Owen sat in the school psychologist office, the remnants of a torrent of tears still on his face from his recent meltdown. Ms Field held up two corks, tucked them in between her thumbs and forefingers and said, “Owen, watch this.” She then turned her hands to the sides and switched the corks to the opposite hands in one efficient motion.
Owen’s eyes were wide and of course he wanted to try it. It didn’t work. Before he became too frustrated, Ms Field explained to him that the trick could not be done on the first try by anyone; it required knowledge and practice because the way our brains work prevents us from doing it on our own immediately.
In order to do the trick, he had to learn from someone with experience and skill to teach him, then he had to practice until he was good at it. Then he could show off his skill to others and pay it forward.
This all happened just a few days after Owen was diagnosed with severe ADHD and autism spectrum disorder. Like Ms Field, the doctor who diagnosed him was relying on, not just her knowledge and skill, but other’s from years and years ago.
Today, I want to look into autism evolution, and see what information and enlightenment we can glean from history. How did autism even become a thing?
How long has autism spectrum disorder been affecting human evolution, and how has it shaped our world today? Let’s find out!
History of the autism spectrum
We know how far autism research has come just in the last few years. Even the way autism spectrum disorder has been defined is different now than it was 10 years ago. I can only imagine how different it is now from when human beings first realized autistic traits existed and began documenting and studying it.
Earliest known autism cases
Obviously autism as we know it today existed long before it was identified or documented, but several things came into play to bring us from the “dark ages” forward till today. The study of autism spectrum disorder as well as the experiences of friends and family of autistic people, followed by the experiences of autistic people themselves have all been instrumental.
How autism research got it wrong in the beginning
In a paper titled, Evolution in the Understanding of Autism Spectrum Disorder: Historical Perspective, it is written: “The study of the evolution in the diagnosis and treatment of autism is a lesson in the dangers of medical beliefs or doctrines that are not grounded in medical science. The early descriptions of autism suggested that it was the result of childhood psychoses or psychodynamic disturbances of parent-child relationships. This flawed conceptualization of autism spectrum disorders (ASD) gave way to advances in medical science, which have established ASD as a neurobiological disorder of early brain development.
“Although medicine is in part an art, science is the fundamental foundation of good clinical practice. Science relies upon the systematic accumulation and interpretation of knowledge and facts that are obtained through objective observations and experiments. Although there are many historical examples where medical assumptions, premises, or dogma were later proven to be unfounded or incorrect, the beauty of medicine is its ability to change and alter doctrines as new evidence comes to light. Autism is a classic example of such an evolutionary process.”
In a study called, How Autism Became Autism, we learn: “The concept of autism was coined in 1911 by the German psychiatrist Eugen Bleuler to describe a symptom of the most severe cases of schizophrenia, a concept he had also created.”
This breakthrough was amazing and began a new era in discovery. However, there was so much at that time that science did not know, and Eugen Bleuler got some of it wrong. Unfortunately, this led to confusion that made some people with autism severely misunderstood, and without provisions.
A blessing and a curse
The first person officially diagnosed with autism was a man by the name of Donald Triplett. He was diagnosed in 1933. My question was, why did it take so long to get from discovery of autism and the first diagnosis?
Here is the thing, science and evidence takes time to develop theories into accurate information. This means years of building upon what came before.
As a spectrum disorder, the evolution of autism has relied heavily on finding common variants in a set of conditions, good and bad, that are not consistent in all affected individuals. It went from completely undetected, to being thought of as schizophrenia, other psychiatric conditions, and neurodevelopmental disorders, to what it is today.
As with all spectrum conditions, there are various degrees of autism spectrum disorders. Part of the complications of figuring it all out meant that family members of individuals diagnosed were some of the first to realize that there was more to it, and pushed for more accurate diagnosis.
