What Organizations Need To Know About Aging In Adults With Autism

Part of the Essentials of Dementia Capable Care Series

Jeff Owens - contact[AT]autism-101.com

This presentation uses “Identity-First” language to refer to others with Autism .

Presentation available at: https://slides.autism-101.com

Who Are You?

• I’m Jeff Owens
• I’m a late diagnosed autistic person

I grew up feeling like an alien, inhabiting the wrong planet.

Which is why Mr. Spock became my favorite TV character.

Spock likes cats.

And I like cats. (Ginger & Jet)

Spock likes chess.

And I like chess.

Spock likes computers, and so do I.

Spock likes music.

And so do I.

Spock has trouble understanding his emotions, and so do I.

Last year I received the “Live Long and Prosper” award from the Nimoy-Knight Foundation.

Which was a great honour for me. Past recipients include Dr. Temple Grandin, Billie Jean King, and Whoopie Goldberg.

I drink coffee from my Star Trek mug every day.

And I use a Star Trek mousepad.

I like detective shows.

I love music composed by John Williams.

I run the Autism-101.com website.

As well as AutismInTheMedia.com.

What Is Autism ?

• Autism is a neurological and developmental difference
• It is naturally occurring
• It is not a disease 😷
• It can’t be cured
• It has always existed

Autistic People Differ

“If you have met one autistic person
you have met one autistic person.” ^[1]

— Dr. Stephen Shore (Autism advocate)

Why Is This Important Now?

• The “Graying” of the population globally.^[2]

• The first generation diagnosed as children are now entering middle age.^[3]

• The massive, previously unidentified group of people aged 50-80+.^[4]

• A critical lack of research and services for autistic seniors.^[5]

The Timeline of Invisibility

Why didn’t they get diagnosed 40 years ago?

• 1943-1944: Kanner & Asperger define the condition (mostly in children).
• 1980 (DSM-III): “Infantile Autism ” enters the DSM. Strict criteria.
• 1994 (DSM-IV): Asperger’s Syndrome added. The beginning of broader recognition.
• 2013 (DSM-5): ASD becomes a spectrum; allows for adult diagnosis more easily.

“We aren’t part of an epidemic.
We are part of an awakening.”

— Autism-101

ASD Support Levels

• Level 1 - requires support
• Level 2 - requires substantial support
• Level 3 - requires very substantial support

First Person Diagnosed in U.S.

Donald Triplett - was diagnosed by Leo Kanner in 1943

Donald Triplett

• Born: Forest, Mississippi in 1933.
• College: he graduated with a bachelor’s degree in mathematics and French.
• American Banker: he worked for 65 years at a local bank.
• Music: he had perfect pitch.
• Savant: he could do rapid mental multiplication.
• Book: featured in the book, In a Different Key, later adopted into a documentary.

Who Are “Older Autistic Adults”?

Today, we are focusing on those 50+, but specifically two groups:

• Diagnosed early: now aging.
• “Lost Generation”: diagnosed late in life, or still undiagnosed.

Why Were They Missed?

• Diagnostic criteria historically focused on young, white males with high support needs.^[6]
• Masking or Camouflaging to survive education and employment.

• Traits attributed to other things: “quirky,” “shy,” “difficult,” or misdiagnosed with personality disorders/anxiety.

What Triggers a Late Diagnosis?

Often, a life event drastically alters the person’s capacity to cope:

• Burnout: Decades of masking finally depletes energy reserves.
• Hormonal Shifts: Perimenopause and menopause can intensify sensory/executive function struggles.
• Major Transitions: Retirement, becoming an empty nester, or loss of a spouse removes stabilizing routines.
• The “Genetic Mirror”: Seeing their own traits while their child or grandchild is being assessed.

Case Study: “Susan” (Age 64)

• Background: Retired librarian. Always called “shy” and “rigid.”
• The Trigger: Husband passed away 2 years ago. The loss of his support (handling bills, driving, social buffer) caused a collapse.
• The Misdiagnosis: Diagnosed with Treatment-Resistant Depression and Early Onset Dementia due to “confusion” (which was actually brain fog and burnout).
• The Realization: Read a memoir by an autistic woman and recognized herself.

