Turning Points: Navigating Mental Health

Episode: Unmasking Diagnoses Later in Life: Autism and ADHD in Adults (S4E4)

Release Date: October 9, 2024
Host: Frances Lease, Tufts Health Plan | Boston Globe Media

Brief Overview

This episode shines a spotlight on adults who receive an ADHD or autism diagnosis later in life. Through deeply personal stories and expert insights, the show explores what it means to realize, often decades into adulthood, that the daily struggles and self-criticisms one faces have a name—and how this realization can reframe an entire life. The episode features:

• The lived experience of Grace, a late-diagnosed autistic woman with ADHD
• Psychiatrist Dr. Thor Bergerson on the systemic barriers to adult diagnosis
• Journalist and author Eric Garcia on shifting the autism narrative from “fixing” to accepting and supporting

Key Discussion Points & Insights

Grace’s Story: Discovery and Transformation

00:09–09:40

• Early Career Struggles:
  Grace recounts starting her career in public teaching, encountering overwhelming challenges, and feeling unsupported. “I can look back now and say that some of the problems I had as a teacher, I felt at the time that it was all my fault.” (00:30–00:38)

• Diagnosis as Turning Point:
  Her diagnosis of ADHD and autism at age 35 recontextualized a lifetime of feeling “consistently inconsistent”—a label her husband gave her early in their marriage. She describes the internal conflict:

  “Autism says get it done right now... stick to the standards... My ADHD says I don’t give a rat’s fanny. I’m going to do what I want.” (02:05–02:34)

• Path to Diagnosis:
  The spark for self-recognition came when her daughter was flagged as possibly neurodivergent. Grace read her daughter’s ADHD symptom list and realized:

  “I have every one.” (02:52)
  She sought diagnosis, remarking, “It was eye opening, it was transformative. No, I still make a lot of mistakes, but at least now I understand why.” (03:30–03:57)

• Lack of Support and Family Resistance:
  Both her older daughter and her spouse struggled to accept her diagnosis, compelling Grace to navigate the journey alone:

  “As I was going through the discovery phase, I won’t call it a honeymoon because there’s nothing sweet about it… I had zero support. I really worked at it alone in the beginning.” (04:13–04:55)

• Resilience and Identity:
  Grace found tenacity within herself, driven by a sense of justice and refusal to let challenges derail her goals:

  “When I realized this is identifiable… this is something I can learn about.” (05:09–05:54)

• Friendships and Finding Her Tribe:
  She reflects on how friendships operate for her:

  “Squirrels like me, we burn through friendships… But when I made a friend that we were sharing the same characteristics… talking really helps. Misery loves company… My squirrel friends that I met over the past 20 years, we’re still best friends because of that bond.” (06:10–07:30)

• What Diagnosis Changed:
  Grace likens ADHD to “being in a slow rainfall of post-it notes,” describing both the challenges and clarity of self-understanding:

  “A diagnosis is not an end all. That’s just the key. You still have to open the door. You still have to walk into the room.” (08:54–09:40)

Dr. Thor Bergerson: Systemic Barriers and Misconceptions

10:27–18:54

• Genetic Roots and Family Patterns:
  Dr. Bergerson’s research began with structured interviews in families of diagnosed children, quickly revealing ADHD’s strong genetic component. (10:27–11:42)

• Barriers to Diagnosis:

  • Diagnosis often depends on being sufficiently “disruptive”—especially for boys—leaving many undiagnosed if they present as quiet or simply underperforming.
  • Economic inaccessibility of private neuropsychological testing and limited insurance coverage
  • Shortage of psychiatrists familiar with ADHD, particularly for adults:

    “There are disruptive barriers, economic barriers, there’s the stigma… There’s a pretty slim chance I think you’ll be diagnosed.” (11:55–13:53)

• Presentation in Adults:
  Most adults enter treatment due to depression, anxiety, or persistent gaps between intent and achievement—often at the urging of someone close. The underlying ADHD frequently goes unrecognized because:

  “There’s a gap between what they know they can do and what they actually do. And that gap is always pretty big and consistent.” (14:15–15:21)

• Misconceptions About ADHD:

  • Not always about hyperactivity or disruptiveness
  • Unrelated to intelligence
  • Medication is not always required, and is not inherently addictive
  • “It’s not a personal weakness,” as many believe

    “I see a ton of very intelligent people with ADHD. It’s just a matter of like, making things come to fruition that you think about.” (15:41–16:40)

• Advice for Suspected ADHD in Adults:
  Dr. Bergerson suggests starting with routines for sleep, movement, and nutrition. If basic routines remain a challenge, it’s worth seeking professional assessment:

  “If you think it’s like holding you back and it’s making you unhappy, then it’s worth talking to somebody about.” (17:45–18:54)

Eric Garcia: Shifting the Narrative on Autism

19:46–27:09

• Critiquing the “Cure” Approach:

  “We focus too much on trying to cure autistic people, not enough of trying to help them live fulfilling lives.” (19:46)
  Eric’s journalistic and personal lens challenges decades-old misinformation, noting how autistic people’s voices have been largely excluded from shaping policy.

