Wondering if you’re Autistic?

Formal Diagnosis vs. Self-Diagnosis

Some adults wonder whether they should pursue a formal autism diagnosis, especially if they have lived without one for their entire lives. This is a personal decision, and there is no wrong choice!

Although a formal evaluation comes with some benefits, there are several barriers to going this route. Because of this, many people ultimately decide to self-identify as autistic after thoroughly looking into autism and reflecting on their own experiences. This may be referred to as "self-diagnosis." While self-diagnosis is not recognized as a medical diagnosis and does not provide access to certain resources and supports, it is generally accepted within the autistic community and can be incredibly meaningful to individuals.

Here are some things you might consider:

Pros of getting a formal evaluation:

• Access to supports, services, and protection under the Americans with Disabilities Act (ADA)
• Better understanding of yourself, including your personal strengths and challenges

Cons and barriers to getting a formal evaluation:

• Cost (varies greatly and can depend on insurance)
• Time (several hours, potentially over the course of multiple days)
• Waitlists
• Risk of feeling dismissed or unheard, or being told you don't meet diagnostic criteria

You may want a formal diagnosis if:

• You need a specific type of therapy that is only available to those with an autism diagnosis.
• You need to access disability services and legal protections offered through the federal government or your state.
• You need an autism diagnosis to access funding for services (e.g., health insurance, grants, government programs).

You may not need to pursue a formal diagnosis if:

• You are already receiving or able to access the support you need (e.g., therapy, disability services) based on another mental health or medical diagnosis.
• You have a strong social support network (e.g., friends, family, neurodiversity-affirming work environment).
• You are primarily interested in connecting with other autistic people.
• You are concerned that a formal autism diagnosis may result in difficulties (e.g., barriers to enlisting in the military, complicated custody issues in the context of a divorce).

Because every autistic person is different, a diagnosis can result in a variety of feelings. For instance, you might feel relieved to finally understand why you always felt different from others. A diagnosis may also help you recognize that the difficulties you face are not personal failures. You may feel truly seen and understood for the first time in your life. Often, autistic people learn to "mask" their symptoms, which can be emotionally and physically draining; sometimes, an autism diagnosis allows people to feel permission to be their authentic selves, which can be incredibly freeing.

You may also feel angry for being "missed" in childhood, and for feeling unsupported or misunderstood throughout your life. Some people worry about what a diagnostic label means for them and fear losing their individuality. It can also be overwhelming to figure out what supports you may need and how to navigate those systems.

It is also possible to experience a combination of both positive and negative emotions, and these feelings may ebb and flow over time. This is perfectly normal, and whatever you experience is valid.

When to Seek a Second Opinion

A good clinician should be able to explain their rationale for ruling a diagnosis in or out, including which criteria you do and do not meet for any diagnosis. The following are some signs that you may want to seek a second opinion:

• Your clinician automatically dismisses the possibility of autism rather than asking questions to better understand you.
• Your clinician suggests that autism does not affect certain groups of people (e.g., women, high-achieving people) or that autistic people cannot have successful social relationships (e.g., marriage, parenthood, friendships).
• Your clinician writes off the possibility of autism due to stereotypical assumptions (e.g., "You can't be autistic because you are making good eye contact"), which may be related to masking.
• Your clinician suggests that your intelligence level or verbal communication skills mean you cannot be autistic.
• Your clinician says that if you were autistic, you would have been diagnosed in childhood.
• Your clinician believes that there is no point in pursuing an autism evaluation as an adult (e.g., does not recognize supports and services available).

Additional Resources

General

• Autistic Women & Nonbinary Network (AWN) (awnnetwork.org)
• Autistics Unmasked – Autistics Advocating for Autistics and their guide to self-evaluation and navigating the clinical assessment process
• Autism Health and Wellbeing – Space for autistic people to share the things they have found helpful and healing
• Autism Diagnosis in Adulthood
• Adults - Support Groups & Community Connections Sessions – The Asperger / Autism Network (AANE)

Pursuing a Formal Diagnosis

• Should You Pursue a Diagnosis of Autism as an Adult Woman? | Psychology Today
• Am I Autistic? A Guide to Diagnosis for Adults - Autism Awareness (autismawarenesscentre.com)

Advocacy

• Autistic Self Advocacy Network (autisticadvocacy.org)
• Academic Autism Spectrum Partnership in Research and Education – Academic Autism Spectrum Partnership in Research and Education (aaspire.org)
• Spectrum Suite LLC - My Spectrum Suite

Books

• Sincerely, your Autistic Child: What People on the Autism Spectrum Wish their Parents knew About Growing up, Acceptance, and Identity by Autistic Women and Nonbinary Network
• Unmasking Autism: Discovering the New Face of Neurodiversity by Devon Price, PhD
• We're Not Broken by Eric Garcia
• What I want to Talk About: How Autistic Special Interests Shape a Life by Pete Wharmby
• Knowing Why: Adult-Diagnosed Autistic People on Life and Autism edited by Elizabeth Bartmes
• Life and Love: Positive Strategies for Autistic Adults by Temple Gradin
• Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman

Podcasts

• Uniquely Human: The Podcast
• Not Neurotypical with Laura Zdan
• The Autistic Life