Today’s understanding of autism means more are being diagnosed.
I have been reading the news! Headlines report a huge and alarming increase in the occurrence (diagnosis) of autism. Statistics are quoted, speculation abounds, as in many other facets of experience with autism, politics swing, sway, hold court, agitate, educate, and exacerbate opinions and fears. We can see the work of the press, pharmaceutical advertising, faction groups, appearance of pop culture heroes with opinions all over the internet in articles, videos, podcasts, sub -culture groups, and videos, popular social forums and sites where many people now obtain their news.
Here is the thing. Although statistics from previous record keeping show increase of autism by leaps and bounds, record keeping and definition and understanding of the nature of autism as well as guidelines for diagnosis has changed dramatically over the years.
When Autism was first discovered, documented, and began to be an official medical/psychiatric diagnosis, it was not well understood.
Official diagnosis began around 1980. It was a huge relief to have a few explanations or definitions for so many severely impaired individuals struggling in institutions and care homes.
Autism was at first diagnosed only in people who today would be called “profoundly autistic”.
Autism is still the “new kid on the block” as far as scientific understanding goes. The very first person diagnosed officially as autistic only recently passed away.
During that time much has changed, from recognizing signs of autism to the way it is understood.
Instead of a behavioral disorder, where focus was on changing the problematic behavior of autistic individuals, we know today (through scientific research and huge gains in the tools we use to analyze and discover genetics, neurology, biology, the brain, behavior, etc. )
that autism is caused by uneven development of our neurology long before we are even born.
It is primarily genetic in nature, is not due to trauma, pollution, medications, foods, brain damage, vaccinations, or evil spirits.
Autism is not caused by exposure to things after we are born, not caused by injuries or diseases, we are born with autism and we die with it.
Other conditions may closely mimic autism and with no defining feature common to each and every autistic individual, some who have had brain inflammation, trauma, or other physical or chemical causes for their neurological struggles may end up with autism diagnosis. Science and understanding are always “works in progress”
Autism has been present in the population for generations even before it was named. In my own family, it seems autism has been present since at least 1859 when my great- great- grandmother was born. She spent the last 15 years of her life in an institution and there are letters and other papers to document her unusual behavior and “strangeness”.
In literature and philosophy and general social culture, autistic people were ‘fools,” “idiots”, “simpletons”, often even then classified by lowest possible social standing.
In the 1980s it was believed that autistic individuals had no empathy, would never marry, would have no friends or relationships, never hold a job, and must be trained like animals to function at all.
( read a complete history of autism including the changing theories and definitions of autism as science and medicine has advanced – I have written articles on autism history near the beginning of this blog if you want a compact version)
Today we know people like me can be autistic, too. I am married, have a family, read and write and have been gainfully employed. The understanding of autism and the parameters which define it have undergone a massive evolution. Statistics available tell so little of the actual story of Autism and are grossly misleading when cited and quoted without context, definitions, or explanations.
People speculate that some of the most brilliant individuals in history may also have been autistic, but that “branch” of Autism was not understood “back when”.
My mother (born in 1929) was called a “simpleton” by her parents and siblings. When I got my own autism diagnosis at age 68, long after she had passed away, it was easy to recognize that my mother and probably her mother too, were autistic, as was the before mentioned great great grandmother.
In each generation of that family line, there were suicides of young women up to age 30 and of men 50 and over for as far as I can trace that family line ( late 1700s).
I suspect this also shows autism runs in this family line, although when those people lived nobody knew about autism. Suicide rates are up to 8x higher in the autistic population as compared to the general population.
Today there is still no defining single test to determine diagnosis of Autism. Science is still avidly looking for one! Nobody can say “for sure” an individual is autistic through dna, blood, or other tests, and there is no physical “look of autism” to give clues.
The only thing every single autistic person has in common is that their uneven neurological development is discernable and definable in many ways. What neurological struggles we have are different for each of us depending on how our neurology “develops” before we are born.
Descriptions used to diagnose autism today are extremely different from the descriptions used in the 1980s.
Today’s media or other people examine the medical statistics which quote the huge rise in numbers of the diagnosis of autism, but there is little understanding that it is because autism is being recognized more frequently, the parameters used for diagnosis have been widened, narrowed, redefined by science repeatedly. This is bound to continue as understanding continues to grow.
It is not because the actual frequency of autism has increased.
Society, science, and medicine are forming new understanding of autism and the statistics are reflecting this.
Keep an open mind and remember that what makes good headlines and sells news is shock, fear, anxiety, scare and horror. Who benefits by this sort of reporting of statistics with no actual understanding of autism, its history, or its changing definitions? Follow the money.
“Autism for profit” is a big deal these days, watch what you use as your source of information, find more than one source if at all possible, look for the motives, the movement of money, the politics, and explore the science and the history of what is reported with such shock and fear headlines to find the “real story” behind them.
Brava! I can trace my late-diagnosed autism back to my biological grandfather.
I didn’t seek my diagnosis to be fashionable. I sought my diagnosis because of the cracks appearing after becoming a widow – the event that exceeded my capacity my mask.
A year on from diagnosis, I am learning more about myself every day. I see the autism in both my biological parents. It is my privilege to be their advocate, and to tell their story, along with my own.
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According to _In a Different Key_, basically, since government agencies started reporting on the numbers of diagnosed people, they have increased. It’s been this way for 30 years. Because medicine keeps improving their understanding.
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One of your best, Deb!
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