Seaver Autism Center at Mount Sinai

In early 2011, I applied to participate in a paid MRI neuroimaging study for individuals on the autistic spectrum, administered by the Seaver Autism Center at Mount Sinai in NYC.

About month after inquiring through email, then making an appointment through phone, I visited the center and met with a team of specialists. Though I was already diagnosed with Asperger’s Syndrome in 2006, step by step, I underwent a series of tests and interviews, administered in order to independently diagnose my condition, first. Upon completion, I was required to set up an appointment for one of parents in order to be interviewed about my childhood. So, I took a deep breath, and chose my father.

One month and one rescheduling later, my father finally visited the center and conducted his interview. Upon review of his responses by my evaluation team, I received a phone call from the research coordinator informing me that he had left too many questions unanswered, so I would need to provide my other parent for an interview in order to finish my evaluation. Reluctantly, I agreed to set up an appointment for my mother, certain that it wouldn’t really help. The coordinator told me that an evaluation report would be written up upon conclusion of the interview, and that I would be mailed a copy of the results soon after that. It was over four months before my mother finally conducted her interview. She rescheduled a number of times, then finally negotiated to do it by phone, instead, due to some medical issues she was having.

After much delay, my written evaluation finally arrived – just a few days ago! Of course, I’ve already been obsessively reviewing the document, but now, it’s time to share!

Here are the full results of the ADOS:

Diagnostic Evaluations: Autism Diagnostic Observation Schedule (ADOS) Module 4

The Autism Diagnostic Observation Schedule (ADOS), Module 4, was administered to Rayn as part of this evaluation. The ADOS is a standardized, semi-structured diagnostic instrument designed to identify individuals with autism symptomology, but it cannot be used independently to diagnose autism. It combines unstructured conversation with structured activities and interview questions to probe for social and communicative behavior. Module 4 is designed for adolescents and adults who are verbally fluent. Rayn met the autism cut-off score in the domains of communication and reciprocal social interaction, and in total. A description of Rayn’s performance is provided below.

The ADOS Communication domain assesses spontaneous language, social communication, nonverbal behaviors, atypical language usage (e.g., echolalia), and narrative speech. Rayn demonstrated several communicative strengths, both verbally and nonverbally throughout the evaluation. She demonstrated a strong command of language and was able to report non-routine events in a coherent manner. She spontaneously offered information and easily engaged in conversation with the examiner. Despite these strengths, Rayn displayed communicative difficulties consistent with those observed in individuals on the autism spectrum. For example, she displayed flat intonation in her speech as well as formal use of speech throughout the evaluation. While Rayn responded appropriately to most of the examiner’s overtures, she did not spontaneously inquire about the examiner as frequently as would be expected given her other communicative abilities. Also, Rayn demonstrated very limited spontaneous use of gestures—descriptive, conventional, instrument, or informational. Her use of emphatic and emotional gestures was somewhat better-developed, but remained limited in frequency. Overall, Rayn demonstrated strong communication abilities with some pragmatic and nonverbal difficulties observed.

The ADOS Social domain includes activities that assess social communication, interest in social interaction, facial expressions, and social responsivity. Rayn displayed shared enjoyment in interactions with the examiner throughout the observation. She also effectively described her emotions pertaining to several different topics (work, relationships, personal history). She demonstrated good empathy and insight into relating to others. Rayn demonstrated a solid understanding of personal responsibility in her daily life and in her relationships. Despite these strengths, she displayed difficulty with nonverbal elements of social communication. Her eye contact was very infrequent, and she had difficulty with sustaining eye contact when it was directed at the examiner. She also struggled with directing her facial expressions toward the examiner. These difficulties permeated the quality of her social interactions, making both her social overtures and social responses slightly awkward. Furthermore, while Rayn engaged in reciprocal conversation with the examiner, it was less frequent than would be expected.

The ADOS Stereotyped Behaviors and Restricted Interests domain does not include any specific probes to evaluate stereotyped behaviors since repetitive and stereotyped behaviors are typically idiosyncratic and unpredictable. Scores in this domain are based on observations of unusual sensory patterns, hand and finger mannerisms, self-injurious behavior, and unusually repetitive or stereotyped behaviors throughout the assessment. Rayn displayed an excessive interest in politics and government which she brought up with the examiner several times during the evaluation. She also displayed compulsive behavior when assembling a puzzle, as she reorganized the pieces of the puzzle to create a specific pattern. She also displayed repetitive leg rubbing throughout the observation. No other stereotyped behaviors were observed. However, she did show signs of anxiety, including fidgeting and a shaky voice when discussing personal topics throughout the majority of the assessment.

Here are a few excerpts from the “ADI” section:

Autism Diagnostic Interview (ADI)

The ADI is a semi-structured diagnostic parent interview that probes for current behaviors and a developmental history consistent with autism symptomatology. Based on DSM-IV criteria for autism and pervasive developmental disorders, the ADI contains questions about children’s early development, communication, social interaction, and patterns of behavior. […]

Rayn’s mother, Mrs. Kleipe, first became concerned about Rayn’s development […] when she demonstrated acting-out behavior in response to a change in school placement. In the realm of communication, Rayn’s language milestones were reached at the age appropriate times. Mrs. Kleipe reports that Rayn began using single words at approximately 11 months of age and phrase speech by 18 months […] Rayn reportedly has a history of stereotyped speech, and has a tendency to repeat passages from films or television. Furthermore, she often makes up idiosyncratic phrases, and has a tendency to ask socially inappropriate questions. With regard to nonverbal communication, though Rayn reportedly never pointed to indicate things of interest, Mrs. Kleipe reports that when she was age 4 to 5, Rayn nodded her head to indicate “yes” and shook her head to indicate “no.” […] However, Mrs. Kleipe noted that, between the ages of 4 and 5, Rayn never engaged in the imitation of actions of others, either in the moment or incorporated into play.

