It’s been one week since I got my official ADHD diagnosis.

I had self-diagnosed myself about three years ago. Self-diagnosis is absolutely valid and an important part of building self-awareness and productive support.

I could not have felt informed and empowered to do that without queer educators like Sonny Jane Wise (seriously, go follow them and buy their book).

Getting an official diagnosis is a privilege.

When I was growing up, ADHD (and other neurodevelopmental diagnoses like autism) had a specific, narrow profile, usually for people with high care needs.

However, in reality, these conditions are multi-faceted spectrums that manifest uniquely in each person, and can co-occur with or presently similarly to other conditions like depression and anxiety.

As an adult who has held a full-time job consistently, runs their own business, and has completed a Masters degree, I don’t fit this outdated stereotype.

In fact, when I pursued getting an official diagnosis a few years ago, that was the first thing the evaluator said to me – and is why I did not go through with it.

After the age of 5, in the US, getting an ADHD or autism diagnosis can be lengthy and expensive. I am privileged to be able to afford a $500 out-of-network evaluation, outside of my health insurance coverage.

If you go through insurance, it can take months to get approved and scheduled for a neuropsychology evaluation. It often requires being assigned a finite number of in-network evaluators rather than having a true choice. This process may require hours advocating for yourself or your child on the phone.

Not everyone has hours. Not everyone has more hours to research and comprehend exactly what you need to say and do to navigate the mainstream healthcare system.

But we live in a world where official diagnosis is credible, and self-diagnosis is not validated.

Even when I worked at a disability rights organization, they wouldn’t consider an accommodation discussion because I did not have a formal diagnosis.

And even once you are approved for a neuropsychology evaluation, your local and in-network providers may or may not be culturally-competent, affirming of queer identity, and/or aware of their race and gender biases when evaluating.

This time, I decided to pursue a formal diagnosis again when my therapist recognized certain traits that were leading to irritability and depression. She was ready to hold me accountable and support me in getting a formal evaluation. And I had a trusted friend who had navigated the system for themselves and their children.

I had the privilege of resources, support, and – at the end of the day – money to get a formal evaluation.

Further, I was connected with an evaluator who understood how to recognize ADHD through decades of masking, coping mechanisms, inherent intelligence, and support systems that have carried me personally and professionally.

My formal diagnosis was validating and liberating. I now have access to resources that help me be my best self, including new medication, which has been critical in managing anxiety and depression for 10 years.

Formal diagnosis is a privilege.

It is also perpetuates the pathology paradigm – the idea that there is a “right” and “wrong” way for brains to operate, rather than a diversity. Formal diagnoses perpetuate unquestioned clinical authority of the mainstream healthcare system, which disenfranchises people who are queer, BIPOC, financially insecure, and have multiple disabilities.

Formal diagnosis is not and should not be mandatory to be considered valid.

If you’d like to learn more about a more expansive understanding of neurodivergent identity and liberation, follow the Lived Experience Educator, Sonny Jane Wise.

And keep normalizing universal accessibility for people of all abilities and neurotypes.

FURTHER READING:

Chung, Wilson et al. Trends in the Prevalence and Incidence of Attention-Deficit/Hyperactivity Disorder Among Adults and Children of Different Racial and Ethnic Groups (2019).

Fairbank, Rachel. An ADHD diagnosis in adulthood comes with challenges and benefits. (2023). American Psychological Association.

Jaramillo, Jessica A. Down The Rabbit Hole of Self-Diagnosis in Mental Health (2023). University of Colorado, Denver.

Joho, Jess. Privilege plays a huge role in getting an ADHD diagnosis (2021). Social Science Research Institute, PennState.

Walker, Nick. Neuroqueer Heresies (2021).