New Findings on Older Autistic Adults Part I

3/28/2017

NEW FINDINGS ON OLDER AUTISTIC ADULTS

Eric Endlich, Ph.D. [email protected] Wilma Wake, LCSW [email protected] Robert Lagos, Statistician [email protected]

PART I:

SOCIAL JUSTICE AND AUTISM:

GROWING UP WITH NO NAME

Those born 1933 (or earlier) to 1967

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DR. LEO KANNER

1894 – 1981

1943: “Autistic Disturbances Of Affective Contact”

1944: “Early Infantile Autism”

Donald Triplett

Born: 1933

Diagnosed: 1943

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DONALD TRIPLETT IS 84!

Photos from The Atlantic, Autism’s First Child, John Donovan and Caren Zucker, Oct. 2010

DR. HANS ASPERGER

1906-1980

1943: Paper on 4 case studies of “Autismus”

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REFRIGERATOR MOTHERS

From POV/PBS documentary

KANNER HISTORY ASPERGER HISTORY 1900

1910 Bleuler: “Autistic Thinking” Erwin Lazar: Children’s Clinic

1920

1930 Donald Triplett Born Frankl emigrates from Germany; joins Asperger, “Autistic Psychopathy” 1st Kanner autism talk 1940 Kanner, Autistic Disturbances of Asperger, case studies on “Autismus” Affective Content

1950 Kanner, Refrigerator Mothers Asperger, Prof. at University Children’s Clinic 1960 Empty Fortress by Bettelheim 1970

1980 Facilitated Communication Hans Asperger dies Temple Grandin, “Emergence” Lorna Wing, “Asperger Syndrome” 1990 Wakefield, Autism caused by vaccines Asperger translated into English “Asperger” in DSM 2000 Autism Speaks: Seeking aCure 2010 Triplett turns 80 “Asperger” taken out of DSM

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EMPOWERED MOTHERS/FATHERS

RUTH SULLIVAN & SON JOE

Ruth Sulllivan and son Joe From Irish America Aug/Sept. 2016 by Tom Deignan

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BERNARD RIMLAND, PH.D.

EUSTACE CUTLER AND DAUGHTER TEMPLE GRANDIN

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LORNA WING

TEMPLE GRANDIN

1986: Her book Emergence is published Recognition of what an autistic person can accomplish

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RAIN MAN

 1988 film  Dustin Hoffman plays an autistic savant  Based on life of a real person  Dustin worked with autistic people to learn the part  Won 4 Oscars  Changed forever the public perception of autism

DR. ANDREW WAKEFIELD

1988

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KANNER HISTORY ASPERGER HISTORY 1900

1910 Bleuler: “Autistic Thinking” Erwin Lazar: Children’s Clinic

1920

1950 Kanner, Refrigerator Mothers Asperger, Prof. at University Children’s Clinic 1960 Empty Fortress by Bettelheim 1970

2006

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• How were we older autistics impacted by the events during the years we were growing up?

1930s & 40s: Some autistic babies were sent to institutions as part of the eugenics movement in U.S. …. And sometimes put to death by Nazis in Europe

1950s and 60s: Mothers were blamed for children’s autism

1970s: public schools required to provide education for autistic children

1980s: “autism” added to DSM; Rainman changes everything

1980s & 90s: Asperger’s work translated into English; “Asperger’s” put into DSM.

Our characteristics have a name: Asperger’s!

2000s: GRASP and Wrong Planet. Conflicts between “curing” and “celebrating.”

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2013: “Aspergers” removed from DSM

Our characteristics have a new name: High Functioning Autism!

So how were we and our peers impacted by these events in our youth? Where can we find these answers? Let’s ask our peers! Our study is born!

