Evolution of the autism blog

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?

Newly diagnosed Autistic Adults

Comments on forum are a strong argument for adult diagnosis of autism.

I was so deeply moved just moments ago.
I have a routine of checking in with each of the four on line autism forums I attend every morning.
One person had written that she was newly diagnosed and that she wondered what other people’s reactions to diagnosis had been.

People began to check in and tell their stories.
Some said they were initially shocked because they had no idea.
Others said they felt deep loss for things that might have been.
Some said they felt angry that they had spent their whole lives not knowing why they were different.
Some said they refused to accept diagnosis and fought it to begin with, but eventually became convinced the diagnosis was correct, and accepted it.

Every person (and more checking in as the morning unfolds – it is 5:30 AM as I type this) said that they felt relief because they finally understood they were not bad, wrong, morally inferior, weak willed, crazy, broken, hateful, spiteful, mean, cold, or any of the other labels they were given all the years they did not know and understand about their autism. Diagnosis explained so much!

Each person said it was a relief to have the answers to why life had seemed so difficult for them in so many ways.

Each person said it made so much difference in how they felt about themselves, how they saw their past struggles, and how diagnosis helped them make a new life with fewer struggles since knowing about their autism.

That parallels my own experience and speaks volumes about the tremendous need for finding lost autistic adults and giving them the tools they need to live better lives through gaining and understanding their own diagnosis.

I learned something from an article on autism and ageing the other day.
I had not thought of it before in this way.
This requires the assumption that autism has always been with us, rather than thinking it is an epidemic or sudden plague that appeared out of the blue in the middle of last century when it was first suspected and began to be explored.
Stick with me here.
If there are approximately 2 percent of every generation who are autistic, and autism has been missed as a diagnosis in adults ( childhood being measured from birth to the age limit of 20 years old), and there are currently ( as stated in the statistics I read) 5,500 autistic (diagnosed) people turning 20 years old every year here in the USA:
think about the 5,500 autistic adults in every generation each year who missed diagnosis simply because it was not done before 1980, and until very recently diagnosis was very rare.
People of the baby boom generation will have had more autistic people because there were more people born in that generation…
Half the baby boom population has retired, the other half is in progress of ‘coming of retirement age’. Using those same statistics, can we generalize that there are approximately 5,500 undiagnosed adults with autism reaching retirement age each year? How many are in the ‘over 65’ age category?

There are approximately 275,000 (between the age of 20 and 70) undiagnosed autistic adults in the USA alone. Of course this is only an estimate. Nobody knows, because that population is currently hidden. Actual statistics( I have looked at so many studies) estimate autism in all populations occurs at a rate of between 1 and 5 percent. I have assumed a conservative 2 percent for this discussion.

The relief of suffering in knowing yourself to be diagnosed with autism could reach and help so many people. We need professionals to diagnose, study, treat, provide therapies, care for, and otherwise support this group.

I hope that together we can raise awareness of this need and that we will soon see services provided for these truly lost and struggling generations.

OK, this is corny, but you will understand.

“I once was lost but now I am found”.
It has made all the difference to me. I hope others can be ‘found’ too.

Diagnosis attempt # ???

How things change overnight!

Yesterday I woke up depressed, it had been weeks since we got the phone call from the kind doctor who had begun my diagnosis here in this state, but had become so sick that the work was discontinued.
I have been full of anxiety and hope, dropping to despair as it became evident from his website stating that he has retired in July, and from the formal notice from his lawyer just before he phoned us, that he was not working any more.
The final appointment would not happen.

His ( Dr) lack of calling us back after a phone call to his office as he had directed, plus an email 2 weeks later had no responses.



I was sure this was a case of the good Dr’s health interfering and perhaps he might have more “want to” than “can do”.

Yesterday morning I gave in to the blues and felt sorry for myself and discouraged, determined to look only toward the July 2020 appointment already on my calendar with the Illinois Dr who is a well known author and who I am sure understands autism in adults/elders.

Yesterday while I was out of the house running errands the kind doctor called again.

My husband set up an appointment with him for the end of this month Sept 2019.

I am in shock. Afraid to feel hope or relief. I don’t handle sudden transitions that well, even if they are positive.

Dr said he has good days and bad days but wants to go ahead and finish this diagnosis as his health allows. We are to call or he will call a few days before the appointment this time to confirm that he is well enough to proceed. So many emotions whirling around inside me, so many seeds of hope afraid to sprout, so many doubts that this will finally actually happen, so many worries about “what if he tells me I am not autistic”???

and so on.

Sudden changes and arrangements needed! Let alone the arrangements needed to get downstate, hotel reservations, dog boarding, etc. Thank goodness I have my very supportive spouse to lean on. The days are going to drag now until appointment time and I will have a difficult time concentrating on much at all until I finally know.

I am hoping I can get rid of the diagnosis labels the first neurologist gave me , and not be saddled with those throughout the end of my life. I can see where I might end up being drugged and worse if I am ever hospitalized or must have nursing home care. One look at that chart!!!! Saddest of all is that so many older autistic people with struggles are misdiagnosed every day and some spend the rest of their days in conditions such as I just described. Younger autistic women are frequently misdiagnosed as Borderline or Bipolar and treated with psychotropic meds which do little or do damage to them in countless ways.

I am working hard on a series of descriptions and questions to help identify older adults with autism. I have spent countless hours on the internet looking at studies, at current test forms, at the DSM V , and many more hours reading blogs and interacting on a few forums /online internet groups.
I have asked a couple of these groups to collaborate with me and give input.
Each group has over a thousand members and I have gained much good insight and feedback.
The final description of adult autistic recognition and questions to ask to help understand if one is autistic, will be posted here as soon as it is finished.
The reason I do this is because so many of the diagnostic criteria and the tests and forms available to diagnosing medical entities today are aimed at diagnosing children.
Very few autistic adults present now as they did at age 4, 9, or 12, or even 25.
We learn to adapt, we exchange innocent stims for hidden ones or more socially acceptable behaviors. We adjust ourselves in many ways to try to fit into the world, masking skills probably increase for many of us as we age, but the underlying neurology remains the same and our struggles are real and often overwhelming.
A look “below the surface” can tell the story we have worked so hard to hide.
Knowing I am autistic has changed my life in countless ways, all for the better. I hope presenting these traits and questions will be useful to somebody as a help in finding undiagnosed autism in the elderly.

My own official diagnosis is pending. I hope I can help others find peace in knowing that autism was behind so many of the struggles and the pain of the earlier years in life.