Autism Self-determination (Part 2)

In my last post, I described ways that I explored the possibility that I have Autism Spectrum Disorder (ASD) in addition to ADHD and an Unspecified Trauma- or Stress-related Disorder. I now have high confidence I am indeed autistic – and not just a tad on the spectrum, but actually at the higher end of symptoms exhibited.

After much consideration, I am choosing to self-determine instead of continuing to seek a professional diagnosis of this condition. In the way I am using the term, self-determination for me right now means:

• I am self-diagnosing with authority. I will no longer tell people I “might” have autism or my care team “suspects” I could be on the spectrum. As far as I am concerned, I am autistic without question unless something significant changes in my mental state or the scientific knowledge about ASD.
• While my team of mental health care providers will offer input and support, I consider myself at the helm of choosing how I will “treat” this condition. (The use of quotation marks here reflects my growing belief that being AuDHD is not a disorder, but rather just a different neurotype than most people – more on this in a future post!)
• I am empowering myself to decide on a case-by-case basis when I will or won’t disclose that I’m autistic. Not because it’s a secret or I’m ashamed, but because it’s not a dialogue I feel is necessary in every setting of life. I’m also learning about the potential risks of being too open about it in certain situations.

Many factors went into my decision-making process for self-determination. This choice is the best one for me right now, but I am not advocating that others do the same.

If you choose to, I urge you not to approach the undertaking lightly. With nearly one-third of folks in the US self-diagnosing a myriad of health conditions based on online research, mistakes are certainly likely given how many conditions have closely overlapping symptoms.

There’s also the possibility of basing self-diagnosis on false information in heavy circulation. Case in point: a recent study found that only 27% of the most popular TikToks about autism are based on reliable information, and 41% were entirely inaccurate.

If you suspect you have ASD, there are many considerations to take into account before deciding whether to work with a medical practitioner for a diagnosis. I will touch on some of these below as I explain what was on my mind before I reached my own conclusions about how to move forward. At the end, I’m also linking a few articles that discuss the matter of self-diagnosis.

“The tendency to look for a diagnosis to explain any variations in personality and behavior takes away from accepting normal variety among children and adults, and minimizes the significance of living with a significant disorder that impacts many aspects of the person’s life.”

Diane Franz, ph.d.

Degree of Certainty

In the first part of this series, I explained all of the methods I used to learn more about autism and explore whether it seemed like a possible fit for me. This was a significant investment of time and energy.

I involved medical professionals throughout the journey from curious to suspicious to leaning in the direction that I was autistic to eventually becoming convinced. A valid neuropsychological assessment identified my symptoms as being consistent with the disorder; results that were then confirmed repeatedly by every online assessment my therapist recommended and I dug up.

It is difficult to eliminate the possibility of mistaken diagnoses as a result of the complex interplay between our mental health, brain chemicals, and overall functioning. But to the best of my ability, I have addressed every other possibility with the input of qualified professionals who support my assessment.

“A 2015 study found that self-diagnostic assessment tools can be quite accurate and effective for autistic people, suggesting they can be trusted to know themselves, do thorough research, and self-assess their understanding of what it means to be autistic.”

Olivia Guy-Evans, MSc

Barriers to Seeking Diagnosis

Even if I wanted an official ASD diagnosis, there are countless obstacles to attaining one. The first challenge is finding a clinician without a massive waiting list. US families typically wait an average of three years before getting their children successfully diagnosed and few evaluators even offer ASD assessments for adults.

Then there’s the matter of cost. Even with insurance, it’s likely that only negligible portions of the expenses will be covered, and the average price ranges from $1,000-2,000. Many self-diagnosed autists consider a formal diagnosis a privilege, whether they would like one or not.

Another concern is that clinicians who perform evaluations often lack experience diagnosing and treating neurodivergent people. It’s even harder to get accurate diagnoses for women, who may not match the traditional diagnostic criteria that were developed based primarily on research of cisgender white males and/or children. Because many individuals don’t conform to preconceived notions of what autism is, many autists experience a myriad of misdiagnoses. This can create trauma and distrust of the medical community, which makes self-diagnosis all the more appealing.

