As I write this, I’m on a plane to Minneapolis, where I will provide a presentation called, “Identifying Autism in Undiagnosed Women” to the National Art Therapy Conference.
I’m a late-identified autistic individual. I am also a mental health counselor and art therapist who specializes in late-identified autism. I also write daily on this subject.
And yet, for all of my personal experience and professional education, training, and expertise, I cannot diagnose autism in adults.
A masters degree and licensure in mental health counseling gives me the “authority” to diagnose anything in the DSM-5.
And yet, a diagnosis from a mental health counselor is typically not seen as the gold standard. It is widely stated that an individual needs to see a psychologist (PhD or PsyD) or a doctor (MD) to be diagnosed with autism.
I am admittedly uneducated on the history of why this has evolved to the gold standard. I’m guessing a few reasons:
Autism was originally solely identified in children at a young age (2-5 years old). It is therefore best diagnosed by a medical doctor who will see the child regularly.
Autistic symptoms in young children were often severe, such as mutism, external meltdowns, and more. It was important for a medical doctor to rule out any other causes of such extreme symptoms.
Autism is often accompanied with other co-occurring disorders, such as learning disorder (dyscalculia, dyspraxia, etc.) and medical disorders (such as Ehler Danlos Syndrome). It is best if a medical doctor can assess for these conditions when they also assess for autism and monitor the progress of the individual.
Autism is a neurological “disorder.” It is therefore better for a specialist within that field to assess for autism.
These are all valid reasons. I’m sure there’s also more (this is an open invitation to drop a comment if you would like to share more educational information on this point).
However, there are also some drawbacks to doctors (PhD, PsyDs, and MDs) being the sole professionals who can diagnose autism. This becomes especially apparent when it comes to autism in adults.
Most doctors are solely educated in the external symptoms of autism and how it generally presents in studies (which skew toward white, cis, wealthy boys). Many doctors are unaware of how autism presents in women or adults. They are also unaware of internal symptoms of autism.
Many doctors are unaware of how autism presents in adults who have gone undiagnosed their whole lives. They’re unaware of how adults can mask or camouflage. This frequently leads to misdiagnosis. I’ve known many late-identified autistics who were misdiagnosed as bipolar or border personality disorder (myself included).
Many doctors use archaic assessments for autism. Even when an adult suspects they might have autism and goes for an assessment, it does not mean their doctor will accurately diagnose them. Doctors rely on old assessments that are designed with old knowledge about autism. These tests do not accurately assess for the internal experience of autism or the masking/camouflaging that some people have been practicing their entire lives. I’ve known fellow therapists who have self-identified as autistic, gone for an assessment, and been told they don’t meet the criteria. For an individual to be given a fair assessment of autism, they need a doctor who is up-to-date in autism research and aware of the neurodiversity movement.
If an individual is lucky enough to find a neurodiverse doctor, assessment is costly and can take years to schedule.
Many individuals argue that we do not need diagnoses. Devon Price also wrote an excellent article about some of the risks of diagnosing.
The Neurodiversity movement acknowledges that we can self-identify. I welcome this choice, and yet I acknowledge that some people crave a diagnosis.
Sometimes that diagnosis is just for the certainty. Autistics have a tendency to ruminate, self-question, and analyze oneself to death. Many autistics get caught in a spiral of analyzing, “Am I Actually Autistic?” For these individuals, a diagnosis can bring a peace of find and end to the rumination cycle.
Other individuals want a diagnosis in order to receive more accommodations, such as with college or at a job.
Some individuals have other reasons, such as wanting validity in the face of doubting family members.
For these individuals, more accessible means of effective and accurate diagnosis are needed. Educated and informed therapists could fill this gap. Especially therapists who are autistic.
I consider myself an expert in late-identified autism. I know I am capable of identifying autism and providing the certainty that someone needs.
I understand there would be limitations. For example, I could not assess for learning disorders or rule out other medical conditions.
This essay is an open invitation for conversation on this topic. For I have researched extensively online about who can diagnose autism and not been able to find a good answer.
What I have found depends on the geographical location of an individual. Within the US, each state has different laws. In the state of Arizona, I am allowed to diagnose anything in the DSM-5, and therefore can diagnose Autism. I’ve been told that some institutions need a letter from a doctor if they are going to provide accommodations. And yet, I wrote a letter of diagnosis for a student at the University of Arizona and she was provided accommodations.
I provide these examples to show how wildly unclear everything is. Every therapist I have ever spoken with is also unclear about it.
The field of autism is rapidly growing and expanding. As it does, I think a key topic is who can diagnose autism.
I would love to hear your thoughts and experiences in the comments.
Thank you for reading. If you’d like to read more, sign up for my FUNletter. If you would like to explore your autistic identity with an autistic therapist, you can learn more about my therapy services here.