My own personal blog is changing as I change
I woke up with thoughts and insights about how much my life has changed as my understanding of autism has changed and grown.
I have grown too, and it seems to me that had I known of my autism years ago I might have gained much benefit. Today’s understanding of autism has been most helpful, but of course a diagnosis until very recently would not have had the same sort of information to help me make the most of my world.
I have gone from simple wonder and gratitude and curiosity. I began sharing what I was learning as I went along, actively seeking new ways to try to reach out to individuals and groups to explain and inform about adult autism.
I began to try to show how diagnosis can benefit older adults especially, even those near the end of life, like me.
I continue to look for new information, scanning published reports and following blogs.
I participate in several adult autism support groups, and one for mixed age autistic folks as well.
I am learning that most published information from bloggers and those sorts of popup magazine like pages which have autism information meant as a 2 minute read are rarely accurate when they quote recent studies.
I am learning that blog writers often “get it wrong” too, when they use studies as reference in comments. One recent blogger claimed that studies proved people did not want to live in the same neighborhood as autistic folks, but when I looked up the study, that was a misinterpretation of what the study results claimed.
I encourage everybody to do their own research for better understanding. Don’t take somebody else’s word for it, go to the source whenever possible and see for yourself if what you are looking at agrees with what somebody else claims it does.
One huge difficulty is that so little research is being done on older autistic adults. There is very little information to glean from if we use studies as our source.
Many studies have confirmation bias, and are poorly designed, or are statistically invalid because of the very few numbers of autistic people involved in forming the group to study.
One “wild card” would skew everything on the study and all information would be suspect.
There are lots of preliminary investigations regarding autism in mice. I tend to be very skeptical of these studies because of the huge differences between mice and ( ahem) men.
If they can breed autistic mice, doesn’t that confirm that autism is indeed genetic??? (rhetorical sideline)
I have questions about the idea of autism being created in mice to begin with. Those things may be of benefit in 2055 or 2099, or they may be discarded, but anything gained is definitely not useful to me as an old lady who is fairly certain I have far fewer years of life ahead of me. Your thoughts and ideas may differ, and that is OK too. Autism in mice does not seem to apply to my own life and it seems unlikely that it will. I do not follow these studies because they will not apply to anything useful in my generation.
I am gaining confidence in my abilities, understanding my disabilities (some might say differences or weaknesses or “struggles” to stay within the politically correct center).
Knowing my strengths and weaknesses has helped me fashion a better life. I am able to make informed choices, understanding better how much energy, patience, determination, and focus it might take to embark on anything new or different. I am much more self forgiving as I recognize my problems with communication and socialization are due to my neurology and my hidden inability to understand most anything that happens in “real time”. I can allow myself to set my own boundaries and choose my own activities without feeling guilty because I do not do what “everybody else” does.
I am scheduled to do an interview for a newspaper about raising awareness of older autistic adults and the need for diagnosis. (April is autism awareness month)
I am worried about the interview, which will be face to face, and I am preparing an information sheet with facts to give the reporter, because I do not trust that I will be able to present information well in person. Anxiety will be very high and I know I do not make a good impression in person because of my awkward presentation, my slowness in understanding and my tendency to stampede in conversation when I am anxious. Years of conversational failures with strangers is not a basis to proceed from with confidence.
That is OK. If I can deliver the message that my life and my own self awareness was a far worse struggle until I knew about my autism and began to understand my past and my neurology, then I have done what I aim to do.
I am spending much more time on support groups interacting with other older adults, trying to encourage and share information that might be helpful to them as they look for diagnosis or come home with that diagnosis in hand and wonder “what is next?”
I think I am fairly well informed about autism and that I have a basic understanding of how it works in different people depending on the development or lack thereof in each of our nervous systems.
Now my work needs to focus on getting the word out.
We need more professionals who understand autism, who can diagnose autism, who can provide support in counseling and guidance in helping autistic adults to ease their struggles. This goes back to making people aware that adult autism exists, that autistic adults with hidden diagnoses are more likely to be suicidal, homeless, jobless, be low income, need health care, and statistically more likely to need help with struggles of substance abuse, mental illness, or to need assistance to access help for any of these challenges.
Please feel free to share the “you might be autistic” information at the top of the page. copy, paste, print, give to others to promote awareness of autism in adults.
Please share any information, comments, insights or words here with my permission as long as you do not use them as your own.
Please continue to help raising awareness of the great need for the growing populations of the elderly which will peak at the end of this century.
Send a note to your own local newspaper or magazines, professional newsletters, groups and pages.
There will be so much need for care and insights of all older people.
Knowing of our own autism diagnosis may help so many to have fewer struggles and to live better as we age.
Knowing autistic kids do grow up to be adults will help autistic children today have better lives as they mature.
Please join me in finding ways to bring attention to this need. There are over 5 million adults with autism over the age of 21 in the USA today. CDC and Census information statistics provided this information. ( you can do the math for yourself)
How many of us know we are autistic? I imagine that less than 1/4 of us know about our autism. You won’t find that statistic anywhere. People born before 1980 were very unlikely to be diagnosed with autism, since there was no standard diagnostic criteria at the time. Nobody began to look closely at children with autism until the 1990s.
Today’s understanding of autism is vastly different than it was in the 1990s.
When were you born?
4 thoughts on “Evolution of the autism blog”
My autistic daughter was born 1994. We didn’t get a diagnosis until 5th grade, so about 11 years old. She was misdiagnosed at 9 years old as having ADD
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Child of the 70’s, grew up in the 80’s. True to form of the era, they put me in a TAG (Talented and Gifted) program, which was good in some ways. I had no idea I was on the Spectrum until my late thirties.
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‘ … will peak by the end of this century’ I believe you mean: ‘ by the end of this decade’.
Great article Debra. You write courageously and kindly. Thank you
yes, you are right, glad you caught that, thank you.