A Lost Generation: Growing Up with Autism Before the "Epidemic"
Jennifer Scriven was that kid, growing up. The butt of jokes, the girl who was tripped in the hallway, bullied on the playground, and, on a good day, merely shunned. When she complained, teachers suggested she was partly to blame. She didn't talk, act, or dress the way other kids did. "The message was, 'You're not conforming, so what do you expect?'" she recalled.
That was Kansas in the 1970s and 1980s, but it could have been anywhere. What no one knew, or could have known, was that Jennifer was different by design, not choice. The thing that made her different would not appear in a diagnostic manual until she was 26, and it would not be formally applied to her until age 48: Asperger's syndrome, or "autism spectrum disorder without cognitive impairment," as it's now called.
When she was born in 1968, autism was a diagnosis reserved for children with severe developmental delays.1 Experts believed autism affected only four or five out of every 10,000 children.2
Ms. Scriven was already an adult when American psychiatrists began expanding the borders of the diagnosis, moving first into the uncharted territory of atypical autism (Pervasive Developmental Disorder-Not Otherwise Specified), and later, in 1994, into the milder Asperger's syndrome.3 As the definition expanded, so did the number of people diagnosed with it. Now one in 68 children has autism spectrum disorder, or ASD.
The Interactive Autism Network (IAN) interviewed almost a dozen people born in the 1950s to mid-1980s, about what it was like to grow up with autism in the time before. Before the "epidemic" of childhood diagnoses that began in the 1990s. Before pediatricians began specifically screening for it. Before people knew what it was.
A legacy of bullying and blaming the victim
If conformity was king in the classroom of the mid-20th century, then students on the spectrum faced particular challenges. Their autism unrecognized, they were sometimes regarded as willfully nonconformist, disruptive, or emotionally unstable. Some managed to earn stellar grades, while others muddled along academically, sometimes in special education classes, sometimes not. "…These are the lost generation: those who today would receive their diagnosis by 6 or 8 years old, if they were a 21st century child," according to British researchers.4
Many told stories of being teased and assaulted as children and teens. Kiran Puri, now 49, vividly recalls her elementary school years in Missouri, where classmates exploited her trusting nature and desire to "fit in." In the lunchroom, one girl demanded that she put half an orange in her mouth, then taunted her when she did it. Later on, a fifth grader insisted she imitate "what you do when you go to the bathroom," said Ms. Puri, who was diagnosed with Asperger's at 43. "I would get bullied because I was gullible and too eager to please," she said.
Paige Hulsey, 37, did not know why she was bullied throughout childhood. "I was perpetually bullied and mystified as to why," recalled Hulsey, who was diagnosed in 2014. "I had braces, but it wasn't about having braces. I was chubby, but it was not because I was chubby." Like Ms. Scriven, she believes teachers and others blamed her for provoking the bullies. "Their common reaction was, 'You have to stop being so weird. If you weren't so weird, everything would be fine.'"
In elementary school, her advanced vocabulary and social differences – symptoms of Asperger's – got teachers' attention. They viewed these as signs of giftedness, not autism, she said. She ended up in programs for gifted students, but did not excel there. The sensory environment at school interfered with her learning. But whether in California, where she was born, or 5,500 miles away in Great Britain, where she attended high school, mistreatment and misunderstanding followed her. The bullying ranged from being ignored to outright physical assault, she said. She doesn't recall anyone trying to help her. "I was lumped in with the perpetrators as being the source of the problem," said Hulsey, who completed a bachelor's degree in public health in 2017.
Symptoms Noticed, Diagnosis Missed
Like Hulsey, Rebecca Evanko was identified as intellectually gifted in elementary school. She excelled in writing competitions in her native Australia. "At around the age of 9 or 10, there was a sudden shift and school became intolerable, much of it due to bullying and my growing awareness that I was a complete social misfit, especially around the rather vicious cliques of pre-teen and teen girls. At around age 11, school tests apparently revealed me to be 'retarded.' I dropped out of school in the third month of Grade 9 at age 15," she said in an email. Like several of those interviewed, she preferred an email conversation over a phone call with a stranger.
