Pros and cons of formal diagnosis

Below is a collection of all the pros, cons, and myth corrections I can find related to formal assessment, which I’ll update as I learn more.

Note: I’m only able to report here what others share, as I’m not a lawyer and do not have direct experience with many of the topics below. Use this as a starting-point for your own research and questions.

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, some of which are available only with a diagnosis. You may also get support for prescriptions 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 can asked about difficult parts of your experience. (However, I don’t believe assessments should be infantilzing—I’m looking at you, ADOS. I also don’t agree with the practice of deliberately creating discomfort in an assessment as a way to identify traits; traits can be identified in what is comfortable for people!)
If you are receiving or will be seeking gender-affirming healthcare, some diagnoses may create barriers depending on the laws of your area. This is becoming an increasing concern in the US these days.
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.) In the US there is uncertainty about a national list potentially being created from unknown sources.
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 Do

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, except 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.
A diagnosis isn’t entered in a “permanent record,” per se. Healthcare providers only legally have to maintain records for a certain number of years (depending on their profession and states — in my case, that’s 7 years) after which records may (but not “must”) be destroyed securely. 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 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.

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More About Confidentiality

Relating to many of the above concerns, confidentiality is an important consideration. Your assessment records are confidential—and confidentiality does have limits.

Confidential information can be shared in the following situations:

When you give specific written consent for a provider to disclose information about you
In response to a judge’s order
If you use insurance to cover costs (even out-of-network)
Between providers to support diagnosis and treatment
If it would prevent imminent harm to oneself or someone else

There are also some cases where your state’s laws may 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 might 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.

…All that said, follow-up questions about confidentiality are always welcome with me!

Your Rights to Your Records

One final tip that may be helpful to know is that while providers are the custodians of your medical records, in many states and professions your healthcare records actually belong to YOU.

Under "HIPAA" (the Health Insurance Portability and Accountability Act), you have important privacy rights that are summarized on the US Health and Human Services website , as follows:

“The Privacy Rule gives you, with few exceptions, the right to inspect, review, and receive a copy of your medical records and billing records that are held by health plans and health care providers covered by the Privacy Rule.

Access

Only you or your personal representative has the right to access your records.

A health care provider or health plan may send copies of your records to another provider or health plan only as needed for treatment or payment or with your permission.

The Privacy Rule does not require the health care provider or health plan to share information with other providers or plans.

HIPAA gives you important rights to access your medical record and to keep your information private.

Charges

A provider cannot deny you a copy of your records because you have not paid for the services you have received.

However, a provider may charge for the reasonable costs for copying and mailing the records. The provider cannot charge you a fee for searching for or retrieving your records

Provider’s Psychotherapy Notes

You do not have the right to access a provider’s psychotherapy notes.

Psychotherapy notes are notes that a mental health professional takes during a conversation with a patient. They are kept separate from the patient’s medical and billing records. HIPAA also does not allow the provider to make most disclosures about psychotherapy notes about you without your authorization.

Corrections

If you think the information in your medical or billing record is incorrect, you can request a change, or amendment, to your record. The health care provider or health plan must respond to your request. If it created the information, it must amend inaccurate or incomplete information.

If the provider or plan does not agree to your request, you have the right to submit a statement of disagreement that the provider or plan must add to your record.”

- from the US Department of Health and Human Services

Some caveats to your access may include:

Some publishers do not permit people without the correct qualifications to have assessment materials, so instead of being given those records, you might have to review your results directly with the provider. They may be able to provide the documents to other qualified providers at your request.
If a provider has concerns that what’s in your file might somehow be harmful for you to review, you might have to negotiate a satisfactory solution such as a case summary—or press the issue, if you disagree with their concern.

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I hope this information serves you well in your decision-making. If you want to move forward, or just consult about what to do, feel free to reach out. I’d be honored to support you.

Learn more about my assessment options

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Assessment Considerations

Is formal diagnosis of Autism/ADHD right for you?

Self-identification/self-diagnosis

Types of assessments

Pros and cons of formal diagnosis

Reasons Why You May Want a Diagnosis

**Reasons You Might Not Want a Diagnosis**

Nuance—What a Diagnosis Doesn’t Necessarily Do, but Might Do

More About Confidentiality

Your Rights to Your Records

Access

Charges

Provider’s Psychotherapy Notes

Corrections

Assessment Considerations

Is formal diagnosis of Autism/ADHD right for you?

Self-identification/self-diagnosis

Types of assessments

Pros and cons of formal diagnosis

Reasons Why You May Want a Diagnosis

Reasons You Might Not Want a Diagnosis

Nuance—What a Diagnosis Doesn’t Necessarily Do, but Might Do

More About Confidentiality

Your Rights to Your Records

Access

Charges

Provider’s Psychotherapy Notes

Corrections

Conclusion

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**Reasons You Might Not Want a Diagnosis**