Autism and Intellectual Disability (IDD)

• Overlap: A significant portion of autistic adults also have a diagnosis of Intellectual Disability (30-40%).^[8]
• Complexity: Aging impacts functional skills differently when neurodivergence and IDD co-occur.^[9]
• Support Needs: High support needs may shift from educational/vocational to clinical and residential as the person ages.^[10]

The DS-ASD Profile

• Down Syndrome and Autism (DS-ASD) Individuals with Down Syndrome have a significantly higher prevalence of Autism than the general population.^[11]
• Unique Presentation: Social-communication challenges may be more pronounced than in peers with Down Syndrome alone.^[12]
• Organizational Insight: Care protocols must be tailored to both the genetic profile and the autistic sensory profile.^[13]

APP Gene On Chromosome 21

Location of the APP gene on chromosome 21 in humans

Alzheimer’s and Dementia Risks

• Heightened Risk: Autistic adults with IDD have nearly 3 times the risk of early-onset Alzheimer’s compared to non-autistic peers.^[14]
• Down Syndrome Link: Due to the APP gene on chromosome 21, nearly all adults with Down Syndrome exhibit Alzheimer’s pathology by age 40.^[15]
• Diagnostic Overshadowing: New dementia symptoms are often wrongly attributed to “just their Autism ” or “typical IDD behavior”.^[16]

Co-occuring Conditions

• Will likely have other issues
• Ex. ADHD may occur in 40% or more of autistic people ^[17]

Sensory Differences

“Processing everyday sensory information can be difficult for autistic people. Any of their senses may be over- or under-sensitive, or both, at different times.” ^[18]

— NAS

Sensory Profiles

• Unique to individual
• Hyposensitive, hypersensitive, or both
• Can change day to day
• Are well outside the normal ranges
• Impacts what we like to do

Do Sensory Issues “Mellow” With Age?

Short Answer: No. They often become harder to manage.

• Older autistic adults report lower ability to “cope” with sensory input. The energy used to “mask” or “push through” in their 30s is gone.^[19]
• Age-related hearing/vision loss increases cognitive load. The brain works harder to interpret data, leading to faster overload.^[19]
• After age 40, the autistic nervous system may regulate stress less efficiently, making sensory triggers feel more physically painful.^[19]

The “Double Whammy”

Aging and Autism interact bidirectionally:

• Aging processes: Cognitive slowing and physical decline can exacerbate autistic traits like sensory sensitivity and executive dysfunction.^[19]
• Dementia Interaction: Early signs of dementia may first appear as a sudden loss of “coping skills” or an increase in sensory meltdowns.^[20]

Diagnostic Overshadowing

• The Barrier: Clinicians may ignore new health issues (like pain or cognitive decline) because they focus only on the developmental disability.^[21]
• Communication: Non-speaking or minimally-verbal adults may express pain or dementia-related confusion through “challenging behaviors”.^[22]
• Organizational Task: Staff must be trained to look for changes in baseline behavior as medical indicators.

Healthcare Barriers

• Communication Mismatches: Difficulty describing pain accurately; doctors misinterpreting flat affect or direct/blunt communication as non-compliance.^[23]
• Sensory Overload in Clinics: Bright lights, waiting rooms, and physical exams can lead to care avoidance.
• Co-occurring Conditions: Higher rates of anxiety, depression, GI issues, and sleep disorders often complicate geriatric care.^[24]

Sensory and Cognitive Shifts

• Sensory: Natural age-related hearing/vision loss combined with autistic sensory processing differences can be overwhelming and disorienting.
• Executive Function: Aging impacts working memory and processing speed. For an autistic brain already working hard to organize, this can lead to significant functional decline quickly.
• Burnout Recovery: Bouncing back from sensory or social overload takes significantly longer at 60 than at 30.

Shrinking Support Networks

• Loss of “Buffers”: Many older autistics relied heavily on parents or a spouse to navigate the social world. Losing them is catastrophic.
• The “Group Home” Fear: Intense fear of losing independence and ending up in communal senior living, which is rarely sensory-friendly.
• Financial Vulnerability: Due to lifetime underemployment (common in the lost generation), financial resources for aging may be scarce.