Benefits of a Diagnosis

Folks who pursue diagnoses for mental health issues may be motivated by ensuring they’re receiving appropriate medication and/or treatment to resolve the issue. However, autism does not have a cure; it is a lifelong condition. Nor are there any medicinal treatments for it, though some prescriptions may be used to help manage specific symptoms (e.g., the only two FDA-approved drugs for ASD children may help with irritability and/or aggression).

Other motivators are not relevant to my situation or compelling enough to persuade me to invest further into pursuing a diagnosis. For example, I have low support needs, and I’m not seeking approval from social benefit programs or elsewhere to access services or protection under the Americans with Disabilities Act. Even if I had interest in disability services and legal protection, my ADHD diagnosis already covers my right to request accommodations in workplaces or other institutional settings.

I am also fortunate to have an open-minded network of folks who don’t dispute my decision or challenge me in ways that drive me to seek professional validation. The people most important to me support my process and don’t question the validity of my self-diagnosis.  

Risks of a Formal Diagnosis

It’s important to know that there are situations in which having a documented ASD diagnosis can become a liability:

• If you have a guardian or conservator, bear in mind that your health information can be shared with them without your permission.
• Having ASD on record may influence how your healthcare providers approach your care; they may underestimate your abilities or be influenced by their own misunderstandings about autism.
• Before Obamacare made it illegal for insurance companies to raise rates or drop patients with pre-existing conditions who were considered high-risk, an ASD diagnosis could result in being denied or losing coverage. While this hasn’t been the case since 2014, we’ve all seen how swiftly politicians can dismantle past protections and replace them with new policies.
• Being diagnosed may impact immigration eligibility to certain countries. For example, there are cases where relocating families were granted visas for everyone except the autistic member. Counties may also deny residency if an ASD person’s medical treatments exceed their medical cost threshold.
• While the US military doesn’t outright ban autists from joining, ASD is considered a “disqualifying condition.” Recent data shows only about 500 out of 1,800 autistic applicants received approval for a medical waiver.
• While autistic folks are permitted to adopt or foster children in the United States, having a diagnosis can lead to additional screening and bias may influence whether you are deemed eligible.
• Parents with disabilities often face discrimination, and they are less likely to be awarded custody or visitation rights. They can be required to perform a parenting assessment, which may be performed by evaluators lacking experience with ASD and become a deciding factor in settling disputes between parents.

Recognizing My Privilege and Blessings

It has been an essential part of my journey in these past few years to explore my mental health and work extensively with medical professionals to get accurately diagnosed. I reached the finish line with ADHD and now feel comfortable stopping short on the ASD front. Who knows, though, maybe I’ll change my mind about this in the future.

In the interim, I recognize that the only reason I have a choice in whether to get diagnosed or disclose my condition is because I am incredibly privileged and blessed. ASD is truly a spectrum. While 26.7% of autists are considered as having profound autism, I have low support needs. My dual condition offers me access to the few accommodations I have an interest in without needing ASD verified. Being a white cis woman offers me social standing that supports more comfort in requesting accommodations as needed and increases the chance my requests will be met. And I’m fortunate to have a great support network and access to supportive, neurodivergent-friendly medical professionals.

Resources

The list below is far from exhaustive, but may be helpful:

• LA Times – “Why Many People are Diagnosing Themselves with Autism and ADHD”
• Simply Psychology – “Is It Valid to Self-diagnose Autism?”
• Dr. Megan Neff – “ADHD and Autism: How ADHD and Autism are Related”
• Baystate Health – “Autism Self-Diagnosis: Can You Self-Diagnose Autism Spectrum Disorder?”
• Healthline – “People are Misdiagnosing Themselves with Autism from TikTok Misinformation”
• Children’s Hospital of Philadelphia – “Wondering if You’re Autistic?”
• Autism Awareness Centre, Inc. – “Am I Autistic? A Guide to Diagnosis for Adults”
• Psychology Today – “Should You Pursue a Diagnosis of Autism as an Adult Woman?”
• Psychology Today – “The Barriers to an Adult Diagnosis of Autism”
• Autistics Unmasked – “Guide to Self-Evaluation & Navigating the Clinical Assessment Process”
• Milestones Autism Resources – “Adult Diagnosis Toolkit”