Diagnosing Autism in Adults

September 20th, 2009 Posted in Miscellaneous


When today’s adults were children, autism spectrum disorder (ASD) awareness was nearly nonexistent. One doctor noted that before 1980, “most general practitioners and pediatricians went through their entire careers without ever seeing a case. If mentioned at all in medical school, it was relegated to part of a lecture on ‘rare but interesting’ psychiatric disorders” (Jepson, 2007, p. 24). It is possible that cases of ASD were either missed entirely (especially possible for high-functioning individuals) or misdiagnosed, (possibly as anxiety, depression, oppositional defiant disorder, or schizophrenia).

With autism awareness on the rise, the signs and symptoms of the disorder are much better known. An adult might wonder if perhaps the social difficulties they faced weren’t a result of Asperger’s, or if their restricted and repetitive interests weren’t misinterpreted as obsessive-compulsive disorder? However, diagnosing an ASD in adults is difficult. And what would be the point of an adult being officially diagnosed with an ASD? This article will address these issues, along with how an ASD evaluation for an adult might be done.

Why Seek Out a Diagnosis?

A primary reason adults might consider pursuing an investigation of whether or not they have an ASD is to have access to appropriate treatment and supports.

Social skills groups, support groups and academic supports, such as AHEADD, are available to individuals with ASDs. In Pennsylvania, the Department of Public Welfare Bureau of Autism Services offers an Autism Waiver – a statewide program of services designed specifically to meet the needs of adults (age 21 and older) with ASDs. Services such as assistive technology, community inclusion, job assessment and finding, and counseling are covered under the waiver. To be eligible for this program, you must have a diagnosis of ASD.

Another reason adults might desire a diagnosis is to have an answer to what might be a life-long mystery. While the label of autism itself isn’t going to do much good, understanding that the difficulties one had growing up were the result of a neurological disorder and not personal shortcomings can be a relief.

Whatever one’s reasons, it is important to talk to your doctor or mental health provider before pursuing this kind of testing.

Rule Out

Diagnosing autism, or any mental disorder for that matter, is not science. It is based on careful observation and understanding of signs and symptoms over a long period of time. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), psychiatric disorders that must be ruled out before a diagnosis of autism is made include:

  • Schizophrenia
  • Selective mutism
  • Expressive language disorder
  • Mixed receptive-expressive language disorder
  • Stereotypic movement disorder
  • Attention-Deficit/Hyperactivity Disorder

While ASDs are more often misdiagnosed as other mental disorders, physical disorders should also be examined and ruled out. These include:

  • Auditor processing disorder or hearing loss (social response may be impaired due to hearing difficulty)
  • Landau-Kleffner Syndrome

Developmental Perspective

Because ASDs are developmental disorders, by definition, the delays or abnormal functioning must occur prior to age 3 years. As one can imagine, it is impossible to accurately report symptoms and behaviors from when one is that young. A doctor or therapist may request permission from the client to contact individuals or institutions that might have memories or records of the client when he or she was between the ages of 2 and 5. Parents and older siblings are often a good source of information. With the right questions, a trained interviewer can determine if signs of ASD were overlooked or misinterpreted. Likewise, it may be helpful to contact schools or old therapists to obtain copies of records that might include helpful hints.

Measures

There are several questionnaires that are used to measure the extent of autistic traits in adults. One of these is the Autism-Spectrum Quotient (AQ), developed by psychologist Simon-Baron Cohen and colleagues at Cambridge’s Autism Research Centre. These questionnaires, while they may provide more information, are not precise enough to be used exclusively to make an autism diagnosis. (If you would like to take the AQ, click here.)

Another instrument that may provide information is a structured diagnostic interview called the ADOS (Autism Diagnostic Observation Schedule). The ADOS was developed by psychologist Catherine Lord and colleagues at the University of Michigan. It is a semi-structured, standardized assessment of communication and social interaction. One strength of the ADOS is its ability to differentiate between autism and other autism spectrum disorders. The validity of the ADOS is strongly related to the examiner’s clinical skills and experience with the instrument, therefore, it is important to find a clinician who is experienced in observation, scoring, and administering the activities.

Conclusion

Autism is often difficult to diagnosis in adults. Other disorders must be ruled out and information must be gathered from around the time when the individual was 3 years old. Measures such as questionnaires or structured diagnostic interviews may provide some additional information. Only a trained professional, through careful review of the medical and social history and thoughtful interpretation of information gained from standardized measures, can make an ASD diagnosis.

REFERENCES:
Jepson, B. (2007). Changing the course of autism: A scientific approach for parents and physicians. Boulder, CO: Sentient Publications.
Lord, C., Rutter, M., DiLavore, P., Risi, S. (2008). Autism Diagnostic Observation Schedule (ADOS) Manual. Los Angeles, CA: Western Psychological Services.