PART II: OUR FINDINGS

• Pros and cons of our survey • Who responded? • What were they like as kids? • Adult life: relationships and work • Why diagnose? • Good news after 50! • Where to learn more and get help

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SURVEY OF OLDER AUTISTIC ADULTS

• Designed by Wilma Wake, Rob Lagos, & Philip Wylie • 124 questions • 145+ completed surveys worldwide

• Explores The Nine Degrees of Autism (Wylie, et al., 2016) • Distributed in person and online • To be published as a book by AAPC

SURVEY LIMITATIONS

• Self-selected respondents • More educated/articulate • Relies on self-report • No standardized diagnosis

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WHO ARE OUR SURVEY TAKERS?

• 48% U.S., 46% U.K., 6% other countries • From at least 26 different American states • 76% diagnosed with autism by a professional; 17% self-diagnosed

Age Range

0.7

4.8 50‐59

35.9 60‐69 58.6 70‐79 80‐89

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Gender

Male 43.4 56.6 Female

Sexual Orientation Heterosexual Not sure Gay Asexual Other Bisexual Lesbian Prefer not to answer Transgendered

Percent Count Heterosexual 77.9% 113 Gay 3.4% 5 Lesbian 1.4% 2 Bisexual 2.1% 3 Transgendered 0.7% 1 Asexual 3.4% 5 Not sure 6.2% 9 Prefer not to answer 1.4% 2 Other 3.4% 5 Total 145

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GENDER DIFFERENCES FOUND

• More males than females are heterosexual (85% vs. 68%) • Other researchers report this as well (Hendrickx, 2015) • More women than men reported PTSD (41% vs. 21%) • Consistent with research on the general population (Tolin & Foa, 2006) • More females than males reported self (non-professional) identification of autism (24% vs. 10%)

Religious Preference

A Christian Tradition

4.8 3.4 9 Atheist/agnostic 34.5 General sprituality 14.5 Other

A Jewish Tradition 33.8 An Eastern Tradition

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CHILDHOOD EXPERIENCES

• 94% attended a mainstream school. • Over 90% received no special services. • 56% were “bored a lot in classes.” • Most performed above average in science, reading, and language • Most performed at least average in math. • Most performed below average in team activities and social interactions.

Did you feel different from other children and teens?

5.6

Yes

94.4

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ADULT RELATIONSHIPS

• 43% currently married • 26% widowed/divorced • 26%: “I’ve never really been close to anyone.” • Common challenges: • Difficulty with communication • Being misunderstood • Finding it hard to understand others • Needing a lot of time alone

EMPLOYMENT

70 My autism has made employment difficult 56.6 60 I am retired 50

40 My autism has helped me in my work life 29.0 30 24.1 23.4 I am currently employed full time

20 14.5 11.7 11.0 10 I am self‐employed

0 I am currently employed part time

I am looking for work

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EMPLOYMENT

• 36% of our respondents have graduate degrees • Autism can be a help or a hindrance at work • Some companies recruit autistic employees: • CVS • Walgreens • Home Depot • Kohl’s

WHY DIAGNOSE IN OLDER ADULTS?

After being diagnosed: • 77% felt relief • 66% felt better about themselves • 100% of those interviewed felt their life was improved

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DATA FROM OUR STUDY

• 88% knew they were on the spectrum after age 50 • 60% suspected their autism between ages 30-50 • Almost all were diagnosed after age 40

In the year after diagnosis/realization, how did your life change?

I felt better about myself

80 I was more withdrawn

70 64.1 My life did not change 60

50 I became depressed

40 I felt worse about 30 myself 22.1 21.4 21.4 19.3 20 I was more outgoing 13.8

10 6.2 5.5 I developed mental 0 health problems I developed health issues

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When you were diagnosed [or realized you were on the spectrum], which of the following did you feel?

90 77.2 80 70 60 Relief 50 40.7 Other 40 28.3 30 Excitement 20 12.4 11.7 10.3 Disbelief 5.5 10 Fear 0 Disappointment Rage

DIAGNOSTIC CONSIDERATIONS

• Involve friends/relatives in diagnostic process when possible. • Older adults may have few living relatives from childhood. • Know that presentation may change over time, depending on age and stage. • Learn about local and online resources.