As a child, Rebecca's mother took her to mental health providers for help. She struggled to make eye contact, speak in social settings, and control meltdowns. "My outbursts, or tantrums, were demarcation points over much of my childhood," she recalled. Around age 11, she spent one birthday party hiding under a dining room table at the host's house, overwhelmed by the noise and social expectations. Her symptoms were noticed, but not recognized as autism. "They did not fully know about autism in the 1970s and 1980s, especially in relation to the way it manifests in girls," she said. She would not be formally diagnosed until 2012, the year she turned 45. By that time, she had returned to school, earning a high school equivalency, a college degree, and ultimately a doctorate in cognitive linguistics.
Autism spectrum disorder, without cognitive impairment, was considered to be quite rare in girls and women, even more rare than severe autism in their sex.5 But in recent years, researchers have been wondering if females with autism, especially those without intellectual disability, are hiding in plain sight, more likely to be overlooked than males because of different symptoms or coping skills.6-8
Having a Childhood Diagnosis of ASD
Would having a childhood diagnosis – and the attention of special education teachers – have prevented bullying for this generation?
David M. Leon, 34, of New Jersey, was diagnosed at age 3 with autism, and received early intervention at the ground-breaking Douglass Developmental Disabilities Center. When he started school, his teachers knew he had autism. Unfortunately, that did not prevent bullying.
"I did have some friends back in private elementary school, but back in public high school, I was shunned, beat up, mistreated, bullied and was alone for most of the time, as I had to handle it on my own with the support of my family," he wrote in an email. Fortunately, some teachers would check in with him. Also, his musical talent and work in concert choir earned him praise and attention from the director.
But his classmates were a different story. "The good old mainstream didn't bother with me just because they thought they were cool," Mr. Leon said. Even now, with public awareness of autism at an all-time high, bullying remains a particular problem for students on the spectrum. According to IAN research conducted in 2012, children with ASD are bullied at a much higher rate than their unaffected brothers and sisters.9 Also, students with the greatest amount of time in general education ("mainstream") classes were more likely to be bullied than those in special education classrooms or schools.10
Self-Discovery for those Diagnosed Late
A lot of high-functioning autistics, especially women, enjoy self-discovery at any age. It's a joy for us to know why we do some things, like stimming.
It wasn't just adults who seemed to blame children with undiagnosed autism for their social problems. Those children sometimes blamed themselves. In an article for IAN, psychologist Simon Baron-Cohen and colleagues noted that "low self-esteem" was the legacy of such bullying and social exclusion for some.
Jennifer Scriven said she grew up believing her social difficulties were "a character flaw." That changed when her son was diagnosed with ASD, and she began learning about it. She found her own diagnosis to be liberating. "A lot of high-functioning autistics, especially women, enjoy self-discovery at any age. It's a joy for us to know why we do some things, like stimming. It's very empowering," said Ms. Scriven, who has a graduate degree in cultural anthropology. She currently transcribes recordings for a living, a job that plays to her superior hearing and perfectionism, traits that she identifies with her ASD.
Finding a diagnosis in adulthood can be difficult because many of the clinics that specialize in autism only see children and teens. For some older adults, recognizing that they have autistic traits can be just as valuable as having a medical diagnosis.
That was the case for Lauren, 65, an artist in Oregon who does not have a diagnosis. When her son was diagnosed with Asperger's in 2006, she bought a book about it and recognized her "childhood self" in its pages. She soon realized why she would rehearse conversations, imitate others in social situations, and follow rigid rules of her own creation. "It was a great relief to know I wasn't an alien but rather one of many with these differences," she said by email.
Recently another baby boomer, Garret Mathews, 67, penned a "coming out" blog entitled, In 2016 I learned that I have Asperger's. "When I finally found out why I’ve always been different, it was like unbuttoning a cement overcoat. Now I understand why I think this, why I avoid that," said the retired newspaperman.11
A diagnosis can be bittersweet, bringing both relief as well as recognition of missed opportunities. Some members of the "Lost Generation" wondered if their lives would have been easier if they had been offered school services, social skills training, job programs geared to autism – or just plain understanding – when they were younger.
