A Formal Diagnosis is Not Always Needed

As always, please remember that you do not need a formal diagnosis to join the autistic community. Self-diagnosis is considered to be absolutely valid and your lived experience matters as much as a formal diagnosis. If all you are seeking is self-knowledge, you may even enjoy taking the assessments discussed above or additional assessments available at the Embrace Autism website. 

Considerations Involved in Receiving a Formal Diagnosis

However, if you are considering pursuing a formal diagnosis, please be aware of some difficulties and benefits involved in that process. I can talk further about this during a therapy session if you would like to do so. You can also find a great discussion of these considerations in Dr. Devin Price's article, "Seeking an Autism Diagnosis? Here’s Why You Might Want to Rethink That."

Reasons to not pursue a formal diagnosis include:

• The usual expense involved in comprehensive assessments.

• A clinician's inability to assess adults in general and individuals from marginalized communities specifically.

• The lack of access to beneficial mental health interventions.

• Potential restrictions on receiving gender identity affirming care.

• The inability to immigrate or become a citizen in some countries.

• The loss of legal autonomy through court-appointed guardianships and conservatorships.

• The loss of parental and reproductive rights.

• The potential denial of organ transplants.

• The rationing of medical care to autistic individuals.

• The placement of non-consensual DNRs (do not resuscitate) orders into a patients medical record without their knowledge and/or consent.

• The detrimental effects of being perceived as less competent by doctors, school officials, and employers.

• The increased risk of discrimination against autistic individuals.

• The potential for others to dismiss the validity of an autism diagnosis. 

​

Reasons to pursue a formal diagnosis include:

• Greater knowledge of one's lived experience.

• A better understanding of factors that: positively influence mental health; facilitate resilience; increase ability to develop coping mechanisms; improve distress tolerance; and reduce meltdowns, shutdowns, and autistic burnout.

• The possibility for receiving functional accommodations at work and/or school.

• The ability to receive alternative medical treatments (for example, a medical marijuana card).

• The greater likelihood of prevailing in legal action based on discrimination by an employer, landlord, or business (which, of course, also depends on your financial resources, evidence, and energy available to initiate and/or pursue the legal action).

• Increased access to government benefits (for example, SSDI).

• The opportunity to take disability leave at school and or work.

• Access to accommodations in a work and/or school environment.

Differential Diagnosis Concerns

When engaging in the process of diagnosis, I find that it is important for clinicians to understand the expansive view of the nature of autism in general. The key factor here is that clinicians might unknowingly interpret autism traits as being part of the clinical picture of other differential diagnoses. To better understand the differential diagnosis between neurodiversity traits and other diagnoses, please visit Dr. Neff's Misdiagnosis Monday website.

​

MIGDAS-2 (Monteiro Interview Guidelines for Diagnosing the Autism Spectrum)

Many clinicians who are autistic (like me) believe that, while the ADOS-2 (Autism Diagnostic Observation Schedule - 2nd Edition) is often required by entities that provide benefits or accommodations to clients, it is actually the MIGDAS-2 (Monteiro Interview Guidelines for Diagnosing the Autism Spectrum) that is the most neurodivergent affirming assessment.

​

Pearson Sensory Profile

It is often helpful to use a Pearson Sensory Profile, not just by answering the questions but by digging deeper through follow-up questions that address the reasoning behind the sensory sensitivities. Exploring the day-to-day sensory difficulties of autistic individuals allows for opportunities to reduce meltdowns, shutdowns, and autistic burnout. An Adolescent/Adult Version and the Birth to 14-Years-Old Version are both available. 

​

CAT-Q (Camouflaging Autistic Traits Questionnaire)

One key factor in diagnosis is the internalizing vs externalizing presentations of autism and the key concerns involved in camouflaging, also known as masking. Some researchers try to define presentations according to the sex that a person was assigned at birth, but that is a reductive presumption that is not based adequately on either research data or lived experience. Thus, a very important assessment to include for adolescents and adults is the CAT-Q, as it addresses the masked presentation of autism.

​

RAADS-R (Ritvo Autism Asperger Diagnostic Scale–Revised)

The RAADS-R is especially important, as according to the website Embrace Autism it is "designed to identify adult autistics who 'escape diagnosis' due to a subclinical level presentation."

​

SAAT (Self-Assessment of Autistic Traits)

There is a recent (March 13, 2023) clinical self-report measure of autistic traits as described by autistic people called the SAAT. The article detailing this assessment is called "Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits" by Ratto et al. The assessment itself can also be downloaded.​