Is Formal Diagnosis of Autism/ADHD Right for You?
Choosing to pursue assessment for Autism and/or ADHD as an adult is a big step and you understandably may have a lot of questions. You might not know what the options are, and what you really need, and what potential drawbacks are, so I want to help put this option in context and give you more details to help you make the right choice for you.
Below is a collection of all the pros, cons, considerations, and options I can find related to formal assessment, which I’ll update as I learn more. (Please be aware, I’m only able to report here what others share, as I’m not a lawyer and am not part of many of the systems referenced below. Use this as a starting-point for your own research and questions.)
Self-Identification/Self-Discovery (“Self-Diagnosis”)
The first thing I want to say on this page is this: self-recognition is valid and it’s an important option for our community for many reasons.
YOU are the only person who can truly know your inner experience of being in your brain and body. If you have explored the options on my Resource page about Autistic self-discovery and other resources, then you are on a great track. I have a page on ADHD resources, too, which might help you strengthen your understanding of how those traits may be relatable for you.
Some people find that their own self-examination or “peer review” is all the confirmation they need (“peer review” is the informal term for having enough community members affirm that what you describe matches up with known traits/criteria).
Others feel that having a professional weigh in may help them feel more confident in living in alignment with the needs they’ve identified.
I encourage you not to hold back from seeking accommodations and lifestyle changes you need, even if you’re not formally diagnosed. If you discover something in the Au/DHD communities’ wisdom that help you, then that is a good thing! You won’t be taking away resources from others (especially not if you’re self-identified and thus are unable to access supports—which are rare in the US for adults, even with a diagnosis).
Some people may prefer something between self-identification and professional assessment, maybe like talking with a knowledgeable therapist just to get a little extra support in clarifying your self-recognition as Autistic/ADHD. That’s another great route! There are many great therapists who might support you in that path (me included)—you can find some good options at my referral sites list, here.
If you still feel that you would like for a professional versed in Autism/ADHD assessment to “dig in” more with you, and/or you really want or need a formalized diagnosis for yourself or support options, then read on for other factors to consider in choosing your next steps.
Different Tiers of Assessments
Some people don’t know that there are different types of assessments with different costs. There are three main types, two of which I offer:
(1) “Full neuropsychological testing” is done by a Licensed Psychologist (not me) and is typically extensive, most expensive, and results in a thorough and lengthy report that will be accepted for most support programs, even with the most stringent requirements.
(2) The middle-road option is a broad space that includes interviews and other data collection by a qualified assessor (me!) and can result in a thorough report of varying length and detail, differentiating Autism and/or ADHD from other possibilities, offering recommendations for supports, and can be tailored to meet various support programs’ requirements—fees vary according to the extent of the assessment and reports in this tier.
(3) The most basic assessment would be possible in clinically straightforward cases and would require less extensive assessment to confirm that diagnostic criteria are met, and would result in a simple “this is your diagnosis” letter without further detail or resources, which may be acceptable for some support services and would be inadequate for others—it’s best to check in advance wherever you might want to have your disability acknowledged.
Your assessor’s qualifications may influence how seriously your results are taken when you use their documentation to seek supports. Master’s level clinicians can provide competent and valuable assessments, however some other providers don’t realize or believe that, so there can be some extra convincing needed to get those results put to use. Of doctoral-level providers, there are many different professions who can diagnose, some of whom are Psychology PhDs, as well as PhDs in other professions like Licensed Mental Health Counselors (like me). If you want medication, it may be helpful to ask a provider if they can prescribe (I can’t, but I can recommend and advocate with your prescriber to support your medication request).
Reasons Why You May Want a Diagnosis
The reasons for seeking a formal diagnosis through assessment are many, and depend on your individual values, motivations, and needs. Here are a few reasons people seek out assessment and diagnosis:
Formalizing your Autistic or ADHD identity can provide a road towards self-confidence and self-love, community affirmation and support, strategies for wellbeing, and a path to relief from painful meltdowns, shutdowns, and implosions, and can help you start healing from internalized ableism.
A documented diagnosis can support seeking medications for ADHDers (and for secondary concerns like depression and anxiety that often co-occur with Autism).
Formal diagnosis is typically needed to receive disability accommodations at school, work, and elsewhere. Accommodations help you show your skills without unfair and irrelevant barriers blocking your way, and can relieve some stress of over-functioning. Some accommodations I’ve seen come through folks’ diagnoses include reduced hours and leave time at work to recover from Autistic burnout, and flexible deadlines and options for how to engage in school/work tasks to suit their brain style.
With knowledge about your neurotype, you can learn how to self-accommodate and self-advocate more effectively in situations like medical appointments, social interactions, and out and about, so that you can take part in life more fully.
Formal diagnosis and assessment feedback can help encourage you on the path to discovering your neurodivergent strengths, which can help guide your decisions in life—like choices about relationships, career, and lifestyle—to build a life that’s suited to you. Knowing your strengths can help counter the shame that is often directed towards us for Autistic/ADHD traits.
