Navigating Autism and ADHD Diagnosis Privacy Amid Policy Changes

This article offers general information only and is not medical, legal, or financial advice. Life Skills Advocate is not affiliated with any political party. Our mission is to uplift the neurodivergent community to embrace their strengths and self-advocate with confidence. Use this information at your own risk, and please consult a qualified professional (e.g., a developmental pediatrician, clinical psychologist, attorney, etc.) for advice on your specific circumstances.

Current as of October 31, 2025. We’ll revisit and update this article as significant policy changes occur.

Are recent policy changes making you uncertain about pursuing a diagnosis for yourself or a loved one?

New policies have raised concerns about autism and ADHD diagnosis privacy, insurance coverage, and equitable access for people with autism, ADHD, and other neurodivergent diagnoses.

While some of these developments are still unfolding, there are concrete facts you can use to make informed decisions.

This article provides a clear, factual overview of current political and policy issues affecting autism, ADHD, and related neurodevelopmental diagnoses. You’ll find insights into what’s happening, why it matters, and how to respond confidently as an individual, family member, or professional.

Understanding Key Healthcare Policies

Medicare

Medicare is a federal health insurance program mainly for adults aged 65 and older. Some younger adults with permanent disabilities or certain conditions (such as end-stage renal disease or ALS) may also qualify. Medicare has four parts: A, B, C, and D. Each covers different services, from inpatient hospital stays to outpatient care and prescription drugs.

Medicaid

Medicaid is a joint federal–state program that helps people with low income pay for health care (see p. 3 of the linked guide). Unlike Medicare, Medicaid eligibility is based on income and it serves people of all ages, including children, adults, older adults, and people with disabilities. Medicaid covers a wide range of services such as doctor visits, hospital stays, nursing home care, and home-based care. Each state runs its own Medicaid program, so specific benefits and coverage details vary by state. Some individuals qualify for both Medicare and Medicaid. This is called dual eligibility (see p. 4).

HIPAA

The Health Insurance Portability and Accountability Act (HIPAA) of 1996 is a federal law that protects the privacy and security of people’s medical information. It requires healthcare providers, insurance companies, and other covered entities to keep personal health information (PHI) confidential. Under HIPAA, your information can generally be used or shared only for treatment, billing, or other essential healthcare operations. In most other cases, your written permission is needed to disclose your health details. However, certain exceptions apply (for example, disclosures required by law, for public health reporting, or during a court proceeding). You can read more in HHS’s Summary of the HIPAA Privacy Rule.

What HIPAA Allows: Examples of permitted disclosures without your consent

• Public health activities: Reporting certain diseases, exposures, or vital statistics to public health authorities (for example, disease control agencies) (45 CFR 164.512(b)).
• Law enforcement purposes: Disclosing limited information to law enforcement under specific conditions (for example, to comply with a court order or to help identify a suspect or missing person) (45 CFR 164.512(f)).
• Research: Using or disclosing PHI for research if approved by an Institutional Review Board or privacy board waiver, or by providing a limited data set for research purposes (45 CFR 164.512(i)).
• Limited data sets: Sharing a partially de-identified data set (with most direct identifiers removed) for public health, research, or healthcare operations, under a data use agreement (45 CFR 164.514(e)).

Recent Policy Developments

Below are summaries of some recent developments that are important to consider for this topic.

Autism Research Initiatives

On February 13, 2025, the President signed Executive Order 14212, “Establishing the President’s Make America Healthy Again Commission.” This order created a federal commission to investigate the rising prevalence of chronic diseases in the United States. The commission, chaired by the Secretary of Health and Human Services, was tasked with examining potential contributing factors such as environmental toxins, medications, diet, and other influences on public health. Autism and ADHD are explicitly named in the Executive Order as health conditions on the rise that warrant investigation. HHS later posted the commission’s 100-day assessment (May 2025) and a national strategy (September 9, 2025) describing more than 120 initiatives.

Potential Changes to Federal Medicaid Funding

Medicaid is jointly funded by states and the federal government. The federal contribution to each state’s Medicaid costs is determined by a formula called the Federal Medical Assistance Percentage (FMAP). By law, a state’s FMAP ranges from a minimum of 50 percent to as much as 83 percent of costs, with lower-income states getting a larger federal share.

On April 10, 2025, Congress adopted H.Con.Res. 14, a non-binding budget resolution for fiscal year 2025. It lays out a ten-year budget blueprint and instructs committees to propose deficit-reduction legislation. Analyses of the plan discuss scenarios with substantial Medicaid savings over 2025–2034, but the resolution itself does not change any law. Any future Medicaid changes would require separate legislation. If federal contributions are reduced in the years ahead, access to evaluations, therapies, and long-term supports could be affected, especially for neurodivergent individuals who rely on Medicaid.

Common Concerns

The following concerns have been raised by members of the neurodivergent community in response to these policy developments.

Access to Services

Potential caps or reductions in federal Medicaid funding could limit access to evaluations, therapies, and services. Any reduction in resources would disproportionately impact people facing financial hardship or living with disabilities. If programs tighten eligibility or reimbursement, families might encounter longer waitlists, fewer service providers, or new out-of-pocket costs.