With regard to socialization, Rayn demonstrates some characteristic features of autism spectrum disorders. For example, Rayn’s mother recalls that as a young child, her use direct gaze was inconsistent, such that she would only make direct eye contact with family members. She was sometimes observed to smile reciprocally at others, but again only with very familiar individuals […] Mrs. Kleipe reports that Rayn shows a normal range of facial expressions to communicate, as she did as a young child. Rayn’s mother reports that her expressions are sometimes inappropriate to the situation at hand, in that she smiles when others would not. In the domain of repetitive behaviors and restricted interests, Mrs. Kleipe report that Rayn has a special interest […] that is unusual in intensity that intrudes and interferes with other activities. Rayn reportedly spends much of her free time researching this topic on the internet […]

Here are a few excerpts from the “Summary” section:

Summary

Results from standard diagnostic measures reveal that Rayn presents with several characteristic features of an autism spectrum disorder. Though Rayn demonstrated a strong command of language and was able to report on a range of events and experiences in her life, her use of gestures and some aspects of pragmatic speech (e.g., inquiring about others) were limited. In addition, Rayn struggled with aspects of nonverbal communication during social exchanges specifically with using eye contact and facial expressions. However, Rayn’s sense of empathy and insight into social relationships did not seem to be impaired during conversations about real-life situations and in stories. During the assessment, Rayn’s preoccupation with politics and government was evident, as was her tendency towards compulsive behavior. Results from a structured developmental history conducted with Rayn’s mother indicate that Rayn evidenced some impairment in social and communicative domains (e.g., limited eye-contact, stereotyped speech) during childhood.

[…]

In sum, Rayn has several areas of strength, as evident in her capacity to complete higher education as well as form and maintain a meaningful relationship with her husband of nine years. She also has a history of reoccurring anxiety symptoms that were evident in her youth in the form of social anxiety and selective mutism, and currently take the form of episodes of panic. Rayn’s relative areas of ability, particularly in domains which many individuals with ASD struggle (higher education, marriage), speak to both the mild presentation of symptoms as well as her capacity to overcome several areas of difficulty. This evaluation highlights the fact that, despite these strengths, Rayn consistently displays features consistent with an autism spectrum disorder. Specifically, her limited nonverbal communication skills, intense preoccupations, and limitations in pragmatic speech (e.g., managing turns and topics in conversation, making small talk) are persistent across settings, and create significant impairment in her daily life.

The report concludes that I “meet criteria for a clinical diagnosis of an autism spectrum disorder.” And, while the ADOS indicates my condition to exactly match the DSM-IV’s diagnostic criteria for code 299.00: AUTISTIC DISORDER, the results of the ADI were inconclusive. Yet, since both tools were considered, among others, my evaluation team determined that I meet the diagnostic criteria for “AXIS 1: Asperger’s Syndrome” and “AXIS 1: Anxiety Disorder.”

Of course, upon learning that I met the diagnostic criteria for Autistic disorder and Asperger’s syndrome, I was immediately compelled to look up and study the exact DSM-IV definitions for both conditions, in order to compare and contrast them:

Autism Spectrum Disorders (ASDs):
http://www.cdc.gov/ncbddd/autism/hcp-dsm.html

At that point, it was easy to spot the main difference:

Autistic disorder involves “impairment” in three core areas: social interaction, restricted, repetitive, stereotyped behavior, and communications.

Asperger’s syndrome involves “impairment” in two core areas: social interaction and restricted, repetitive, stereotyped behavior.

Apparently, by DSM definition, my long-standing issues with pragmatic speech qualify as “a marked impairment in the ability to initiate or sustain a conversation with others,” while my regular use of movie and music quotes in conversation classify as “stereotyped and repetitive use of language or idiosyncratic language.” And, both are communications  impairments – a core area unique to Autistic Disorder.

In just one year’s time, all distinctions will be meaningless to professionals. The new DSM-V, which is due out in 2013, will fold the entire spectrum into the single diagnosis of “Autism Spectrum Disorder.” Even so, I’m glad to have the information, anyway, because it gives me a better understanding of my social issue in relation to neurotypical society.

Here is the full list of recommendations I was given, at the conclusion of my report:

Recommendations

1.Psychiatric Treatment. Rayn should be seen for a psychiatric follow-up to continue monitoring and treatment of anxiety as well as social impairments associated with autism spectrum disorders.

2. Psychotherapy. Rayn may also benefit from working with a psychotherapist on a weekly basis to help her develop ways of coping with her social difficulties. Additionally, this psychotherapist can support Rayn as she comes to further understand her experiences of anxiety.

3. Social Skills Training. Rayn should participate in a social skills training, either within or separate from an individual therapy context, geared towards enhancing her abilities to interact with others. Goals for social skills interventions should include:

a. Nonverbal Communication Skills. Rayn’s use of eye contact, gesture, and facial expression are limited for her age and cognitive ability. Rayn would benefit from training that focuses on how she can incorporate nonverbal communication when interacting with others.

b. Social Communication Skills. Rayn demonstrates significant difficulty in relating socially in conversation and requires explicit instruction in pragmatic language. Rayn would benefit from practice in incorporating questions about the thoughts, feelings, or experiences of others into conversation. Furthermore, Rayn would benefit from direct training in varying the intonation of her speech.

4. Recreational Group Activities. Participation in social groups and activities is recommended to help keep Rayn engaged in activities with other adults (besides her spouse). She may also be interested in joining groups related to her particular interests. Activities such as these will provide a context in which Rayn can further develop her social functioning and practice social skills strategies.