Several, including Ms. Puri, said they face problems today, particularly with vocational rehabilitation and employment programs that do not seem geared to their generation of people with autism and Asperger's.
"There hasn't been enough emphasis on the generation I'm from," explained the Missourian, who is trying to find a job that fits her skills. "We're the prime example of what happens when a person doesn't get the right help, the right diagnosis, the right understanding."
The Interactive Autism Network (IAN) wishes to thank the participants in IAN Research who agreed to be interviewed for this article. The stories of parents of middle-aged adults with ASD appears in a companion article, Raising Children with Autism, Before the "Epidemic"
- A companion article, from a parent perspective: Raising Children with Autism, Before the "Epidemic"
- IAN blog with resources for getting evaluated for autism in adulthood: Better Late than Never, Perhaps: Getting a Late ASD Diagnosis
- Very Late Diagnosis of Asperger Syndrome by Simon Baron-Cohen, Janine Robinson, Marc Woodbury-Smith and Sally Wheelwright
- IAN article about autism in girls and women: Are Girls with Autism Hiding in Plain Sight?
- IAN's directory of articles about Adults with Autism, including health care, jobs, services, and relationships.
- The IAN Adult with ASD Questionnaire: Striving to Better Serve the Growing Adult ASD Community
Photo credits: Jennifer Scriven, Rebecca Evanko, David Leon, Lauren (last name withheld per her request).
- Shapiro, B., & Accardo, P. (2014). Preface. Autism frontiers: Clinical issues and innovations (pp. xi-xiii). Newburyport: Brookes Publishing.
- Christensen, D. L., Baio, J., Van Naarden Braun, K., Bilder, D., Charles, J., Constantino, J. N., . . . Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years — autism and developmental disabilities monitoring network, 11 sites, united states, 2012. MMWR Surveill Summ, 65(No. SS-3), 1-23. doi:http://dx.doi.org/10.15585/mmwr.ss6503a1
- Donvan, J., & Zucker, C. (2016). In a different key: The story of autism (1st ed.). New York: Crown Publishers.
- Baron-Cohen, S., Robinson, J., Woodbury-Smith, M. & Wheelwright, S. (2007). Very late diagnosis of asperger syndrome. Retrieved from https://iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome
- Fombonne, E. (2009). Epidemiology of pervasive developmental disorders. Pediatric Research, 65(6), 591-598. doi:10.1203/PDR.0b013e31819e7203[doi]
- Hiller, R. M., Young, R. L., & Weber, N. (2014). Sex differences in autism spectrum disorder based on DSM-5 criteria: Evidence from clinician and teacher reporting. Journal of Abnormal Child Psychology, 42(8), 1381-1393. doi:10.1007/s10802-014-9881-x [doi]
- Hiller, R. M., Young, R. L., & Weber, N. (2016). Sex differences in pre-diagnosis concerns for children later diagnosed with autism spectrum disorder. Autism : The International Journal of Research and Practice, 20(1), 75-84. doi:10.1177/1362361314568899 [doi]
- Mandy, W., Chilvers, R., Chowdhury, U., Salter, G., Seigal, A., & Skuse, D. (2012). Sex differences in autism spectrum disorder: Evidence from a large sample of children and adolescents. Journal of Autism and Developmental Disorders, 42(7), 1304-1313. doi:10.1007/s10803-011-1356-0 [doi]
- Zablotsky, B., Bradshaw, C. P., Anderson, C. M., & Law, P. (2014a). Risk factors for bullying among children with autism spectrum disorders. Autism : The International Journal of Research and Practice, 18(4), 419-427. doi:10.1177/1362361313477920 [doi]
- Zablotsky, B., Bradshaw, C. P., Anderson, C. M., & Law, P. (2014b). Risk factors for bullying among children with autism spectrum disorders. Autism : The International Journal of Research and Practice, 18(4), 419-427. doi:10.1177/1362361313477920 [doi]
- Mathews, G. (2017). An aspie come out of the closet: In 2016 I learned that I have asperger's. Retrieved from https://medium.com/an-aspie-comes-out-of-the-closet/i-learned-in-2016-that-i-have-aspergers-ec86aad6c440