In the aforementioned study we see, “Another reason why diagnoses of autism have risen in Britain and elsewhere is because the closure of institutions for ‘mentally retarded’ children led parents to campaign for better diagnosis and recognition of their children’s problems. Pressure groups such as the UK Society for Autistic Children (est. London 1962) worked hard to ensure that new treatment methods were developed to enable their children to adjust to the new social roles that they were being forced to adopt. This led to a growth in new behavioral treatment methods as well as a massive backlash against psychoanalytic styles of reasoning.”
The early misdiagnosis was a catalyst for change.
Just as the changes to the DSM-5 showed a more accurate view of autism as a spectrum disorder, and with it previous diagnosis of asperger syndrome changed with it.
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How did people with autism spectrum disorder change the world throughout history?
Some of the most influential, most intelligent, world changers throughout history have been identified as being autistic. Without their autistic traits, they would not have been in a position to think the way they did/do, and the world would never know some of the most amazing inventions, art, advances in science, and more. Not to mention the everyday impacts someone with autism brings to their relationships.
Albert Einstein is just one example. His contributions to the world are still marveled at and enjoyed today. As we learn more and more about autism spectrum disorders we understand how autism predates its scientific discovery by a long shot.
On the same token, when culture, standards of living, common comorbid conditions, and intellectual disability/abilities come into play, the face of autism could look different at different times in history. Yet another reason why the evolution of autism has been such a process and has taken this long.
So what can we learn from the history and evolution of autism spectrum disorder?
The history of autism spectrum disorder and human evolution are intertwined. Our understanding of the condition includes an increased focus through the years on things like:
- brain development
- brain function
- genetic variants
- cognitive abilities
- social communication
- social interaction
The list goes on and with it the evidence mounts. With that evidence the understanding rises, and methods of treatment get better. The way the general population sees autism and autistic people changes with it all.
The role of individuals with autism
As more people are diagnosed with autism spectrum disorder, their input and valuable insight into what autism means piles up. This fuels awareness, further study, understanding, and advocacy.
The role of parents and loved ones
As we saw above, the role of parents, caregivers, and loved ones’ on the evolution of autism spectrum disorder is directly related to progress. It’s important to continue to speak out, and keep moving forward.
The role of scientists, researchers, and physicians
Scientists, research specialists, and. physicians have had a profound impact on public health, wellness and understanding. It’s important to remember though, mistakes are a part of the process. As frustrating as it can be, we must remember that there is much more to discover.
The role of representation or lack thereof
Here’s a little secret, Owen is my kid, and as I am writing this I am still reeling from the dual diagnosis he received just this week of severe ADHD and ASD. One of the ways I am processing is watching a show called Parenthood in which a little boy with what used to be known as asperger’s is featured. That little boy and mine have so much in common, as his dad and I do with the parents in the show.
Tears stream down my own face as I feel comforted by the characters’ journey as it so closely resembles my own. Representation in the media is important. It changes the way people view autism, parents whose child has autism, and those who are autistic.
A more accurate representation needs to be adopted for these reasons, as many characters in the media do not portray autism in a way that is realistic, encouraging, empathetic, and builds true understanding. Each example is a part of history, and changes human evolution for generations to come.
Winston Churchill said, “Those that fail to learn from history are doomed to repeat it.” In the case of autism evolution, what we learn from history will help us continue to build on what others before us have done.
Sometimes understanding how a condition and its diagnosis came to be, how it changed through time, and how it affects us now is helpful. Understanding that the future can be brighter, more accepting, and valued is an encouraging truth. It’s one I am holding onto now.
I hope this little walk down “memory” lane has shed some light on how far we have come. We can celebrate the advances, and we learn from the mistakes as we move forward.
Mark, M. (2016). Evolution in the Understanding of Autism Spectrum Disorder: Historical Perspective.Indian J Pediatr https://www.cnnh.org/wp-content/uploads/2017/02/27053182-Evolution-in-the-Understanding-of-Autism-Spectrum-Disorder-Historical-Perspective.pdf
Evans B. (2013). How autism became autism: The radical transformation of a central concept of child development in Britain. History of the human sciences, 26(3), 3–31. https://doi.org/10.1177/0952695113484320