Diagnosis Privacy: Protecting Autism and ADHD Records

There is growing concern about how personal medical information, including diagnoses of autism, ADHD, and other neurodevelopmental conditions, might be collected, stored, or shared as health data systems evolve. Health records are protected under laws like HIPAA (for medical providers) and FERPA (for school records). At the same time, some states have passed new laws to cover health-related data that falls outside of doctor’s offices or schools. For example, Washington’s My Health My Data Act (2023) protects consumer health data not covered by HIPAA. Nevada’s SB 370 (effective March 31, 2024) adds strict requirements for companies that collect or sell consumer health data. Colorado adopted 2025 updates to its privacy law to increase protections for biometric identifiers and minors’ online data. See HB 24-1130 and SB 24-041.

Representation and Public Understanding

Some community members are concerned that public discussions and research about autism may focus too much on “preventing” or reducing autistic traits rather than on support and acceptance. When autism is framed primarily as a burden, it can fuel misinformation and overlook strengths. Including autistic voices in policy decisions and promoting acceptance alongside support can improve outcomes.

Next Steps: Making Informed Choices About Diagnosis Privacy

There isn’t a simple answer on the long-term privacy or policy implications of seeking a medical diagnosis for ADHD or autism. Once a diagnosis is documented in a health record, there is concern it could be accessed or used later in ways beyond the patient’s intent. Current protections under HIPAA and FERPA are strong, but future policies could affect how information is shared.

Weigh privacy concerns against the real risks of not pursuing a diagnosis. Delaying evaluation can mean missing out on helpful interventions, educational supports, therapies, or insurance coverage. For many children and adults with autism or ADHD, an official diagnosis is the gateway to school supports, therapies, or medication.

School vs Medical

• Medical diagnosis: A clinical diagnosis (for example, from a psychologist or physician) guides treatment and is often required for insurance to cover certain therapies or medications.
• School services: Schools do not require a medical diagnosis to provide support. Under IDEA and Section 504, a student qualifies based on an educational evaluation showing that a disability affects learning or functioning at school. Educational records are protected by FERPA. For guidance, see the ED/HHS joint guidance on FERPA and HIPAA and the OCR Section 504 FAQ.

Stay informed by reviewing your state’s eligibility rules, keeping up with legislative developments, and connecting with advocacy organizations. Aim for decisions that balance needed support with reasonable privacy precautions.

Managing Anxiety About Policy Changes

With many unknowns, it’s common to feel worried about what policy shifts might mean for the future. Whether you are an adult with a long-standing diagnosis or a parent seeking answers for your child, concerns about safety, privacy, and long-term implications are understandable.

Protect Your Mental Health

Be intentional about how you engage with news. According to the American Psychological Association, frequent exposure to stressful news can increase anxiety. Consider limits on when and how often you check the news, take breaks from social media, and schedule check-ins with people you trust. Grounding activities such as walking, hobbies, or mindfulness can also help.

Avoiding Learned Helplessness

Learned helplessness is when repeated negative outcomes lead a person to believe their actions no longer matter. Small proactive steps can counter that feeling. Talk with a trusted healthcare provider, join a support group, or speak with a disability rights advocate. Focus on what you can do now, such as requesting school supports or exploring therapies available under current programs.

Additional Resources

Create News Consumption Boundaries

If you feel overwhelmed by current events, set boundaries around when and how you consume news. The New York Times Learning Network offers a practical lesson plan on improving your “news diet”.

Workbook for Coping with Bad News

Many children and students feel anxious about upsetting news. This workbook by Dawn Huebner, PhD (2019), offers clear, age-appropriate guidance for parents, educators, and professionals. It includes practical exercises and conversation starters to help kids process difficult events.

Policy Timeline at a Glance

TL;DR – (Too Long; Didn’t Read)

In early 2025, a federal commission was established to investigate rising chronic health conditions, including neurodevelopmental conditions like ADHD and autism. HHS later released a national strategy with more than 120 initiatives. Congress also adopted a non-binding budget blueprint that discusses large federal savings, including possible Medicaid changes, but the resolution itself does not change any law. If future legislation reduces federal Medicaid contributions, access to evaluations and services could be affected.

People are also concerned about health data privacy. HIPAA and FERPA protect medical and school records, and several states have added protections for consumer health data outside traditional healthcare settings. Delaying a diagnosis can mean missing out on therapy, school accommodations, and insurance-covered treatments. Stay informed, know your rights, and make decisions that balance support with privacy.

Further Reading

• American Psychological Association (2022) – Media overload is hurting our mental health. Here are ways to manage headline stress
• Centers for Disease Control and Prevention (2022) – Health Insurance Portability and Accountability Act of 1996 (HIPAA) – Summary
• Centers for Medicare & Medicaid Services (2023) – What are Medicare & Medicaid? (Understanding the Basics)
• Congressional Research Service (2025) – Medicaid’s Federal Medical Assistance Percentage (FMAP)
• Congress.gov (2025) – H.Con.Res. 14 – FY2025 Budget Resolution
• Dawn Huebner (2019) – Something Bad Happened: A Kid’s Guide to Learning About Events in the News
• Harvard Library (2025) – News Media Across the Political Spectrum
• National Library of Medicine (2016) – Learned Helplessness
• The White House (2025) – Establishing the President’s Make America Healthy Again Commission (Executive Order 14212)
• U.S. Department of Health & Human Services (2025) – MAHA Commission: National Strategy
• U.S. Department of Health & Human Services – HIPAA Privacy Rule (National Priority Exceptions)