Adult diagnosis of Autism

Things you might not know

It might surprise you to know there is no standard procedure to determine or identify autism.

There is not a genetic test, a test for chromosomes, blood test,
a certain “look” or appearance ( You don’t “look ” autistic) for autism.

There are no standard characteristic behaviors that all autistic people share.

Science is still learning how best to identify autism. In recent years more information has been discovered that has helped shape our idea of autism.

Autism’s rarity (believed to be 2 to 3 percent of the total population although nobody really Knows, since diagnosis is often missed, especially among minorities and among women).

There is not information about autism in many cultures around the world,
its frequency, nor is there understanding of autism at all in many places on earth.

Many diagnosing doctors in “developed” countries around the world are using information that is decades old, and these “specialists” may not be seeking new information besides what they learned as students.

Information in books is not up to date- by the time any book is published much information is already dated.

Consider then, that those professionals who went to school 30, 20, or even 10 years ago will be using information they learned that long ago from books that were outdated when they were studying them, and attempting to apply it when they try to diagnose autism.

Unless they have made autism a specialty, only 2 or 3 percent of any neurologist, neuropsychologist, or psychologist’s clients will likely be autistic.
With so little understanding and so little practice at sorting information regarding diagnosis, is it any wonder that even when we attempt diagnosis by a professional, so many of us (autistic folk) are given misdiagnoses?

Don’t be dismayed if this happens to you. You can keep seeking diagnosis with somebody who specializes in autism and has experience with adults, minorities, women, elderly, etc. depending upon one’s self description. There will be difficulty today in locating such an individual.

Many adults report living with misdiagnoses and being unsuccessfully medicated or given treatments for disorders they do not have until their autism was discovered. How many others are out there still, being given ineffective treatments, being told they are atypical or intractable examples of their (wrong) disorder?

If all treatment fails and you are still suffering and not finding change or relief for your diagnosed disorder, you may have been given a false diagnosis/label due to the lack of familiarity with autism and the many ways it can present itself.


Today autism is diagnosed by observing behaviors, testing neurology, discussing one’s life history and quirks and struggles. Everything depends on the skill and experience and up to date knowledge of the diagnosing professional.

The only criteria that is used is behavioral.
There is no other criteria at this time that can be used.

Autism is still new to science and until very recently there has been very little understanding of autism as having a neurological basis. Even in the past 5 years autism is described as being neurodevelopmental and based in the differences of our neurological development as compared to “average” or “normal” development in our peers.

Obtaining diagnosis for autism in adults will become easier in time as better tools are found and applied by more competent and better educated professionals. That time can not come soon enough for the over 5 million autistic adults in the USA, most of whom have no idea they are autistic.









How to Seek Diagnosis

Common question with multiple answers


It has been almost 2 years since my formal professional diagnosis. Since that time I have read countless blogs and participated in multiple forums for autistic people of all sorts.

One of the most commonly asked questions is “how do I seek diagnosis”?

Unfortunately, there are very few competent diagnosing professionals for adults with autism, or suspecting autism. Information about autism is being updated almost daily and many professionals fail to keep up with changing ideas and thoughts about autism.
It is still very common for an adult seeking diagnosis to be told it is impossible for them to be autistic because they are in a relationship,married, have children, make eye contact, hold a job, or live independently. Many diagnosing professionals believe that autistic people do none of those things.

Many adults seeking diagnosis are turned away with the diagnosing professional saying it is too late anyways, “you are already living your life and what good would it do to get diagnosis now”?? “there is nothing we can do for you now”

Those seeking diagnostic services as adults need to be aware that it is possible, even common to encounter rejection, mockery and ridicule, misdiagnosis, and misdirected “treatment” with both drugs and recommended “therapies”.

How do I find a competent diagnosing professional?
Here are a few strategies gleaned from much discussion with others over the period of time since I was finally able to obtain my own diagnosis.

Be prepared to travel long distances, pay out of pocket, and recognize that it may take a very long time.

Many insurance companies will not support “testing for autism” but will support psychological or neuro-psychological testing in general.

Check to see if your insurance covers psychological testing. Part of the testing process may be covered by insurance, medicare, or supplemental insurance, but it is likely to require co payment of some sort. If money is an issue (and for most people it is a big one!) check out the coverage you might have first. Ask if they will accept client (you) claim submission for out of pocket payments using “out of network” psychologists.


While you are talking to the Insurance company ask them if they can recommend psychologists or neuro- psychologists who accept their plans.


Do you know others in your area who have obtained diagnosis as an adult? Is there an autism group, support group, or other autism (therapy, social, etc) group in your area? You may find diagnosis by asking these groups for recommendations or referrals. Even if the group is for children or minors, many of those parents may also be autistic or have obtained diagnosis. Most will be glad to share the name of their diagnosing professional.

You may be told by insurance to visit your GP for a referral. Many GPs may know somebody in their professional circles or within the group they practice in. Many will not .

