
- Apparently inflexible adherence to specific, nonfunctional routines or rituals.
- Stereotyped and repetitive motor mannerisms (e.g. Hand or finger flapping or twisting, or complex whole-body movements).
- Persistent preoccupation with parts of objects.
II. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
A. Social interaction.
B. Language is used in social communication.
C Symbolic or imaginative play.
III. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.
Source: Diagnostic and Statistical Manual of Mental Disorders; Fourth Edition
According to Wikipedia, Asperger syndrome is an autism spectrum disorder, and people with it therefore show significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported. These signs of Asperger’s usually shows after the age of 3 when a child is exposed to same age peers and parents notice the lack of social skills.
Asperger syndrome is named after the Austrian pediatrician Hans Asperger who, in 1944, described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy. Fifty years later, it was standardized as a diagnosis, but many questions remain about aspects of the disorder. For example, there is doubt about whether it is distinct from high-functioning autism (HFA); partly because of this, its prevalence is not firmly established. The diagnosis of Asperger’s has been proposed to be eliminated, replaced by a diagnosis of autism spectrum disorder on a severity scale.
People with Asperger have problems with language in a social setting.
- It may be difficult to choose a topic of conversation, their body language may be off, and it may be difficult for them to recognize that the other person has lost interest in the topic.
- They may speak in a monotone, and may not respond to other people’s comments or emotions.
- They may have difficulty understanding sarcasm or humor.
Other symptoms may include:
- Problems with eye contact, facial expressions, body postures, or gestures (nonverbal communication)
- Singled out by other children as “weird” or “strange”
- Difficulty developing relationships with children their own age
- Inability to respond emotionally in normal social interactions
- Not flexible about routines or rituals
- Lack of showing, bringing, or pointing out objects of interest to other people
- Do not express pleasure at other people’s happiness
- Preoccupied with parts of whole objects
- Repetitive behaviors, including repetitive behavior that injures themselves
- Repetitive finger flapping, twisting, or whole body movements
- Unusually intense preoccupation with narrow areas of interest, such as obsession with train schedules, phone books, or collections of objects
“It’s important to note that, unlike kids with autism, those with AS (Asperger’s) might show no delays in language development; they usually have good grammatical skills and an advanced vocabulary at an early age. However, they typically do exhibit a language disorder — they might be very literal and have trouble using language in a social context.
Often there are no obvious delays in cognitive development or in age-appropriate self-help skills such as feeding and dressing themselves. Although kids with AS can have problems with attention span and organization, and have skills that seem well developed in some areas and lacking in others, they usually have average and sometimes above-average intelligence.” http://www.kidshealth.org
According to Volkmar and Wiesner (2009), cognitive development in autism is unusual. Children with autism do better on motor-perceptual tasks and motor abilities and don’t do as well with tasks that require social skills or abstract thinking. They also struggle with the use of symbolic information and their verbal abilities are limited (Prior and Ozonoff, 1998). Many times their language sounds very robotic and they can perseverate on many things (i.e. repeating lines from a movie over and over again) which causes difficulty having social interactive conversations. People with autism tend to have IQ’s in the lower intellectual abilities but this also varies from child to child.
People with Asperger syndrome, also have difficulty with social skills and motor skills, but they are usually strong in their verbal skills. They also tend to have higher IQ’s. Most parents don’t notice their child has issues with Asperger’s until exposed to same-age peers (around preschool) and then the social issues tend to arise. Autism is again diagnosed with signs showing up before the age of 3, though some children are not officially diagnosed until the age of 5. (Volkmar and Wiesner, 2009).
Most of the children I see are younger, maybe just diagnosed with autism or within a few years of their diagnosis and are starting out in their journey of autism and what all of that entails. Therapy, doctors, diets, interventions, products etc. If this one resource says that children with autism typically have good motor-perceptual skills, but what about these kids that come to see me that have a diagnosis of autism and they have poor motor skills. Some of this is due to poor body awareness and tripping and falling a lot which is actually a sensory issue (proprioception and vestibular issues) which then makes us look at how many children with autism ALSO have SPD or sensory issues. The few older children that I see come through my doors with a diagnosis of Asperger syndrome have also just gotten this diagnosis but the child is closer to 9 or 10 years old. Many times these parents have suspected something has been going on with their child for awhile, maybe they have done well academically, but have social skill difficulties, sensory issues, some obsessive compulsive behaviors, picky eaters and more. Many times this older diagnosis of Asperger’s is a relief to the parents that something truly is going on with their child and they haven’t been dreaming this up for the past 7-9 years.
One mother’s response to this situation is:
[I personally can’t understand what motivates the APA in making this change. If every child with autism were like my son John and [Roy]Grinker’s daughter, both of whom have Asperger’s, autism wouldn’t be such a disaster for this country. The truth is, classic autism is so devastating that parents don’t have the time to write opinion pieces. Those parents don’t have children who can carry on conversations about having autism like Grinker’s daughter can. Many autistic children I know don’t talk at all. Some are still in diapers as teenagers. They’re a danger to themselves and to others. They’re in need of constant care and supervision. Many of these children have severe health problems associated with their autism like seizures and bowel disease.