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CO-OCCURRING CONDITIONS IN AUTISM

Rates of other conditions in autistic groups: • ADHD - 31% • Seizures - 10-40% • OCD - 37% • Phobias - 44% • Depression - 10-30%

COMORBIDITY FROM OUR STUDY 81% report one or more mental disorders: • Depression • Anxiety • OCD • PTSD • Personality disorders • Bipolar disorder • Dissociative disorders • ADHD • and others

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IMPROVEMENT AFTER AGE 50

• 73% were depressed before age 50  58% • 16% had suicide attempts before age 50  4% • 37% took psychotropic medication  26% • After age 50, respondents were more likely to: • be active in the autism community • celebrate their differences • accept themselves • try to help others • have autistic friends.

Do you feel have a reached a point in your life where you are comfortable with being on the spectrum and consider it a positive part of your life?

31.7 Yes No 68.3

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RESOURCES

• Asperger/Autism Network (AANE) • Social & support groups • Coaching • Conferences • Couples services • Artist collaborative • Websites, blogs, Facebook groups, books

ADULT SOCIAL AND SUPPORT GROUPS AANE – BOSTON AREA • 50 and Over Support Group • Employment Support Group • Women’s Support Group • Young Women’s Support Group • Gender Identity and AS Support Group • New to AS Support Group • Gay Men’s Support Group • Spouse/Partner Support Group • Mental Health Providers on the Spectrum • Mindfulness Meditation Group

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AANE ARTIST COLLABORATIVE

• Our Gallery Artwork is on display in a permanent gallery at the AANE office in Watertown, MA. For more information, email [email protected] or call 617-393-3824 x44. • Our Website Visit aaneartists.org for more sample artwork, upcoming exhibits, and more.

AANE ARTIST COLLABORATIVE

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SUPPORT GROUPS AANE - MAINE

• Women’s Group, first Wednesday of the month, 6-8pm • Asperger Support Group, first Saturday of the month, First session 1-2:30pm Break 2:30-3pm Second session 3-4:30pm

KEY POINTS

• Autistic women may be underdiagnosed • Childhood was hard – no understanding or services • Work can be a challenge, but some companies see the benefits of autism • Life gets better after diagnosis • Great supports are available

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PART III: SUPPORT AND EXPERIENCES ON THE AUTISM SPECTRUM

Rob Lagos Maine Support Group Facilitator

ABOUT OUR SUPPORT GROUP

The group we facilitate: Southern Maine Adults with Asperger’s Group

This is a support group for adults over 18 years old for all ages with Asperger’s, meeting about once/month in Portland, Maine. It was founded by three mothers of young adults with Asperger’s Syndrome around 2005.

I came to the group in 2007. I became facilitator about six months later, when the facilitator decided to step down. It is now entirely managed by people on the spectrum.

Close to half of the regular attendees are over 50.

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GOALS OF OUR SUPPORT GROUP

. Provide empathy and support, as well as a social outlet where it is difficult to find on the outside . Take a different angle on and approach to social interaction . Focus on development of special skills . Provide mid-month activities for members and their families

ISSUES MOST DISCUSSED

. Hyper-anxiety including social anxiety . Sensory overload: sound, light, smell, touch . Cannot understand intentions of those on the outside . Intentions misunderstood by those on the outside

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ISSUES MOST DISCUSSED (CONTINUED)

. Difficulty Fitting In . Awkwardness; eye-contact . The “unwritten rules” dilemma . Inability to pick up social cues . Most aspies do not small-talk . Socializing takes up a lot of energy

ISSUES MOST DISCUSSED (CONTINUED) .Need for sameness .Difficulty finding and maintaining relationships .On-line matching most frequently used .High divorce rate for those who have relationships .Partners often seek support counseling .Sensory distortion .CBT (Cognitive Behavioral Therapy) is good for this; but will not address other issues

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ISSUES MOST DISCUSSED (CONTINUED)

. Interests/Occupational . Interest and skills: A wide range: IT (Computer) is very popular! Also Art, Mechanics, History, Math, Science, Trivia . Focus and persistence . Underemployment: people with a great knowledge base underemployed . Issues of both finding and keeping a job . Many in group very smart but on disability and/or not living independently

ISSUES MOST DISCUSSED (CONTINUED)

. Not enough professional knowledge . Misdiagnosis: comorbidities often diagnosed first or instead . Older people on the spectrum undiagnosed . Often misunderstood, just like on the outside . Communication divide between client and therapist . Some people in the group feel helped by their therapist; others feel frustration . Still not enough support elsewhere

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COMPLIMENTS RECEIVED!