WRITTEN BY:
Jamie Schutte, MS, CRC
AHEADD – Communications Editor
University of Pittsburgh – Graduate Student Researcher
jamie@aheadd.org

  1. 18 Responses to “Diagnosing Autism in Adults”

  2. By Lee A. Wilkinson, PhD on Dec 6, 2010

    The inclusion of Asperger’s Disorder (Asperger syndrome) in the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases has produced a marked interest in the identification and treatment of this autism-related condition. Although there has been a dramatic increase in the research and clinical studies related to children and adolescents, there is a paucity of information regarding Asperger syndrome in adults. It is only recently that psychologists have begun to appreciate the complex challenges faced by a “lost generation” of adults with Asperger syndrome who were not diagnosed in childhood and have become an underserved population.

    Accurate differential diagnosis and a greater appreciation of the social difficulties associated with Asperger syndrome are critical because the high proportion of individuals who may be overlooked, misdiagnosed with another psychiatric condition, or present with comorbid psychiatric disorders such as depression and anxiety. Although there is a wealth of information regarding children with autism spectrum disorders, little is known about the identification of adults on the higher end of the autism spectrum. While there is no single set of criteria or “gold standard” for making a late diagnosis of Asperger syndrome in adults, there are a limited number of instruments that can be used for screening and assessment. The following phenotypic screening instruments are useful for adults who may have Asperger syndrome.

    • The Autism Spectrum Disorder in Adults Screening Questionnaire (ASDASQ; Nylander & Gillberg, 2001).

    • The Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI; Gillberg, Gillberg, Restam, & Wentz, 2001).

    • The Autism-Spectrum Quotient (AQ; Baron-Cohen, Wheelwright, Skinner, Martin, and Clubley, 2001).

    • The Empathy Quotient (EQ; Baron-Cohen & Wheelwright, 2004).

    Although these screening measures can be useful in the identification process, they cannot substitute for a diagnostic assessment and validation of the symptomatology identified by these instruments. We now have a diagnostic assessment specifically designed for adults. The Adult Asperger Assessment (AAA; Baron-Cohen, Wheelwright, Robinson, & Woodbury-Smith, 2005) is a relatively new semi-structured interview schedule developed for the late diagnosis of Asperger syndrome in adulthood. It links the above referenced AQ and EQ screening instruments, and uses more stringent diagnostic criteria specifically related to adults. These criteria include all the symptoms from the DSM-IV as well as several other criteria based on the characteristics of Asperger syndrome in adults. The AAA employs a template in which the individual is asked to endorse items from the AQ and EQ to provide examples of symptoms. During the clinical interview, the clinician validates these symptom examples by gathering information from both the individual and his or her relative or other informant. Following the interview, the clinician then formulates a diagnostic impression based on confirmation of the symptoms and prerequisites of the Asperger syndrome criteria.

    Little is known about the prognosis and outcomes in adults with Asperger syndrome in that there are relatively few long-term follow-up studies available. However, it does seem clear that outcome can depend greatly on the degree of support provided in adulthood. Although early adulthood may bring about symptom reduction and improved functioning, individuals with Asperger syndrome continue to have a need for services. As the knowledge and awareness of Asperger syndrome increases, many adults are expected to recognize their symptomatology, even though they may have not experienced major social difficulties and clinical impairment earlier in life. This late recognition and disclosure will result in a greater need for services as individuals seek treatment to address the secondary problems associated with the condition. A diagnosis in adulthood can also lead to greater self-understanding, self-advocacy, and better decision-making in life span activities such as employment and personal relationships.

    References available.

    Recommended:

    Wilkinson, L. A. (2008). Adults with Asperger syndrome: A childhood disorder grows up. The Psychologist, 21, 764-770.

    Gaus, V.L. (2007). Cognitive-behavioral therapy for adult Asperger syndrome. New York: Guilford.

  3. By Heather on Dec 6, 2010

    Thank you for your comment!

  4. By Rick on Dec 13, 2010

    Is there a support group for young adults who have Receptive Expressive Disorder to prepare them for the challenges and alternatives of independent living?

  5. By Heather on Dec 13, 2010

    Hello, Rick. If you are in the Pittsburgh area, our social group for college students might be appropriate, even if you are not a college student. If you would like to join us at a meeting to see if it would be appropriate, or if you have specific questions about the type of things we cover (this semester is greatly focused on transitioning towards independence) please feel free to email admin@aheadd.org.

    Thank you,
    Heather

  6. By Amy McGinnis on May 28, 2011

    My son is 22 yrs. old, and was thought to have ADD @ 4 yrs old. I was a young mother then, and thought I could help him by diet and behavior.
    Now, he is an adult and after visiting our doctor today, was poss. diagnosed with Autism. She suggested a referral to a specialist for a definate diagnosis.
    I am not very familiar with Autism, but after searching the internet and reading different “symptoms” that apply for Autism, I found that Jesse (my son) seems to have most of them. In actuality, all of them, but one.
    In a way, it’s a relief, but I need help–advice, suggestions for professional assist, etc. Can anyone help me?
    Thank you
    Amy

  7. By Heather on May 29, 2011

    Thank you for sharing your comment, Amy. Can you share with us where you are in the nation? That may help us to find you resources. In general, looking towards your local Autism Society of America chapter and/or visiting the Autism Speaks website can be incredibly helpful to find resources in your area.

