(This blog is part of a 3-article intern series by Communications Intern Seth Acero)
One night, while I was cruising around the waves of social media, I stumbled across a meme from a man who was an advocate for the Autistic community. The meme was a criticism of how older adults have viewed autism, with the tagline saying, “Back in my day, all this ‘autism’ didn’t exist.” The meme then proceeded to show a picture of what appeared to be a grandmother’s fridge covered in hundreds of strawberry magnets, trying to make the point that there were most definitely a lot of undiagnosed adults from generations past.
While I found the meme to be a little funny but generalising and stereotypical, it wasn’t until I checked the comments that I realised many people found the joke to be truer than anything. I found comments of people who talked about people they knew in their communities that exhibited clear signs of autism but were only described as “simple,” “odd,” or “quite nice.” Some people even told stories of their parents and the traits of repetitive cognition and obsession they exhibited, even if they weren’t formally diagnosed.
These stories made me quite curious. I had known that some people weren’t formally diagnosed when they were children about 50–60 years ago, but was it seriously that common for adults to go undiagnosed? Within seconds, I pulled up research articles and stories regarding this case. This blog is about these findings and what they could possibly mean.
Autism diagnosis trends
It is no secret that autism diagnosis rates have significantly increased over time. Through research, the criteria of autism diagnosis changed significantly over time. The original description of autism in 1943 considered the condition a rare form of “childhood schizophrenia,” labelling it as a psychiatric condition that some (specifically, Bruno Bettleheim) believed was caused by “refrigerator mothers” and hypothesised that children on the spectrum were the product of a “lack of maternal warmth”, a theory now proven to be entirely false.
Since those early theories, however, the autism criteria has changed multiple times to fully encompass the spectrum the condition truly is, thus ridding the term “psychiatric condition” from all diagnoses. As doctors become more knowledgeable about identifying autism without intellectual disability, more individuals can understand autism and receive the services they need to thrive in society. According to a 2021 report from the American Centre for Disease Control (CDC), one in 54 children aged eight were diagnosed with autism in 2016, compared to one in 150 in 2000. This represents a nearly tripled rate in just 16 years.
That last sentence has a key word that many probably glossed over: children. When reviewing most autism diagnosis data, early childhood and adolescence dominate the statistics. The average age of diagnosis in the past five years is 5–6 years old, showing that parents have become better at recognising when to contact specialists for assessments, and doctors are starting to understand the early signs outlined by organisations like the American CDC and the UK’s National Health Service. In a study conducted for the US National Institute of Health (NIH), researchers found 34,873 relevant articles focusing on early childhood autism research, with more than 70% of the data published after 2012. This data represents However, one community has not received as much attention as children: older adults.
Autism rates in older generations
Older generations, specifically those born before 1980, have largely been left out of most of the progress in diagnosis visibility. In the same NIH study that found nearly 35,000 articles on autism in children, researchers found only 147 articles on autism in older adults. Of these, 38 were conducted pre-2012, showing that while significant progress has been made since 2012, research attention is still needed.
A 2011 report from the United Kingdom further illustrates this point. A population survey showed an autism prevalence of 1% in adults, which, when compared to the global statistic of nearly one in 40 people showing signs of autism, highlights a significant discrepancy. The common saying, “autism just didn’t exist in their days,” ignores the reality that autism has always existed, whether or not it was recognised. The UK statistic suggests that millions of adults over 50 could be undiagnosed and haven’t received the assistance needed. They have become, to many within the autism community, the “lost generation.”
This issue isn’t something that just occurred over the last decade or so; it is a trend that stems from a historical understanding of what autism is – and how it should be dealt with from a societal perspective.
Historical context and social stigma
As stated before, autism has always existed, but the visibility and understanding we enjoy today hasn’t. What we now define as autism has been given many different names over time and often was misunderstood or mistaken for a different condition. In past generations, undiagnosed individuals weren’t seen as “autistic” but rather just “odd” or “quirky.” People didn’t understand what autism was or how to identify it, but they knew that those who could be considered Autistic today had some sort of difference – they just didn’t know what to say or do.
I have had this experience before back home in the States. In the shopping area near where I grew up, there was a place called “Bill Miller’s Barbecue,” I’d go there a lot and started to notice that there was an older gentleman who was there nearly every time I was. It wasn’t just a coincidence either. I knew he was there on a routine.
One day, while I was eating my fried chicken, I saw the man sit in his usual spot, but this time he appeared distressed. He was breathing rapidly, his hands were shaking, and he was tapping his food anxiously. The man looked like he needed help, so I left my table and walked up to the cashier to ask for assistance from the older gentleman behind the counter.
“Hey sir, that guy over there doesn’t look too good. Is it possible we might need to call someone?”
“Oh, he’s okay. That’s Paul*. He’s one of our regulars.”
I turned to the man whose face was now red and looked as if he was about to start sobbing.
