Why is it so hard to find a psychologist who will diagnose Adult Autism?
Autism is often misunderstood, especially in girls and women, and adults who have not been diagnosed earlier in life. And there is becoming a greater and greater divide between professionals who have educated themselves about what autism looks like in girls, women, and adults, and those who have not.
The autistic community generally does not use terms like Asperger’s, person-first language, ‘high functioning’ and ‘low functioning,’ and the idea of being “a little autistic.” I have found that many adults who are considering diagnostic testing for autism are well informed and have done lots of reading and internet investigation to determine whether testing makes sense for them. Once you start learning more, I think it is very easy to forget that for many people, this is not necessarily common information unless people seek it out, and you have to be educated to know these things are not correct to say. I commonly hear these terms from both potential clients who are looking for an evaluation and from other psychologists who are looking to consult. Usually, they have no idea these terms are outdated and this is not intended badly, but just a lack of knowledge. Why is this such a problem, particularly with psychologists?
Psychology training programs do not prepare psychologists to understand Autism
Many psychology training programs offer one class on “abnormal psychology” and there may be 1-2 classes in that whole course that actually focus on autism. Now, there are usually electives and choices that students can make, but it is safe to say that many psychologists may have had very little formal education on autism. And the information that is typically presented in these courses is often about children with significant support needs with little mention of adults. There are absolutely exceptions to this, and people who are motivated may be able to gear many of their papers and projects towards autism if they are want to. For example, in an ethics class, they might be able to write about the ethics of the treatment of autistic children in particular settings. But this is NOT the norm, and as a result, there are plenty of psychologists or neuropsychologists who say they “don’t do autism.”
Psychology courses are often taught by older faculty members who have been teaching the same material for years, so there may be some updated information but much of it does not change significantly over the years. So you have psychology graduate students going out onto internships with sometimes very minimal knowledge of autism. I feel fortunate to have gotten more information on diagnose adult autism—I worked with a professor who did a lot of work on autism and social skills—and I learned a lot from working with him. But I earned my Ph.D. in 2010—and all of those ‘antiquated terms’ I referenced earlier were what was taught at that time. There are many psychologists who are 30 years older than me or more whose knowledge of autism was much, much less. And some of these are professors or other trainers in other settings, further impacting the training that new psychologists receive.
Practical training experiences with adult autism are limited
Along with coursework, there are other learning opportunities that are part of earning a Ph.D. in psychology, which is typically what is required to diagnose adult autism. First, there are practicum experiences, where students gain some real-world hands-on experience. Some of this might be required placements and there are usually options, which might involve doing counseling, doing testing, or other types of things. The important point to understand is that these experiences differ significantly.
The final part (other than doing a dissertation for Ph.D. candidates) is an internship, where the student does a year-long placement at a particular facility to gain more extensive hands-on training and experience. There are all types of internship sites, including hospitals, clinics, school systems, jails, inpatient facilities, and other places. While a student probably interacts with autistic individuals in any of these settings, the primary autism-based settings focus on evaluation and treatment of children or work with individuals with very high support needs and often, co-occurring intellectual disabilities.
The biggest takeaway here is that psychologists have very different training experiences, and at best, they get “some” experience diagnose adult autism with low support needs, and at worst they have virtually no experience with autism. For psychiatrists, it is even worse and exposure to developmental disabilities and autism is even less of a priority in their training.
To maintain licensure, we have to do regular continuing education and while some of it has to be on ethics and state-specific laws, most of it if up to the psychologist to choose. So a psychologist could never do any more education in autism if they did not choose to. Even if they do, much of the approved training opportunities are child-focused and there are few opportunities for further training on diagnose adult autism.
All this to say, you may have dramatically different experiences with evaluation depending on the psychologist you see. A person sees through their own lens and worldview, and they often do not know what they do not know. Someone who does a lot of forensic psychology may be more inclined to look for dishonesty and inconsistencies. Someone who is ‘out of the loop’ may very well believe that they can assess for autism because they can look at the DSM-5 and have access to tests and checklists for autistic characteristics. But many of these tests under-identify or are not appropriate for adults. And autism testing involves nuances and clinical judgment more than other mental health diagnoses. As opposed to, did a person get this item right or wrong, we are having to assess the quality of social initiations and the quality of social responses, and the impact of sensory sensitivities on a person.
Some therapists or doctors might refuse to even test someone for autism based on attributes such as making eye contact or having friends. These are perfect scenarios for second opinions. If that person does not have expertise in the way autism presents in adults or people assigned female at birth, they are likely comparing you to what they know of autism, which is probably a white little boy with classic autism (hand flapping, no eye contact, significant speech prosody issues). If you are an adult, you of course do not look like that, because you have matured and probably started masking along the way.
Choose a provider carefully
The main takeaway here is that getting assessed for autism as an adult is best done by someone who specializes in this type of evaluation. Unlike other types of evaluations, psychologists get little training and experience in this area but may still be overconfident in their understanding of what it looks like in girls, women, and other adults. There are many good psychologists out there, and it can take a little time to find the right person, but it is worth it to research prior to scheduling.
Dr. Jessica Myszak has had over 10 years of experience performing psychological evaluations with children and adults. She offers both in-person and telehealth evaluations. In addition to seeing clients on the Chicago North Shore, she is able to work with families who reside in Arizona, Colorado, Delaware, Florida, Georgia, Illinois, Missouri, Nebraska, New Hampshire, Nevada, Oklahoma, Tennessee, Texas, Utah, Pennsylvania, Virginia, and North Carolina, Washington DC, Wisconsin, Alabama and Kentucky! If you are interested in learning more about potentially working with her, you can visit her website here or email her here to get the process started.