January 26, 2011

So, What Exactly IS ASD?? (Part 3-Diagnosis)


Here we are with the third installment on defining--or attempting to define--ASD.  If you missed them, you can always go back and read (Part 1-Definition & Characteristics) and/or (Part 2-Classifications & Causes).  I think I was going to discuss Diagnosis and Management in this post, and maybe overview Causes again.  Let's dig right in, shall we?

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Diagnosis is based on behavior.  It can be behavior observed by a trained clinician or through interviews by parents or other caregivers who have observed the child.  There are several diagnostic instruments in use, which I will discuss briefly a little later on.

Autism is defined in the DSM (Diagnostic and Statistical Manual), a publication by the American Psychiatric Association that sets forth standard criteria for the classification of mental disorders.  The current edition, DSM-IV-TR (Text Revision of the DSM Fourth Edition) was published in 2000.  The next edition, DSM-V, is not due for publication until May of 2013.  Autism falls under the prototype Pervasive Developmental Disorders.  Below are the criteria that must be met for a positive diagnosis of Autism:
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) 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)
(d) lack of social or emotional reciprocity
(2) qualitative impairments in communication, as manifested by at least one of the following:
(a) 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)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole-body movements)
(d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett's disorder or childhood disintegrative disorder.

And for a diagnosis of Asperger's Syndrome (whose major difference is there is no major delay in language development or in curiosity about their environment):

A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(2) failure to develop peer relationships appropriate to developmental level
(3) 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)
(4) lack of social or emotional reciprocity
B. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia

Diagnosis can be made by using a number of different evaluative tools in the form of questionnaires, which might be answered by parents, caregivers or a trained evaluator, all of whom base the answers on the observations made and interactions with the child being evaluated.  The most popular are the ADI-R (Autism Diagnostic Interview-Revised), ADOS (Autism Diagnostic Observation Schedule), and CARS (Childhood Autism Rating Scale).  As part of Emerson's evaluation, we also filled out the GARS (Gilliam Autism Rating Scale) form.  Descriptions of each are below.

"A pediatrician commonly performs a preliminary investigation by taking developmental history and physically examining the child. If warranted, diagnosis and evaluations are conducted with help from ASD specialists, observing and assessing cognitive, communication, family, and other factors using standardized tools, and taking into account any associated medical conditions.  A pediatric neuropsychologist is often asked to assess behavior and cognitive skills, both to aid diagnosis and to help recommend educational interventions." (Wikipedia)

[Side Note:  The pediatricians we know if down here in Louisiana would not do an ASD assessment.  We called our local Autism Society chapter and spoke to several people "in the know" and asked for referrals to places who could evaluate a child Emerson's age.  No one has ever mentioned to me anything about a neuropsychologist getting involved.  In fact, half the stuff I'm reading as I learn has not been mentioned to me as far as further evaluations, treatment and therapy ideas, etc.  It makes me wonder if I need to be calling around to more places!  Lesson learned: Do your research and get a second opinion or push for more advice/evaluations if you feel that something is missing in your initial eval.]

Diagnostic Tools (Wikipedia)

ADI-R (Autism Diagnostic Interview-Revised): a structured interview conducted with the parents of individuals who have been referred for the evaluation of possible autism or autism spectrum disorders. The interview, used by researchers and clinicians for decades, can be used for diagnostic purposes for anyone with a mental age of at least 18 months and measures behavior in the areas of reciprocal social interaction, communication and language, and patterns of behavior
The interview covers the referred individual’s full developmental history, is usually conducted in an office, home or other quiet setting by a psychiatrist or other trained and licensed professional, and generally takes one to two hours. The caregivers are asked 93 questions, spanning the three main behavioral areas, about either the individual’s current behavior or behavior at a certain point in time. The interview is divided into five sections: opening questions, communication questions, social development and play questions, repetitive and restricted behavior questions, and questions about general behavior problems. Because the ADI-R is an investigator-based interview, the questions are very open-ended and the investigator is able to obtain all of the information required to determine a valid rating for each behavior. For this reason, parents and caretakers usually feel very comfortable when taking part in this interview because what they have to say about their children is valued by the interviewer. Also, taking part in this interview helps parents obtain a better understanding of Autism Spectrum Disorder and the factors that lead to a diagnosis.
The first section of the interview is used to assess the quality of social interaction and includes questions about emotional sharing, offering and seeking comfort, social smiling, and responding to other children. The communication and language behavioral section investigates stereotyped utterances, pronoun reversal, and social usage of language. Stereotyped utterances are the few words or sounds that the individual uses and repeats most often. The restricted and repetitive behaviors section includes questions about unusual preoccupations, hand and finger mannerisms, and unusual sensory interests. Finally, the assessment contains questions about behaviors such as self-injury, aggression, and over activity which would help in developing treatment plans.