  8. By Heather on Jul 10, 2011

    I originally was researching autism because I & several family members believe my nephew has autism. As I was researching it with my mom, we both realized that I had (and still have) a lot of the symptoms of autism as a child & as an adult now. I am 22 years old & it does explain ALOT of what I have gone through & still are going through. I live in SC 10 minutes over the border of NC. I just moved to the area. Where would I go to confirm these thoughts? What support & stuff is available if our thoughts are correct?

  9. By Heather on Jul 11, 2011

    Hi there, Heather. Thank you for your comment and questions. I would suggest to reach out to your local ASA (Autism Society of America) and ask them where you can get a diagnosis in your area. Best of luck!

    Heather

  10. By Lynn booker on Aug 25, 2011

    My 21 yr old neice in Mobile, AL needs to be tested for autism. I can’t find anyone who can help with this. Any suggestions as to who can help me to get this done? thanks

  11. By Heather on Aug 25, 2011

    Hi Lynn,
    Try this Autism Speaks link for contacts in your area who may be able to point you to someone who can diagnose adults:
    http://www.autismspeaks.org/community/fsdb/category.php?sid=1&cid=26

    You might also want to look at the local universities. Here is a link to some departments at the University of South Alabama
    http://www.southalabama.edu/departments.html

    Best of luck!

  12. By Jesse Dziedzic on Oct 20, 2011

    I don’t disagree with this article!

  13. By sherri evans on Oct 26, 2011

    I need help with finding someone to diagnose a adult cousin of mine. He was a product of the 60′s was not identified as having an disorder. Can you point me in the direction I should go for this information and assistance? Much appreciated I’ve been looking and calling everywhere there seems to be a possibility of help.

  14. By Heather on Oct 27, 2011

    Sherri,

    Can you tell me where you are located? Oftentimes, you can check with your local Autism Society of America for suggestions or the local Autism Speaks website, which often lists many contacts and facilities in the area based on age and need. Also, you may want to look at local universities that may be doing research and can provide a research diagnosis.

    Best of luck,
    Heather

  15. By Barbara Kelley on Nov 17, 2011

    This articles was really interesting because my daughter who was born in 1983 has been diagnosed with several of these disorders, including Schizophrenia and Attention Deficit Hyperactivity Disorder and hearing losses. She is now 28 years old and lives in a group home through Educare Adult Living Services because she developed a psychotic disorder after falling head first off a school bus when she was 5 years old. I am now wondering whether or not she was actually on the autism spectrum before that fall because of the ADHD and hearing losses. Should I request that the Educare Services have her sent to a doctor to see if she has an autistic disorder? It seems as though the medications she is on, and she is on quite a lot of different medicines on a daily basis, are just not working. She is in and out of mental hospitals for medication changes. Please tell me what kind of a doctor I should request she be sent to in order to get a proper diagnosis.

    Sincerely,
    Barbara Kelley

  16. By Raquel on Jan 2, 2012

    I have a brother who is 29 years old, and I believe he has aspergers. He has been exhibiting symptoms since he was a child, and I was wondering if there are any specialists who really have a good understanding of this and can provide some help to my brother and family? My brother has been struggling his whole life as well as my family, and if there is someone out there who can help I would be really grateful. We live in Chicago, IL near Skokie.

    Thanks

  17. By Nancy on Jan 13, 2012

    I have long wondered what some of my symptoms meant. While I posses high verbal skills, it seems to have gotten me in trouble more than once. I have been accused on more than one occasion of talking down to people. I assure you, that isn’t what I’m doing. I have a hard time communicating with people unless I am “lecturing”. I was diagnosed with Bipolar as well as Adult ADD years ago but have not been on any medication in a long time. I tend to do research on the subjects that interest me (history, geography, genealogy) and write (fiction [historical romance, action/adventure, police procedurals, etc.] and leave the mundane things (math, in particular) to everyone else. Perhaps that is why my finances are in such shambles. Where would I go for a definitive answer to this? I think I read about a website called Autism Speaks. Would they have the information on local resources in my area? Thanks!!

  18. By Heather on Jan 13, 2012

    Nancy,

    Thank you for your message. You are right that Autism Speaks can be a good resource. They can provide a list of resources in your area as well as licensed practitioners who can potentially provide you with a diagnosis. You can also take a look at your local office of vocational rehabilitation, especially if you are already a client, to discuss the possibility of assessment if your work is affected. I also suggest that people inquire through local universities and research institutions to see if they are doing any research in the area of adult diagnoses. I wish you the best of luck in your search!

  19. By Heather on Jan 13, 2012

    Raquel,

    Take a look at your local Autism Society of America as well as Autism Speaks to find lists of local resources. I cannot say that one particular type of practitioner or therapist would be better than another to provide you with a diagnosis, as psychiatrists, social workers, professional counselors, etc. all have varying degrees of experience with adults on the spectrum and providing a diagnosis. If your brother is a client of the office of vocational rehabilitation in Chicago, they may also be able to provide options.
    I wish you and your family the best of luck.

    Heather

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