“Autistic Advantages” in Aging

Many older autistic adults possess unique resilience factors:

• Solitude as Strength: Often better equipped to handle alone time than neurotypical peers.
• Passionate Interests: “Special Interests” provide deep engagement, cognitive protection, and joy.
• Non-Conformity: Less pressure to keep up with societal expectations of “how to act”” at 50+“.

Organizational Supports: Sensory Audits

• Evaluating the Environment: for Dementia-Capable Care.
• Visual: Reduce flickering fluorescent lights and high-contrast patterns that cause disorientation.
• Auditory: Identify and mitigate “background” hums (HVAC, machines) that increase cognitive load.
• Tactile: Ensure clothing and bedding textures remain consistent to prevent sensory-driven distress.

Communication Protocols

• Direct and Literal: Avoid metaphors or vague instructions; autistic people with dementia need “processing time”.
• Visual Aids: Use schedules and pictures to reduce the load on working memory.
• Stabilization: Routine is a clinical tool. Predictable environments reduce the anxiety associated with cognitive decline.

Moving Forward: Neuro-Affirming Care

• Preserving Energy: Unmasking and sensory aids (headphones, stimming) are energy-conservation tools for seniors.
• “Nothing About Us Without Us”: Even those with advanced dementia or IDD should have their preferences and sensory comfort prioritized.

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Check Your Knowledge

Question 1

True or False:

The “Double Whammy” refers to the bidirectional interaction where age-related cognitive slowing can intensify lifelong autistic traits like sensory sensitivity.

TRUE

Question 2

True or False:

Autistic adults with Down syndrome (DS-ASD) may follow a different aging trajectory, including a higher risk for early-onset Alzheimer’s disease.

TRUE

Question 3

True or False:

“Diagnostic overshadowing” occurs when a clinician mistakenly attributes new dementia symptoms to a person’s pre-existing autism or IDD.

TRUE

Question 4

True or False:

Sensory issues in autistic adults usually resolve by age 65, making sensory-friendly environments less critical in senior care settings.

FALSE

Sensory processing issues often persist or intensify with age.

Question 5

True or False:

Because of communication mismatches, an autistic person may express physical pain or dementia-related distress through “behaviors” rather than verbal reports.

TRUE

Question 6

Multiple Choice:

Which organizational support is most effective for reducing “burnout” in aging autistic adults with IDD?

• A) Increasing the number of mandatory group social activities.
• B) Performing “sensory audits” of living spaces to reduce lighting and noise triggers.
• C) Requiring the person to “mask” their traits to fit into a standard nursing home.
• D) Limiting access to “special interests” to encourage broader social interaction.

CORRECT ANSWER: B

Question 7

Multiple Choice:

In the “Lost Generation” of autistic seniors (aged 50+), a common trigger for a late-life functional collapse is:

• A) The loss of a primary “social buffer” or caregiver, such as a parent or spouse.
• B) A sudden interest in new, high-energy hobbies.
• C) Moving to a more crowded, urban environment.
• D) Reaching the age of official retirement.

CORRECT ANSWER: A

Question 8

Multiple Choice:

For organizations supporting adults with both Autism and Alzheimer’s, clear communication should prioritize:

• A) Abstract metaphors to explain medical procedures.
• B) Literal, direct language with extra time allowed for cognitive processing.
• C) Rapid-fire instructions to keep the person engaged.
• D) Relying solely on non-verbal cues.

CORRECT ANSWER: B

Question 9

Multiple Choice:

Why is “Unmasking” considered a healthy aging strategy for autistic adults?

• A) It helps them blend in better with neurotypical peers.
• B) It helps them develop more “typical” social skills.
• C) It preserves limited energy reserves by stopping the exhausting performance of “neurotypicality.”
• D) It is only useful for children, not seniors.

CORRECT ANSWER: C

Question 10

Multiple Choice:

A “Neurodiversity-Affirming” approach to geriatric care for those with IDD means:

• A) Focusing entirely on “curing” autistic behaviors.
• B) Validating the individual’s lived experience and identity without demanding a “cure.”
• C) Only providing support to those with a formal childhood diagnosis.
• D) Designing programs that treat all seniors exactly the same regardless of neurology.

CORRECT ANSWER: B