Reasons You Might Not Want a Diagnosis
This list is not exhaustive, and I’m not able to give you certainty about how these factors may apply to you specifically, but here are some reasons people might decide not to go through professional assessment and diagnosis:
For some people the time and cost investments are prohibitive, and self-identification with community support are best.
Assessment processes may be uncomfortable as you’re asked about difficult parts of your experience (although, I believe assessments don’t need to be infantilzing—I’m looking at you, ADOS).
If you are receiving or will be seeking gender-affirming care, some diagnoses may create barriers depending on the laws of your area. This is becoming an increasing concern in the US in 2025.
If your state has an autism registry, you may not want to be included for privacy and possible legal concerns. (I am not required to report to autism registries in any of my states of practice—Indiana has a registry, but LMHCs aren’t required to report to it.)
If you plan to immigrate to another country, disability may be calculated in eligibility factors.
If you have concerns about custody proceedings, these may be impacted by diagnosis status. Records from your assessment could be subpoenaed for custody or other legal proceedings.
If you are in or plan to pursue military or other careers where health history is important, some diagnoses or related conditions may be disqualifying. Some people report being fired (illegal, but hard to prove) or other employment consequences (such as observation plans) as a result of to employer/professional field bias after disclosing they are Autistic/ADHD.
If you plan to seek life insurance, eligibility or premiums may be affected by these diagnoses.
Nuance—What a Diagnosis Doesn’t Necessarily Do, but Might
It’s also worth mentioning that there are some things a diagnosis doesn’t necessarily do that people sometimes think it will:
A formal diagnosis doesn’t always notify your other medical providers by default, but it can. Some healthcare systems and providers do automatically share diagnoses that are entered in your file, such as between health insurance companies, as part of prescription-tracking systems, through medical record systems like Epic/MyChart, and some state-wide systems for certain healthcare professions. However, those forms of sharing are not universal between all providers/healthcare systems.
Additionally, HIPAA’s “Privacy Rule” allows healthcare providers to exchange information about mutual patients without their written/signed authorization for the purpose of diagnosis and treatment. However, many providers avoid doing this without seeking your specific consent first, or in an urgent situation.
You can ask your assessor and other providers about how these situations may apply before working with them, and anytime you have questions. In assessments with me, if you self-pay and don’t submit superbills, then you’re fully in control of who learns about your assessment and diagnosis, unless there’s a court order (I would require your clear consent before sharing information with another healthcare provider). (Also see more on confidentiality below.)A diagnosis isn’t entered in a “permanent record,” per se. Healthcare providers only legally have to maintain records for 7 years (minimum, per HIPAA) and then records may be destroyed, depending on the provider’s practice policies. Even if a provider maintains your records longer, they are still bound to the same confidentiality expectations. (Also see more on confidentiality below.)
Last, a point that’s important for many seeking a diagnosis to consider: a formal diagnosis in itself won’t correct anyone’s fundamental misunderstanding of what Autism or ADHD are, or who you are, or how those fit together. This means that family/friends may respond to you revealing a formal diagnosis in much the same way as if you shared an informal but informed self-identification. An assessment and diagnosis can, however, help you develop confidence and self-advocacy skills for those relationships/situations, and can back you up when seeking formal support, which can be quite valuable for some.
Confidentiality
Relating to many of the above concerns, confidentiality is an important consideration. Your assessment records are confidential, and confidentiality has limits. Confidential information can be shared in the following situations: (1) when you give specific written consent for a provider to disclose information about you, or (2) in response to a court-order, (3) if you use insurance to cover costs (even out-of-network), (4) between providers to support diagnosis and treatment, and (5) if it would prevent imminent harm (not as relevant for assessments, generally).
There are also some cases where your state’s laws may also require a provider to report, or automatically share diagnoses or other certain information to registries or inter-agency health-record systems. Because this isn’t always apparent up-front (it may be buried in consent papers), it’s good to ask any provider you work with about those before engaging in services.
Other than those limitations, your assessment results should stay between you and the provider, plus whoever you consent to share with. This said, follow-up questions about confidentiality are always welcome with me!
Your Rights to Your Records
One final tip that doesn’t exactly fit anywhere above, but which you should know is that while providers are the custodians of your medical records, your healthcare records actually belong to YOU. That means that you can request—and expect to receive in a timely way—copies of any records about yourself. If you consider something in your file to be incorrect or incomplete, you also have the right to have your correction/addition added in your file. If you want to see appointment notes, assessment reports, and results, you have the right to request that.
Caveats are that some assessments are protected by the publisher’s copyright, so that a provider would have to go over results with you synchronously rather than sending them to you outright (because they can’t give you the questions themselves)—but you should still be able to learn about your results. And if a provider has concerns that you seeing what’s in your file might somehow be harmful to you, you might have to negotiate a satisfactory solution (or press the issue, if you disagree with their reservations).
I hope this is helpful for adults thinking about seeking formal Autism/ADHD assessment. If after learning all this, you’re interested in moving forward with an assessment, you might consider learning more about my approach, or reaching out to schedule.