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The Elimination of the Asperger’s Diagnosis

There is a lot of confusion regarding the new Diagnostic and Statistical Manual of Mental Disorder’s (DSM-5) revision to exclude Asperger’s. Hopefully this post will clarify some things…

Taking into account the most up-to-date research, diagnostic criteria in the DSM are revised periodically by a team of professionals. Here are a few of the main changes in the DSM-5 that specifically apply to autism spectrum disorders:
  • Sensory behaviors are included in the criteria for the first time (under restricted, repetitive patterns of behaviors descriptors).
  • The terms used in the DSM-4 are autistic disorder, Asperger’s disorder, childhood disintegrative disorder and PDD-NOS (pervasive developmental disorder not otherwise specified). In the DSM-5, when people go for a diagnosis, instead of receiving a diagnosis of one of these disorders, they will be given a diagnosis of “autism spectrum disorder.”
  • The emphasis during diagnosis has changed from giving a name to the disorder to identifying all the needs someone has and how these affect his or her life.
  • The triad of impairments has been reduced to two main areas: (1) social communication and interaction; (2) restricted, repetitive patterns of behavior, interests, or activities.
  • Also, there are “dimensional elements,” which should give an indication of how much a person’s disorder affects him or her. This should help to identify how much support the individual needs.

The DSM-5 has eliminated Asperger’s as a separate diagnosis and weaves it into Autism Spectrum Disorders with severity measures within the broader diagnosis. In this revision, the individual must meet the criteria in sections A, B, C and D below to receive a diagnosis of Autism Spectrum Disorder:

A. Deficits in social communication and interaction not caused by general developmental delays (the individual must have all 3 of the following areas of symptoms present):
  1. Deficits in social-emotional reciprocity; failure to have a back and forth conversation
  2. Deficits in nonverbal communication (e.g., abnormal eye contact and body language) or difficulty using and understanding nonverbal communication, and lack of facial expressions or gestures
  3. Deficits in creating and maintaining relationships appropriate to developmental level – apart from relationships with parents (this may include trouble adjusting behavior to suit different social contexts, difficulties with imaginative play and making friends, and a lack of interest in others)

B. Demonstration of restricted and repetitive patterns of behavior, interest or activities (the individual must present two of the following):
  1. Repetitive speech, repetitive motor movements or repetitive use of objects (e.g., echolalia, idiosyncratic phrases)
  2. Adherence to routines, ritualized patterns of verbal or nonverbal behavior, or strong resistance to change (e.g., insists on eating the same food, repetitive questioning, or great distress at small changes) 
  3. Fixated interests that are abnormally intense or focus (e.g., strong attachment to unusual objects, restricted interests)
  4. Over or under reactivity to sensory input or abnormal interest in sensory aspects of environment (e.g., indifference to pain, heat or cold, negative response to certain sounds or textures, extreme smelling or touching or objects, fascination with lights or spinning objects)

C. Symptoms must be present in early childhood (although they may not become apparent until social demand exceeds limited capacity).

D. Symptoms collectively limit and hinder everyday functioning.

If your child currently has a diagnosis of Asperger’s – this will not change. In the DSM-5, people will get a diagnosis of “autism spectrum disorder” rather than any of the current DSM diagnostic terms.  The term “Asperger’s” may still be used colloquially by diagnosticians (e.g., for a diagnosis of autism spectrum disorder with similarities to Asperger’s). Also, many people identify closely with the term Asperger’s and may continue to use it in everyday language.

Overall, the changes to the diagnostic criteria are helpful. They are clearer and simpler than the previous DSM criteria. Including sensory behaviors in the criteria is very practical, because many young people with autism have sensory issues which affect them on a day-to-day basis. The emphasis on identifying the full range of difficulties that the person has during the diagnosis process is also convenient.

The DSM criteria are medically-based, and a diagnosis is given when “symptoms together limit and impair everyday functioning.” The criteria create the foundation for diagnostic tools, for example:
  • ADI (Autism Diagnostic Interview)
  • ADOS (Autism Diagnostic Observation Schedule
  • DISCO (Diagnostic Interview for Social and Communication Disorders)

These and other schedules are used to collect information in order to diagnose whether someone is on the autism spectrum or not. Therefore the criteria form the basis for the diagnosis, but the diagnostician’s judgment is very important.

