Autism is not a puzzle, nor a disease. Autism is a challenge but certainly not a devastating one.Autism is about having a pure heart and being very sensitive… It is about finding a way to survive in an overwhelming, confusing world… It is about developing differently, in a different pace and with different leaps. Autistic beings develop and bloom if their spirits, talents and self-esteem are not destroyed by bullies, prejudice, ‘doggie-training’, and being forced to be ‘normal’. Trisha Van Berkel, Odd One Out Blog
Diagnosing Autism In Adults: How Does It Work?
I remember travelling in downtown Chicago in my younger years. I grew up in Brazil, South America, so I wasn’t too familiar with Chicago’s traffic patterns or layout.
I was trying to visit a friend. After a couple hours of driving, I finally stopped to ask for directions, and found out that the name of the street I was trying to find ran east-west in the city, where in the suburb I had driven from, it runs north-south!
I remember also driving down a one way street once, not realizing anything was wrong until the drivers coming at me started honking their horns!
It’s a different feeling altogether when I drive with a GPS. The device tells me where I am, and how to get to where I’m going.
A diagnosis of autism and/or Asperger’s is like having a GPS to find your destination; or a map of a garden maze, so that the ambiguous becomes more specific. It can help you make sense of yourself and your experience.
A colleague in the counseling field recently asked me if I know of any adult screening/questionnaires for Aspergers.
In this post, I’ll share some tools, including suggestions from Dr. Valerie Gaus, author of Cognitive-Behavioral Therapy for Adult Asperger Syndrome, about diagnosing autism in adults.
Screening Tools: Before Getting an “Official” Diagnosis
As pointed out in Real Age, a screening tool is used on someone who has never considered having a specific condition. For example, let’s say you’ve never had a heart condition. A cholesterol screening would be one way to determine whether you may have that condition. A diagnostic tool, on the other hand, is used to confirm a suspected condition once initial testing has revealed its possibility.
Here’s the quote from Wired describing this screening tool:
Psychologist Simon Baron-Cohen and his colleagues at Cambridge’s Autism Research Centre have created the Autism-Spectrum Quotient, or AQ, as a measure of the extent of autistic traits in adults. In the first major trial using the test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. The test is not a means for making a diagnosis, however, and many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger’s report no difficulty functioning in their everyday lives.
Dr. Gaus summarized these diagnostic tests for diagnosing autism in adults in her book, Cognitive-Behavioral Therapy for Adult Asperger Syndrome.
Autism Diagnostic Observations Schedule
This test is also known by the abbreviation ADOS. This test may be less sensitive to symptoms in more cognitively able people. Clinicians must be trained extensively with this specific tool to administer it competently
Gilliam Asperger’s Disorder Scale
This is a questionnaire for caregivers of people between 3-22 years of age. The psychometric properties of the test are reported in a manual from a study done on 371 people. Unfortunately, the questionnaire was not tested on people older than 22. However, this scale can help clinicians structure inquiries about various symptoms of AS across four domains: social interaction, restricted patterns of behavior, cognitive patterns, and pragmatic skills.
Asperger Syndrome Diagnostic Scale
This diagnostic tool is a a questionnaire for caregivers of people between 5-18 years of age. It has not been tested on large samples, and should not be used to diagnose over age 18.
Australian Scale For Asperger’s Syndrome
This scale was only tested on clients between 3-19, and is intended for caregivers to fill out.
Autism Spectrum Quotient
The Autism Spectrum Quotient is a self-report questionnaire, to be used only with people of intellectual and verbal ability in the average to above-average range.
Miscellaneous Considerations from Diagnosis of Autism and Asperger’s Syndrome (Wikipedia article)
The future of the Asperger’s diagnosis is uncertain, since the DSM-V mental health diagnostic reference may eliminate the term Asperger’s altogether.
Currently, Asperger’s is similar to autism with challenges in social interaction, and restricted or repetitive interests or behavior; however, it differs from other autism spectrum conditions in that there is no general delay in language or cognitive impairment.
The criteria for diagnosing Asperger’s can vary slightly between the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), and the World Health Organization ICD-10. There are not a lot of standardized screening tools for Aspergers, and physicians and other health professionals often rely on specific behaviors to make a diagnosis [for example, abnormal eye contact, aloofness, failure to respond when called by name, failure to use gestures to point or show, lack of interactive play with others, and a lack of interest in peers.]
Some have questioned how reliable different assessments can be. [Please read the Wikipedia article for more detail].
Assessing adults is different than assessing children. For example, usually a multidisciplinary team of healthcare professionals observe a child across multiple settings. This is less possible with an adult.
Rather than attempt to rewrite the information, I’m including information about the procedure of the diagnosis from the Wikipedia article, diagnosis of Aspergers Sydnrome: [please see that article for the footnote sources in the quote]
A comprehensive evaluation includes neurological and genetic assessment, with in-depth cognitive and language testing to establish IQ and evaluate psychomotor function, verbal and nonverbal strengths and weaknesses, style of learning, and skills for independent living. An assessment of communication strengths and weaknesses includes the evaluation of nonverbal forms of communication (gaze and gestures); the use of non-literal language (metaphor, irony, absurdities and humor); patterns of speech inflection, stress and volume; pragmatics (turn-taking and sensitivity to verbal cues); and the content, clarity and coherence of conversation. Testing may include an audiological referral to exclude hearing impairment. The determination of whether there is a family history of autism spectrum conditions is important. A medical practitioner will diagnose on the basis of the test results and the child’s developmental history and current symptoms. Because multiple domains of functioning are involved, a multidisciplinary team approach is critical; an accurate assessment of the individual’s strengths and weaknesses is more useful than a diagnostic label. Delayed or mistaken diagnosis is a serious problem that can be traumatic for individuals and families; diagnosis based solely on a neurological, speech and language, or educational attainment may yield only a partial diagnosis.
Other Articles You May Enjoy:
Pursuing an autism diagnosis as an adult can be a bit confusing. And getting the diagnosis doesn’t change everything. You may, in fact, go through a lot of feelings and doubts once you receive the diagnosis. But I hope, in the end, it gives you some peace of mind.
Image credit: samuiarzt / 123RF Stock Photo
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