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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 1 3/28/2017 DR. LEO KANNER 1894 – 1981 1943: “Autistic Disturbances Of Affective Contact” 1944: “Early Infantile Autism” Donald Triplett Born: 1933 Diagnosed: 1943 2 3/28/2017 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” 3 3/28/2017 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 4 3/28/2017 EMPOWERED MOTHERS/FATHERS RUTH SULLIVAN & SON JOE Ruth Sulllivan and son Joe From Irish America Aug/Sept. 2016 by Tom Deignan 5 3/28/2017 BERNARD RIMLAND, PH.D. EUSTACE CUTLER AND DAUGHTER TEMPLE GRANDIN 6 3/28/2017 LORNA WING TEMPLE GRANDIN 1986: Her book Emergence is published Recognition of what an autistic person can accomplish 7 3/28/2017 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 8 3/28/2017 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 2006 9 3/28/2017 • 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.” 10 3/28/2017 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 11 3/28/2017 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 12 3/28/2017 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 13 3/28/2017 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 14 3/28/2017 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 15 3/28/2017 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 No 94.4 16 3/28/2017 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 17 3/28/2017 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 18 3/28/2017 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 19 3/28/2017 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. 20 3/28/2017 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 21 3/28/2017 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 22 3/28/2017 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 23 3/28/2017 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 24 3/28/2017 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 25 3/28/2017 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.
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