I really fail to see how putting my son, who drives, has normal speech, and is great on the computer in one group called autism, will do anything to address the autism crisis in this country. The medical community has no answers when it comes to autism.
Millions of dollars are wasted in pointless studies while the cause, treatment, and cure remain unknown. Does this DSM change do anything to stop the autism epidemic? Will it provide any answers for parents? Will a single child be helped?] Anne Dachel – Editor of Age of Autism.
Isn’t this diagnosis more by exclusion of other things before they can be diagnosed with autism? – exclude genetics, food allergies, toxins in the body, ADHD, sensory processing disorder, typical behaviors and there could be a combination of some of the above.
Again how do you differentiate between autism, mental retardation (MR), high functioning autism, Asperger’s, ADHD, oppositional defiance disorder, sensory processing disorder (SPD). What are you going to do with those older children or adults who have been diagnosed or may need to be diagnosed with Asperger Syndrome? Reading many “Aspie” blogs it seems that population separates themselves from those classic autism kids who are non-verbal, lower functioning etc because these “Aspie’s” hold down jobs, are able to socialize (though it may be awkward or hard), have families and function in everyday life.
I sat in a presentation yesterday by Max Wiznitzer who is a pediatric neurologist in Cleveland OH. His opinion about this whole topic was that PDD-NOS should definitely be taken out of the DSM-V and that Asperger’s is not a “real” diagnosis that it is truly a part of the “autism spectrum” and that these people who are diagnosed with Asperger’s should fall under the higher end of the spectrum. Again, it seems that everyone has different opinions on this topic and it depends on how involved you are and what your background is. Many families and people who have a personal relationship with autism and Asperger’s feel differently than those doctors and other professionals who look at this from a different angle.
If you think about cerebral palsy, you have a wide range of abilities and disabilities with this one diagnosis. You have severely physically and mentally disabled children all the way to typical cognitive abilities and some slight physical disabilities that may be fixed by a brace on their foot. We don’t think much different about this wide range, but it could be comparable to this “spectrum disorders” we are talking about that includes autism, PDD-NOS and Asperger syndrome.
On the other hand….
Why would we want to lump a person with a high IQ, independent in daily living skills, may have social quirks but working on it, may have some quirky behaviors or motor patterns and living life like most of us, with a person who has a low or moderate IQ, completely or mostly dependent on daily living skills, non-verbal, possible aggressive or negative behaviors and repetitive behaviors together? They seem like such different diagnosis to lump all together. Maybe there should be “Spectrum Disorders” and then subcategories are “autism/ mild to severe”, “Asperger’s”, and something else that may describe classic vs. regressive autism. Rett’s syndrome also appears under the autism ICD-9 code 299.0 “autism spectrum disorders” but it only appears in girls (very rarely in boys) and seems to also have different criteria for diagnosing so maybe it should better fit somewhere else. I am still undecided about where Rett syndrome needs to go.
These are questions I just want to raise and have people think about, granted the final decision comes down to the APA, but what is your opinion on the situation? At least when we have different opinions, it creates conversation and we continue to learn and educate ourselves about this growing epidemic of “autism on the rise” in our country. This would lead me to my next article to write which would be “Is Autism Overly Diagnosed, or was it never truly Autism in the first place?” Stay-tuned!
American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, 4th ed. rev. ed. – Washington, DC, American Psychiatric Association, 2000.
Prior M, Ozonoff S: Psychological factors in autism. In Volkmar FR (ed): Autism and Pervasive
Developmental Disorders. Cambridge, Cambridge University Press, 1998, pp 64-108
Volkmar FR, and Wiesner LA: Autism and related disorders. Developmental-Behavioral Pediatrics.
Philadelphia, PA, Saunders, 2009, pp 675-678.
This Month’s Featured Author: Britt Collins, M.S., OTR/L
Our thanks to Britt Collins for preparing this article for our newsletter,
Britt received her degree from Colorado State University and since then has worked in a wide variety of settings including; private practice, sensory integration clinics, inpatient acute and rehabilitation hospitals, PICU, outpatient rehab, and skilled nursing facilities. Her passion is SPD and working with kids on the autism spectrum among other developmental disabilities. She is currently speaking around the country with Carol Kranowitz and Temple Grandin at Sensory Conferences spreading the word about Occupational Therapy and Sensory Integration. She is going to be presenting an online presentation for OT-Advantage on Saturday April 3rd 10:00am EST. You can sign up for this accredited CEU course at http://www.OT-Advantage.com and click on Continuing Education. The online webinars are easily accessible in the comfort of your own home. June 18th she will be presenting with Temple Grandin and Paula Aquilla in Portland OR. Please visit http://www.fhautism.com for more details.
Britt has also co-created a set of 4 DVD’s that focus on educating parents, teachers and other therapists about how to implement OT and sensory techniques into the home, school and community. The DVD’s are Occupational Therapy for Children with Autism, Special Needs and Typical; OT in the Home; OT in the School; Yoga for Children with Special Needs. Please visit http://www.TRPWellness.com for more information.
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