The DSM-5 is an American publication. Most diagnoses in the UK are based on the International Classification of Diseases (ICD), published by the World Health organization. The current ICD (ICD-10) is virtually the same as DSM. The next version of the International Classification of Diseases (ICD-11) is due to be published in 2015. The authors of the ICD will consider the changes made to DSM-5, but their descriptions are often slightly different. Currently, there are no plans to change the label of Asperger’s during the next revision.

Diagnoses using the DSM criteria should always be based on a clinical decision about whether an individual has an impairment which has a disabling effect on his or her daily life. If a person gets a diagnosis of an autism spectrum disorder, it is likely to mean that he or she would benefit from support or services. However, the diagnosis is not directly linked to whether someone is eligible for support and services. Decisions over support and services are generally made by social service agencies and education professionals (often based in the local authority). The DSM-5 introduces levels of severity into the diagnostic process, to indicate how much support a person who receives a diagnosis may need. 

It is possible that fewer people – particularly at the higher-functioning end of the autism spectrum – will be diagnosed as having autism spectrum disorder in the DSM-5. However, the DSM team believes that this is not the case. Diagnoses should always be based on a clinical decision about whether an individual has an impairment which has a disabling effect on his or her daily life. Diagnoses will be given where symptoms cause impairment to everyday functioning. Many individuals with Asperger’s and high-functioning autism may continue to meet the proposed diagnostic criteria for autism spectrum disorder.

The removal of Aspergers Syndrome from the Diagnostic and Statistical Manual of Mental Disorders has been controversial, because it is commonly used by health insurers, researchers, state agencies, schools, and people with the disorder.  Many parents – and professionals – are concerned that eliminating the Asperger’s diagnosis will prevent mildly affected children from being evaluated for Autism, which may result in the ineligibility of much needed services.


Comments:

•    Anonymous said... I am in Liverpool uk, and I often find it really hard to get professionals to take his needs seriously, he can often seem very typical and many people tell me that there is nothing to be concerned about. It's not until they spend some time with him that they can see more of what's going on and how he finds little things so difficult.
•    Anonymous said... I found an autism "center" in monroe. Gonna try as and get info from them. My heart just breaks for parents and the autistic children who are in the dark about autism. Thanks to you, Stephanie  and Patrick, for making me see how awesome these kids are. I hope to at least be able to help the patients we have learn more.
•    Anonymous said... I found it hard having teachers and school psychologists get to have the final say (without going to due process, that is) on whether my son needed certain interventions. The people who deal with Asperger's and HFA every day can make suggestions, but the school doesn't have to follow them...never mind that they have seen fewer total aspie students than our medical providers, and studied asperger's less (or not at all...I met a special ed teacher once who found out my son had Asperger's and asked me to explain it to her). We need a new model of educational intervention.
•    Anonymous said... I have to say, I'm glad they have changed the diagnosis to ASD, I was so sick of people saying to me, "its only aspergers, or it's just aspergers" so I was kind of relieved when we got the diagnosis letter and it said ASD.
•    Anonymous said... I'm in BC and, while my guy has Aspergers, the diagnosis states ASD. It's hard with Aspergers isn't it, at first glance many seem neurotypical and hard to have their special needs taken seriously. I'm worried my guy will lose funding as seems so high functioning but a deeper look show his needs r actually quite high.
•    Anonymous said... Our local council in Cornwall UK are using DSM4
•    Anonymous said... sadly, many with Aspergers will no longer meet the criteria for Autism based on the changes. Boo.
•    Anonymous said... This scares me but knew it was coming.
•    Anonymous said... What is the difference if you dont mind me asking between asd and Aspergers
 

Post your comment below...

4 comments:

Amy Wall Lerman said...

Thank you for this. I know I have been confused. My son is very high functioning and has a diagnosis of Asperger's. I've been concerned about him losing services. If it wasn't for the services, my son would not be so high functioning.
Best,
Amy

Lisa Cocker said...

Thank you so much for explaining this. It was so confusing to me and you really clarified it

Karen Hollow said...

There has been a lot of talk about this in Australia and we follow the DSM. My son has Aspergers and would still qualify if tested now under the new criteria. My daughter however, may not qualify and is yet to be tested. Hopefully they will still take into consideration family history as my husband has Aspergers as well. Thanks for explaining this. Karen

Karen Hollow said...

There has been a lot of talk about this in Australia and we follow the DSM. My son has Aspergers and would still qualify if tested now under the new criteria. My daughter however, may not qualify and is yet to be tested. Hopefully they will still take into consideration family history as my husband has Aspergers as well. Thanks for explaining this. Karen

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