The Difficulty With Diagnosing Autism

By Sean M Inderbitzen LCSW, DSW

The question

A parent recently asked me, “Why is it so hard to get my kid an Autism Diagnosis?” This is a question all too familiar, and I suspect is something you may be asking. Whether you are a child or an adult, and are seeking answers to understanding who you are, the tension this creates inside you must be pretty difficult to bear. But as a fully clinically Licensed Social Worker in the state of Wisconsin, with some pretty intensive training in testing for Autism, and a life lived with Autism, I’m hoping I can share some thoughts that may begin to provide some insight to answering this question and address some commonly held misconceptions by institutions that refuse to provide assistance. To provide some clarity here is the definition we clinicians go by when diagnosing per the Diagnostic Statistical Manual 5-TR (DSM 5-TR).

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

The Diagnostic background

Clinical licenses like that of Licensed Clinical Social Workers, Licensed Psychologists, Licensed Professional Counselors, and Licensed Marriage and Family Therapists draw on diagnostic patterns laid out by our governing text the Diagnostic and Statistical Manual 5 TR (DSM 5 TR). This manual undergoes revisions nearly every decade but is the standard by which all licenses granted by state statutes make diagnostic decisions on what is and is not a diagnosis. While we could go a variety of ways on this, what is important is that anyone granted a clinical license (one of these four) by a state licensing board is able to diagnose anything within the DSM 5 TR in a medical setting. Thus anything within the DSM 5-TR is fair game to be diagnosed by a therapist, so long as they are willing to stake their clinical license on this, meaning depression to autism can all be diagnosed by someone with one of these licenses provided they feel comfortable making this diagnosis. Some diagnosis like Autism Spectrum Disorder (ASD) tend to require additional training as the preferred method of those asking for an assessment like Schools or Social Security may ask for testing from tests like the Autism Diagnostic Interview Revised 2 (ADI-R), and the Autism Diagnostic Observation Scale 2 (ADOS-2). However no where in the DSM 5-TR or statutes (to the knowledge of this author on 1.1.24) is it required to do testing to confer an Autism diagnosis.

Testing and its shortcomings

Both the ADI-R and ADOS-2 are published by a group called Western Psychological Services (WPS) which holds the copyrights to each of these tests, and provides training to those who train competency on both of these instruments. These psychological measurement tools like a trombone or trumpet can be used to bring a set of symptoms to life. Much like a trombone involves a series inhales and exhales while pulling and pushing a piece of steel in and out to make noise, so too can the ADI-R create a beautiful picture of what is or is not autism. Thus the music we wish to see, to name, the challenging experience of life with mental inflexibility and social communication, can be named autism with a tool like the ADI-R or ADOS-2. However these instruments, unlike the trombone, are not responsible for the music. The naming of a psychological phenomena, or the music if you will, is the careful consideration of a clinician, who holds one of the aforementioned licenses. And the copyright holders, and trainers that help teach competence in these tools indicate this much. If you take one of these trainings or buy these instruments for yourself, you will see them say, in very plain english:

POSITIVE TEST RESULTS ARE NOT THE SAME AS A DIAGNOSIS.

In short, it isn’t testing that gives the diagnosis, it’s the professionals’ designation of the symptoms that is. And there are some good reasons for this. For instance, as I’ve stated in an earlier article, there is a 25-35% error rate in use of the ADI-R or ADOS-2 (Vasile et al, 2022; Maddox et al., 2017; Mazefsky et al, 2006). Any clinician worth their salt doesn’t base their results solely on an instrument alone, but on the full diagnostic interview process. A process which involves assessing what could be false positives like Post Traumatic Stress Disorder, or Obsessive Compulsive Disorder, and other mitigating variables like biological conditions or genetic disorders which might look similar like Angelman syndrome, Fragile X, or 22q11.2 deletion syndrome. Disorders which may provide more information and be perceptually more treatable and may not result in a lifelong diagnosis that leads to substantive social discrimination. If that is not enough, trainers that are brought into competency by those using WPS tests, are taught not to disclose test results to institutions like schools and Social Security given that it is not designed for this purpose. In short these instruments create beautiful pictures of what could be autism like, but is not what defines a clinicians ability to diagnose it. That is not the tools purpose, and is a misuse of the instrument if an institution is asking for test results. As those institutions make the assumption that test results are equitable to a clinicians diagnostic assessment, to which they are not. Merely an aid, and in many cases a barrier used as a reason not to provide services or support to those with ASD.

