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 5,500,000
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.
Things that are on my mind lately: ” aha moments”
Things are kind of quiet and sad at our house. Our good old dog is ageing and it won’t be long before we have to make a painful decision. I am getting up very frequently to let her out at night and sleep is scarce lately. I am very very tired. This will be our last dog. Our cat too is elderly and has a chronic sickness, also not doing well. We have decided it would be unfair to bring a new animal into our lives at our old age and risk leaving an unwanted pet behind if we might pass on before it does. Risks of falls and all the chores of caretaking another animal might be too much as we continue to age. Animals have always been a very big part of my life, so my mind is working on this sad transition even as I expect it is coming soon.
So these circumstances got me thinking about my own ageing process. I am 70. Women in my autistic mother’s family tend to get dementia by age 80, although their bodies have gone on much longer. I feel as if my time is running out and there is a certain sense of urgency to almost everything I write or post these days.
Random thought two days ago. I am still sorting the past and gaining “aha” moments of insight, still putting past upsets, pains and struggles, humiliations, failures, etc to rest.
My mental filing system is working well and after maybe a couple of repeats even the worst memories agree to go to the “finished business” file where I send them and don’t seem to appear.
But with those issues settled, my brain keeps bringing new experiences from the past up for examination. I am rarely truly troubled by these memories as I have alread re lived and painfully examined them over time all these years, and can readily assign them to the files as soon as I recognize they too are “finished business”.
It crossed my mind that I have known about my autism for about 6 years, had diagnosis 2 1/2 years ago in Sept of 2022. I suddenly realized that I will probably be sifting, examining and sorting the past for the rest of my life.
I have loads of difficult memories in the memory bank to work through.
I wonder if I had obtained diagnosis earlier , would this still be the case?
I am willing to do the emotional homework, it is still interesting to understand those old traumas through the new lens of my autism.
I am randomly struck again by how truly impaired my sensory processing struggles and my neurology are. I have been so interested to follow random studies and look for blogs, books, articles on pages about autism, and to follow groups online which support older autistic adults and those of us who are just learning about autism and suspecting we may be autistic .
I made a comment in one forum about some books and links that had been helpful to me, and immediately after my comment, another participant listed many many websites and youtube, twitter, and other very recent media which all involve video and visual presentations.
I realized that I have missed out on many, many sources of input because I simply can not process video content (movies, videos, moving pictures or images of any sort or real life interactions/lectures, podcasts, etc) in “real time”. I was stunned with a huge feeling of loss for my inability to participate in those things.
I have long ago accepted my limitations, so the feeling did not last long, but the infrequent self insight is always an unpleasant surprise and involves for that short time a painful feeling of loss. I know everybody experiences these feelings off and on. It just tends to be something of a surprise. Like other “aha” moments it is a sudden unexpected insight sneaking up on me.
Like the disturbing memories I must file in my “finished business” mental file, and like the sudden insight into how impaired I actually am in one way or another, I suspect that I will also have other “aha” moments for the rest of my life.
I welcome most of those insights.
I have 68 years of not knowing about my autism to sort and understand. I have far less time on earth than that to continue to work to sort it all out. I truly consider myself a “work in progress” even at this late stage of life.
the getting older side of being autistic
My father used to quip about getting older “it beats the alternative”. Yes indeed, that is true.
Day to day struggles as we age make life harder for all of us.
Autistic people who are already struggling with life and how to get through it successfully may have more difficulty than whatever is “typical”. Nobody escapes it, everybody gets older unless they have achieved the alternative (death).
Health issues and simply living longer are extra difficult when autism is in the mix.
We are often less aware we are having physical problems due to autistic proprioception/ interoception difficulties.
Some of us simply don’t notice that “something is wrong” until it is discovered by somebody else and pointed out.
Some of us are afraid of going to the doctor, the clinic, the emergency room, some of us need a lot of support to do self care such as taking regular meds, getting regular checkups, “tune ups” and follow ups .
Many autistic people have hard times sticking to special diets, shopping for special foods or aids to help us be safer, being aware of safety, keeping ourselves and our surroundings clean and healthy, etc etc etc.
I am aware that those who have “normal” neurology may struggle with these things too, but I also wonder how many elderly with those listed problems might also be undiagnosed autistic?
We may be more prone to falls, to have more health issues, to get less care if studies of the past are correct. Overall, many autistic adults do not live to become old. Average age at death for “normal” adults is 70, average age at death for autistic individuals is 54 .
I guess I don’t have to emphasize self care and attention to safety as we age. We know we will all have more struggles as we get older.
Why not consider what things we can do at present to prepare for better self care as life gets harder.
Put safety precautions and self care at the top of the “TO DO” list today.