Number of studies growing
Well, sort of……….
Start by reading the article here. Since 2012 the number of studies about autism has grown. We are being studied and understood, but pay close attention to what is said here and look at the numbers !!!
Although extrapolation of USA Census and CDC information says there are over 5,000,500,000 adults in the USA with autism today, only a very small percentage of us have found professional diagnosis.
There is no idea or way to know about numbers of those of us who have found our own diagnosis and know of our autism without professional guidance. This number is growing as adult autistc individuals share information, post blogs, begin support groups and forums or internet pages with information.
The growth of information about adult autism seems to be in our hands because nobody else ( medical and support community, including researchers) is paying attention to this issue. If I was an autism professional I would think the sheer numbers of older autistic adults would be enough to persuade me to open investigations.
If there are needs being met and mined for profit in the younger generations, there are definitely financial prospects in finding ways to best serve adult autistic individuals as we age into the times when we need more specialized care that almost 75 percent of senior adults need.
The very few studies done to date show us that autistic individuals have more health care and housing and support needs than the average individual as we age.
There is very little interest in helping older adults gain diagnosis and support into older adulthood ( I use 50 and over as a “cutoff” age for referring to adults as “elders”).
The idea of using a new name to gain attention as a “tag” for this group of autistic adults is convincing and important.
A key word or words might help us find more information when we are mentioned in studies and articles.
Here is the catch. There is not more information to be had. Studies and articles must be produced and they simply do not exist in any number.
Very few significant studies have been done regarding autism and the elderly.
Very few are being produced today. It is mostly blogs like this, and online groups which are growing.
Information is being shared by autistic individuals for the benefit of other autistic individuals because it is not readily available in any other way.
Note the authors of this article proposed the word “gerontautism”.
Feedback from the community must not have been great because the proposed key word has been eliminated from the article.
This is going to be debated in the community as the idea is spread, and there will be many proposed key names or tags.
Many already use the phrase “autistic elders”. or “older autistics”.
The name for us as a group is less important than the discovery in this study that only .4% of today’s studies about autism have anything to do at all with ageing autistic adults.
Its not just the way we self describe, but more importantly that there seems to be such little interest in how this huge population of older adults is faring, will do in the immediate future and learning how society must change or grow in services and skills to support this population.
How will we prepare for our most difficult years and how will we accommodate and help our autism as we experience not only old age and all its disabilities and physical failings, but also our autism and the special and individual sensory struggles we must confront daily. ???
How will society train caretakers, provide housing and other care when we are no longer able to care for ourselves?
How will we train medical and support teams, how will we know what the needs of the autistic and ageing population are?
This is a plea to researchers to begin to ask tough questions about what happens when those with autism grow up? There are millions of autistic adults who are hitting the “elderly” mark of age 65 within the next few years. All of the baby boom generation will be over 65 by the year 2030.
More studies are being done now on young adults, but there is very little recognition that autism existed long before 1980 when the very first autism diagnoses were being done.
This is yet another call for professionals to become involved in research.
Time is getting short, there is much need.