“Are you sure? I might be wrong, but that man looks completely distressed.”
The man behind the counter explained what was going on to me. “Yes, he is distressed, but that’s because we ran out of apple pie. We have dealt with this before. Paul comes in here every Tuesday at 1:35 exactly and orders the exact same thing: brisket po’ boy with fries, a large sweet tea, and a slice of apple pie. He then goes to sit in that same spot where he is now, eats the fries first, then the sandwich, then the apple pie, then the sweet tea. He throws away his trash then proceeds to leave at exactly 2:15. He always eats alone, and when we have asked him, he has told us he prefers it that way. It has been this way for the last two years I’ve been working here, but he’ll be okay. We have a slice coming out of the oven for him right now.”
While I had an elementary understanding, I knew that the man holding back tears in the corner was probably on the spectrum. “I see. Is he Autistic by any chance?”
The man looked confused. “Autistic? Nah. Maybe OCD, but Paul doesn’t strike me as someone who would be Autistic. That’s just how Paul is. A little odd but a cool guy who doesn’t bring trouble to anyone when he’s here. Besides, that’s something you get diagnosed with when you’re younger.”
I think about that occurrence now and then, and while I was thinking about what I wanted to say in this post, I thought of Paul. He had demonstrated Autistic traits, yet when someone explained his scheduled meal at Bill Miller’s, not a single person even considered it. Even the younger people behind the counter preparing the food seemed to agree with the man who explained who Paul was. The consensus was clear: there was no way Paul, the older gentleman who clearly exhibited signs of autism, was Autistic; he was just quirky.
One of the reasons I believe that nobody in the restaurant considered Paul to be Autistic was his age. As I mentioned before, more research has been done on early childhood signs than signs in older adults. It is likely that the stigma Paul faced in his childhood persisted into his older years, with little progress in understanding how the condition affects his age group. Paul’s traits could also have been confused with those of an elderly person, which studies show is common when considering autism in the elderly. It is also possible that they didn’t think someone as nice as Paul could have a condition that the public had perceived as “awful” for decades. All of this, mixed with what appeared to be complacency with Paul’s anxiety about his routine, led to the conversation turning out the way it did.
As I write about it now and reflect on my research, it becomes more obvious that what happened to Paul that day has probably happened to thousands, if not millions, of older adults worldwide.
The story and misunderstanding I have talked about only encompass the low-to-middle support needs community; the story of high support-needs Autistic individuals is an entirely different story.
High support needs Autistic individuals
Another reason for the low diagnosis rates and misunderstanding of autism in older generations could be the institutionalisation of many high support-needs individuals in the past. Until the 1980s, most individuals with high support-needs were often misdiagnosed with conditions like schizophrenia, OCD, or psychosis and placed in institutions or heavily medicated. These treatments rarely addressed their actual needs, leading to further trauma and misunderstanding.
For instance, a 55-year-old man reported being on 18 medications before his autism diagnosis at age 53. The fear of institutionalisation and heavy medication has likely deterred many older adults from seeking a diagnosis.
What can we do?
Despite the challenges, there are ways to support older Australians who may have lived without a diagnosis. By providing resources, reducing stigma, and encouraging late diagnoses, we can improve their quality of life.
Reducing stigma
Reducing stigma and changing societal perceptions are crucial for fostering an inclusive environment. Public awareness campaigns can challenge outdated views of autism, highlighting the experiences of older adults within the Autistic community. Organisations like Aspect play a critical role by showcasing stories of older adults with autism, promoting a more inclusive and respectful attitude.
Inclusive environments in workplaces, healthcare facilities, and community centres are essential. Training programs for staff can improve their ability to include and support older Autistic adults. Policies promoting accessibility and inclusivity aim to ensure that older adults have equal opportunities. Healthcare providers should also be trained to recognise autism in older adults.
Families and carers play a vital role in this support network, providing supports. Education and training for family members can enhance their ability to offer effective support, reducing stress and improving family dynamics.
It is never too late to seek understanding and embrace diversity. Together, we can build a future that is supportive, inclusive, and respectful of all ages within the Autistic community.
Sources
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8114403/
https://systems.aucd.org/docs/EHines%20Rates%20of%20ASD%20Diagnosis%20by%20Gender%20and%20Age.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9645679/
https://www.thetransmitter.org/spectrum/the-missing-generation/
About the Author
Seth Acero is a Marketing and Communications Intern at Aspect. He is an English Major and Mathematics Minor at Wabash College in Indiana, USA. As a scholar, Seth admires Romantic and Victorian poetry for its admiration of natural beauty and escape from modern life, which can often be overbearing. He believes writing is best at its rawest, purest, more spontaneous form, much like the poets of the Romantic era in England. He is currently reading Henry David Thoreau’s “Walden,” which emphasises the importance of self-sufficiency and reconnecting to our natural world.