• Compliments received from group members • Thank you! • I feel like I can be myself and without being judged • I feel like I have found my own ‘tribe’ • For the first time I have a social life • Reaction to being diagnosed: • This all makes sense now.

INHIBITING FACTORS IN GROUP SUPPORT

. Many who are on the spectrum are hesitant to come to a group. . Many do not like groups or are too afraid to try it. . Many find large groups intimidating. . Sensitivity issues . Many on the spectrum do not want to share what bothers them. . Many who are very depressed keep it to themselves . Sharing things is often traumatizing. . Women tend to share more than men.

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INHIBITING FACTORS IN GROUP SUPPORT (CONTINUED)

. Many have more severe communication barriers . Many cannot speak for themselves. . This may affect more severely impaired persons with autism, high or lower functioning. . Men diagnosed with ASD still greatly outnumber women . About 75-80% men to 20-25% women. This can affect group attendance for women. . Women tend to have different issues. . We have a women’s support group meeting monthly in Portland.

ELDERLY AND OTHER-CULTURE POPULATIONS

. Baby-boomer and earlier: “The lost generation” . Autism less known during growing up years . Diagnosis for many came late in life . Many still undiagnosed due to life-long adaptation in coping . Higher comorbidity due to traumatic past requires more support . Literature and awareness is still scarce; but we are doing a study! . Autism and Asperger’s still not well recognized in many cultures.

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EXPERIENCES OF WHO I INTERVIEWED IN OVER-50 SURVEY

. Socialized with people either younger or older . Depressed . Isolated in past and present . Often blamed AS WELL AS praised for things not their fault or unintentional or beyond their control; and: . Unable to understand why people pleased or displeased . Diagnosis was liberating from blame . But also confining

MY OWN EXPERIENCES

. I knew I was different / alone in struggle . Intellectual vs. social/emotional development . Bullying: school and family . Could not meet expectations . The diagnosis: mother first identified . Finding peer group; leading

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COMMON THEMES AND FINDINGS

Age of realization, diagnosis of autism, involvement, and acceptance correlated well with age of respondent, within survey group Life in general got better after diagnosis Early intervention may be key Reported co-morbidities such as PTSD seems much more prevalent than in general population Need for more attention on the elderly population For all ages, a cultural and communication divide is apparent

WHAT SUPPORT IS OUT THERE IN MAINE AND NEW ENGLAND?

. AANE (Asperger/Autism Network): http://www.aane.org is a great resource!

. It is based in the Boston area, and so, focuses on that area, but it also provides other Massachusetts and non- Massachusetts resource information.

. At AANE, there a lot of support groups including specialized groups such as women’s, transgender, gay, over 50, spouse.

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OTHER SUPPORT (CONTINUED)

. Autism Society of Maine, http://www.asmonline.org is a great resource for Maine! . Other Asperger support groups in Maine: . Women’s group: meets every first Wednesday of the month in Portland . Spouses of persons with Asperger’s: meets in Westbrook . Support in general is still scarce and hard to find for many.

OTHER SUPPORT (CONTINUED)

. On-line support: Good for many who are geographically isolated or are inhibited toward group support. . Wrong Planet: http://wrongplanet.net . GRASP (Global and Regional Asperger Syndrome Partnership): based in New York: https://grasp.org/ . We are talking about setting up an international conference line for autism spectrum group support . Other on-line resources . 2-1-1: information and referral

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QUESTIONS