• History and Diagnostic Blind Spots:
  Autism was not even recognized as a distinct diagnosis in the DSM until 1980; misdiagnosis and misunderstanding were rampant:

  “It was often seen as a symptom of schizophrenia. You’d see autism and childhood schizophrenia kind of used interchangeably.” (21:12–21:36)

• Disparities in Diagnosis and Cultural Stereotyping:

  • Black and Latino children are frequently misdiagnosed with behavioral disorders instead of autism
  • Assigned-female children’s symptoms often overlooked, as shyness or intense interests don’t “fit the stereotype”

• Importance and Limits of Self-Diagnosis:
  Social media (e.g., TikTok) provides community and visibility, but cannot replace a clinical evaluation. Still, Eric affirms self-diagnosis as valid, particularly for those who lack access to formal diagnosis:

  “I think self diagnosis is valid for all the reasons I just articulated… TikTok and Instagram are not a diagnostic tool. They’re a good way for you to connect with people… After that, you almost have to do your own homework.” (23:39–24:32)

• Strengths and Nuanced Perspectives on Autism:

  “The fact that neurodivergent people are so able to focus singularly on something is incredible… The same autism that makes me a good reporter is what lets me drive a car. Those things are not mutually exclusive.” (24:51–26:11)
  He cautions against excusing bad behavior as a feature of autism, emphasizing the importance of continued learning and humility:
  “If you have sincerity… and a desire to learn, that’s all you need.” (27:09)

Notable Quotes & Memorable Moments

• Grace, on the conflict of dual diagnoses:

  “Autism says get it done right now… My ADHD says I don’t give a rat’s fanny. I’m going to do what I want.” (02:05)

• Grace, on self-discovery:

  “I honestly believe that depression in people with ADHD is often situational… Because we make a hell of a lot of mistakes. Every day, all day long, I make mistakes. So me getting diagnosed, it was eye opening, it was transformative.” (03:10–03:57)

• Dr. Bergerson, on misconceptions:

  “It’s not a personal weakness. I think that keeps people from coming to see me.” (16:40)

• Eric Garcia, on shifting priorities:

  “We focus too much on trying to cure autistic people, not enough on trying to help them live fulfilling lives.” (19:46)
  “The same things that make me a good reporter… is the same autism that makes it possible for me to drive a car. Those two things are not mutually exclusive.” (26:11)

• Eric Garcia, on learning:

  “When you first start learning about autism… you’re going to mess things up… If you have sincerity, you have a willingness and a desire to change and to learn, that’s all you need.” (27:09)

Important Timestamps

• 00:09 – Grace describes her teaching career and struggles
• 01:16 – Grace’s diagnosis of ADHD and autism
• 02:05 – Internal conflict between ADHD and autism
• 02:52 – Discovery via daughter’s symptom checklist
• 04:13 – Family reaction and support
• 06:10 – “Squirrel” friendships and finding community
• 07:53 – Rainfall of post-it notes analogy
• 10:27 – Dr. Bergerson: background and genetic findings
• 11:55 – Barriers to diagnosis (“disruptive enough,” economic barriers)
• 14:15 – Adult presentation of ADHD
• 15:41 – Busting misconceptions about ADHD
• 17:45 – Advice for undiagnosed adults
• 19:46 – Eric Garcia: motivation for writing about autism
• 21:12 – History of autism diagnosis
• 23:39 – Self-diagnosis and social media
• 24:51 – Strengths of neurodivergent people
• 27:09 – Emphasis on humility and continued learning

Episode Takeaways

• Receiving a late diagnosis can be a revelation—but comes with its own challenges, such as a lack of support, self-doubt, and outdated social perceptions.
• Supportive communities—whether “squirrel friends” for ADHDers or online groups for autistic adults—are critical for healing and growth.
• Longstanding misconceptions, economic barriers, and systemic biases keep many from accurate diagnoses.
• Viewing neurodivergence through a lens of acceptance and individualized support, not “fixing,” is key to empowering those with ADHD and autism.
• Expert advice suggests routines, self-education, and seeking assessment if symptoms are disruptive to one’s happiness.