Common Misconceptions

As I’ve outlined above institutions, not limited to but inclusive of, Social Security and school districts tend to misuse testing as a basis for diagnosis, rather than clinical assessment, which is the basis for any diagnosis within the DSM-5 TR, which publishers have been careful to not equivocate, and recommend users to do the same. This being the case I would argue that these institutions are not doing this purposefully but operate on limited resources, and have to serve a series of almost unlimited needs on a daily basis, with minimal ways to do so.

And to villainize these institutions is to miss the point of this article entirely and only to increase the mental inflexibility that we or our loved ones so desperately desire to escape when we suspect an ASD diagnosis. No, we must look at these people as humans, confused and misunderstanding — as these social systems may also be to the purpose of testing, and the barrier it creates by relying on it. Barriers that are much easier to circumvent through use of partnership and curiosity, not loud advocacy and criticism at first light. No, our work is to meet people in all of our own anger, to educate, and to engage in reform to remove our loved ones’ barriers. The process of how we do this matters. How we present, if no better than the system which fundamentally misunderstands us or our loved one, doesn’t achieve the change we are after.

Next Steps

Here are some tips for ensuring you are effectively advocating for your or your loved one’s needs:

1. Scan your body for any tension or anger that might be present when you think about the difficulty in getting yourself or your loved one the needed resources.
2. If you notice any anger or tension, try a coping strategy that has worked for you in the past, and use that until the tension and anger dissipate in the body. If you are unclear about this difference, think about a place where you feel really safe, I promise this place will be experienced differently. Wait until you are “there” to communicate with anyone.
3. Come to the autism diagnostic challenge with curiosity and partnership as an approach. If it involves making a phone call or meeting with another person, try asking open-ended questions only each time you notice the anger or the tension in your body. These questions force us to not just make a statement with a question mark, but to be open to what the barriers for the institution might be.
4. Remember attorneys are always an option, but likely an expensive and in many cases not so necessary starting point. People don’t like being served, most likely they want to help you even if you can’t see it.

References

RK, Vasile I, Bradbury KR, Olsen A, Duvall SW. Autism Diagnostic Observation Schedule (ADOS-2) elevations in a clinical sample of children and adolescents who do not have autism: Phenotypic profiles of false positives. Clin Neuropsychol. 2022 Jul;36(5):943-959. doi: 10.1080/13854046.2021.1942220. Epub 2021 Jul 22. PMID: 34294006.

Maddox, B. B., Brodkin, E. S., Calkins, M. E., Shea, K., Mullan, K., Hostager, J., Mandell, D. S., & Miller, J. S. (2017). The accuracy of the ADOS-2 in identifying autism among adults with complex psychiatric conditions. Journal of Autism and Developmental Disorders, 47(9), 2703–2709. https://doi.org/10.1007/s10803-017-3188-z

Mazefsky CA, Oswald DP. The discriminative ability and diagnostic utility of the ADOS-G, ADI-R, and GARS for children in a clinical setting. Autism. 2006 Nov;10(6):533-49. doi: 10.1177/1362361306068505. PMID: 17088271.

Sean Inderbitzen

Sean is a Behavioral Health Therapist, and lives with an Autism Spectrum Disorder. He has a caseload with 33% of his patients that live with ASD and varying comorbid psychiatric conditions. Prior to being a mental health clinician, he was a Vocational Rehabilitation Specialist for Wisconsin Division of Vocational Rehabilitation for 3 years. He was also appointed by Governor Walker to the Statewide Independent Living Council of Wisconsin. He is an incoming member to the Motivational Interviewing Network of Trainers, and provides training on motivational interviewing, ASD and employment, and ASD and comorbid psychiatric conditions. For more info, find him at Seaninderbitzen.com or on LinkedIn, and look for his new book Autism in Polyvagal Terms: New Possibilities and Interventions.