No Autistic Should Receive a Diagnosis Letter Like Mine

In December 2022, I pursued a formal diagnosis for autism. I was self-identified up until that point, but because I was considering more graduate education, I wanted an official diagnosis so I could have accommodations in school if I decided to pursue that.

I paid out of pocket and researched thoroughly for a psychologist who understood autism from a neurodiverse lens and was capable of assessing adult women. Many diagnosticians don’t know enough about how autism presents in women, and thus underdiagnose or misdiagnose (you can read about this in my essay Who Gets to Diagnose Autism?).

I was lucky enough to find a psychologist who is autistic herself and discussed a neurodivergent lens on her website. I found her assessment process to be an affirming and positive experience.

I was informed I would receive a follow-up letter confirming the results. The letter would be what I could show to school or employers for accommodations.

I was stunned when I received the letter. Here is what it has said (I have removed identifying information to protect the psychologist’s privacy):

I have had the opportunity to meet with Jackie Schuld. Jackie meets the diagnostic criteria for Autism Spectrum Disorder, a neurobiological developmental disorder which was confirmed in November 2022 by an in-depth psychological consultation outlined by the Autism Diagnostic Observation Schedule-2 (ADOS-2), the Autism Diagnostic Interview, Revised (ADI-R), the Behavior Rating Inventory of Executive Functions-Second Edition (BRIEF), and the Adult Self Report Scale (ASRS). When combined with an in-depth psychological interview, these tests set the industry standard for understanding and identifying Autism and neurodiversity across the spectrum. The results of the clinical interview coupled with the ADOS-2 and ADI-R confirm Jackie meets criteria for Autism Spectrum Disorder. Jackie exhibits signs and symptoms of restricted interests, repetitive behaviors and behavioral rigidity, social pragmatic deficits, hyper-sensory sensitivity and hypo-sensory sensitivity, mental inflexibility, and compulsions.

Jackie has no co-occurring intellectual disability, requires few supports (level 1 ASD) and is independent in her everyday life. If you have any additional questions or concerns, please do not hesitate to reach out.

I couldn’t believe how the letter reduced my autism diagnosis to a list of negative symptoms and behaviors. As a therapist who specializes in late-identified autism, I at least had the experience and knowledge to know why her letter may have been written this way.

The psychologist may have felt she needed to phrase the letter with medical model terminology because that is the standard in the field and what is required to be there for institutions to accept my diagnosis.

I found this phrase in a magazine - which I think should be the autistic advocate's rally cry. Haha. I added abstract colors to the back to turn it into a collage.

I also know enough about autism to know it cannot be reduced to negative traits.

I was still stunned though. The psychologist did not forewarn or prepare me that her letter would be written in this matter. Her email that included the letter also provided no explanation or warning.

I thought about all of the other newly diagnosed autistics who would receive letters like that. Who would feel reduced to negative traits. If I felt embarrassed to show that letter to anyone, how might they feel?

I am a strong advocate for change in the autism field. I think letters like this one is an example of what needs to change. I chose to reach out to the psychologist with the following email:

Dear [Psychologist],

I had a positive, affirming experience with you during the assessment process. The neurodiversity letter that you provided did not align with that experience. I found the strict medical-model focus on the negative symptoms of autism to be jarring. As a fellow autistic colleague and therapist, I have a few suggestions:

1. Your neurodiversity letter can be an opportunity to educate recipients (colleges, jobs, etc.) about a neurodiverse lens. Your letter can contain the negative symptoms AND education about neurodiversity, which includes positive aspects of autism/ADHD. I would be extremely hesitant to show this letter as it exists to any employer, education setting, etc.

If the above suggestion is inappropriate due to a specific format/jargon needing to be used for these letters, then I recommend the following:

1. Prepare your client by informing them in your email why your letter is written in a medical model (versus the neurodiversity approach you promote).

2. Inform your client that your neurodiversity letter is not a full or accurate representation of who they are and include attached handouts about autism and ADHD from a neurodiverse perspective (explaining the negative, neutral, and positive characteristics of autism).

3. Inform your client that the traits listed in your neurodiversity letter and ones commonly associated with those diagnoses, not ones that are specific to them. I suspect your neurodiversity letter is a form letter because mine included symptoms that we both agreed do not apply to me. Again, I understand why this may be necessary in your field, but the client needs to be informed of this.

I took the time to write these to you because my experience with you is that you genuinely care and want positive, affirming experiences for your clients. I felt like you would have the capacity to hear my suggestions and initiate change. Please let me know if you intend to incorporate these suggestions in the future. You are the primary person I refer my autistic clients to for diagnosis, but I would not want them to have the experience that I had.

Thank You,

Jackie

I sent the letter just before the busy holiday season. The psychologist has not had a chance to respond. I want to be clear, this essay is NOT about the psychologist. The psychologist is not the villain who needs to be attacked or brought down.

The villains here are the standards and norms of the mental health field. The standards that produce a letter such as this one. The medical model that reduces autistics to mere negative traits.

I share this personal experience for three reasons:

1. We need to change how autistics are assessed and diagnosed, including the formal paperwork.

2. We need to expand the conversation on autism so that the mental health field accurately understands autism (you can read more about this in my essay Autistic Adults Deserve Better from the Mental Health Field).

3. We need to advocate for change where we can. For me, that meant emailing the psychologist with my suggestions. I share my letter here so that others may have an example of how to address concerns with their mental health providers.

I hope that with time, no autistic will ever have to receive a letter like this again.

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