Autism Diagnostic Observation Schedule (ADOS):  an instrument for diagnosing and assessing Autism. The protocol consists of a series of structured and semi-structured tasks that involve social interaction between the examiner and the subject. The examiner observes and identifies segments of the subject's behavior and assigns these to predetermined observational categories. Categorized observations are subsequently combined to produce quantitative scores for analysis. Research-determined cut-offs identify the potential diagnosis of autism or related autism spectrum disorders, allowing a standardized assessment of autistic symptoms.
The ADOS generally takes from 30 to 60 minutes to administer. During this time the examiner provides a series of opportunities for the subject to show social and communication behaviors relevant to the diagnosis of autism.  Each subject is administered activities from just one of the four modules. The selection of an appropriate module is based on the developmental and language level of the referred individual. The only developmental level not served by the ADOS is that for adolescents and adults who are nonverbal.

Childhood Autism Rating Scale (CARS):  a behavior rating scale intended to help diagnose autism. CARS was designed to help differentiate children with autism from those with other developmental delays, such as mental retardation.  CARS is considered the gold standard in the field.
The CARS evaluation criteria is a diagnostic assessment method that rates children on a scale from one to four for various criteria, ranging from normal to severe, and yields a composite score ranging from non-autistic to mildly autistic, moderately autistic, or severely autistic. The scale is used to observe and subjectively rate fifteen items--relationship to people, imitation, emotional response, body use, object use, adaptation to change, visual response, listening response, taste-smell-touch response and use, fear and nervousness, verbal communication, non-verbal communication, activity level, level and consistency of intellectual response, and general impressions.
This scale can be completed by a clinician or teacher or parent, based on subjective observations of the child's behavior.

Gilliam Autism Rating Scale (GARS): a norm-referenced instrument that assists teachers, parents, and clinicians in identifying and diagnosing autism in individuals aged 3 through 22 and in estimating the severity of the disorder. Using objective, frequency-based ratings, the GARS can be individually administered in 5 to 10 minutes. The assessment consists of 42 clearly stated items describing the characteristic behaviors of persons with autism. The items are grouped into three subscales: Stereotyped Behaviors, Communication, Social Interaction.

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I hope this has helped some of you understand how a diagnosis is reached and the methods used to make a diagnosis.  For Emerson, we filled out the CARS and GARS forms.  Apparently, as we found out later, we were supposed to fill out one and daycare was supposed to fill out the other.  When we picked up the forms from the secretary, she called over someone else to explain to us what we were supposed to do, and that person told us to fill out both.  I think Jessica was surprised when I told her we filled out both as she assumed Pam at the daycare completed one.  This also explains why Pam kept telling me that Jessica never contacted her...they played phone tag for a while, but once Jessica received the evaluations, she didn't need to speak to Pam any more (I'm guessing) since she assumed Pam had done her part by filling out the questionnaire!  Talk about a confused state for all of us! LOL

This post turned out much longer than anticipated (big surprise), so I will continue with a Part 4 to finish up.  I've also gone back and added descriptors to each part so readers know which each of the "parts" covers.

Plan for Part 4--Management (or Treatment/Therapy Options) and possible an overview of past posts.



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