Finding diagnosis can be a struggle of its own, things are gradually getting better, but for most of us who missed diagnosis in the 80’s and earlier, we can expect to have to be persistent and diligent in our search and to rely on patience and self care to see us through.

If personal contacts do not bring forth names of professionals willing to work with you, you can ask in forums and pages on the internet.

There are lists in some internet groups depending on location, which have contact information for diagnosing professionals.

Cities with high population, teaching hospitals, and medical colleges will be more likely to contain a professional who is experienced in screening adults for autism.

There are individuals who are willing to do diagnosis today online or on the telephone using webcams and other technology. Covid has made this possible and can be a blessing for some, but be aware that if you are seeking disability or legal accommodations in the USA you will likely need to present documentation from a USA doctor and it will have to be part of your medical records.
Internet medicine and related practices is full of fraud and if you can not ascertain an established practice with a physical address, phone, email and other contact information, or if you can not find documentation from the state (Doctors and businesses must register and be certified or licensed by the states where they practice, and those documents are public record) then do not proceed!
Verify credentials and any internet information using at least 2 other sources. In eagerness for diagnosis, don’t be duped by slick imposters and tricksters.

Locating possible professionals is only the beginning!

Calling or emailing for information comes next.

1. Express interest in obtaining testing because you suspect you may be autistic.

2. Ask if the professional sees adults, older adults, women/or other descriptions of your self identity

3. Ask how many autistic diagnoses the professional has made. How many women, etc?

4. Depending on the answers, ask for the professional to phone you regarding your interest in being diagnosed. If the professional does not call you back and you are pressed to make an appointment, do not proceed.

5. When the professional phones you, ask the questions 1 through 3 in person, and see if you get the same answers.

Do you communicate easily with the professional? Do they answer your questions and ask questions of their own? Proceed to make an appointment to meet and talk in person about the diagnostic process.

Do you feel as if they are being abrupt, impatient, condescending, or are angry with your questions? Do they push off or put off your questions and prompt you to make an appointment for diagnosis rather than a pre- diagnosis meeting right away? Do not proceed if these warning signs are present.

Other questions to ask: How many tests have been performed and how many adult diagnoses given?

How many women, or other self descriptions have been diagnosed?

Do they give follow up support? If so, what sort of supports are offered? ( therapy, support groups, reference to others who might be able to help with specific needs?)


Discuss fees and if you decide to make an appointment to discuss diagnosis processes, be sure you understand how the paperwork and billing will be handled ahead of time, so there are no surprises.

Some doctors will refer you to their offices for this part, that is OK, Be aware of your insurance company’s needs regarding diagnostic assessment, etc… do you have to get the appointment pre-approved?

More discussion about finding diagnosis soon.

Note: This process can be very discouraging and frustrating, especially for those of us who have struggles using the phone, camera/video communications, or have anxiety. Self care is so important.

Be aware that finding proper diagnosis is not generally easy for most of us today. (autistic elders).

Things will take a lot of time and we may reach many dead ends or barriers, but we are not without alternatives in most cases.













The cost of misdiagnosis

and missed diagnosis regarding Autism.

I have been searching and researching for information and studies, statistics, etc regarding the missed diagnosis of autism and its misdiagnosis as “something else”.

Interesting to me is that most times when I searched, I found many discussions, studies, conversations and articles about children being misdiagnosed with autism when they were not.

It seemed to me as though this is a common question among parents with newly diagnosed children. Maybe difficulty accepting diagnosis, maybe wishful thinking/ denial? I was amazed to find page after page of discussion about how this could happen.

I found very little regarding misdiagnosis of adults with something else when instead they should have been diagnosed as autistic. I have commented many times that there is a vast vacuum/ echoing empty space on the internet in place of articles about adult autism, finding older adults with undiagnosed autism, etc.

I participate in multiple on line forums especially for autistic adults. One common topic is how so many of us have garnered so many diagnoses of all sorts before we knew were autistic.
So often a forum member would explain that their bipolar, their schizophrenia, ADHD, Depression, anxiety, or their other diagnoses were atypical and did not fall into the usual categories of definition. Many have been treated for years with partial to limited success. Many have given up trying to get help because the continual lack of success is so discouraging.

Discovering that they are autistic and understanding their diagnosis had freed many from series of unsuccessful treatment attempts, from shock therapy, over medication, institutionalization or hospitalization for intermittent periods, and on and on. Traditional analysis and therapy are often unsuccessful. I went to several other therapists before I finally found one I could communicate with, who understood me, and was able to help. I was treated with medication for years for depression and even more so for anxiety.
Now that I know I am autistic I have understanding necessary to give me a great deal of relief where traditional treatments had failed.

What if all of us had got proper autism diagnoses earlier? How much emotional pain, how much suffering, how much damage due to side effects of powerful anti-psychotic medications, how many social struggles such as unemployment, poverty,homelessness, suicidal behavior, emotional outbursts leading to trouble with the law, hospitalization, etc could have been prevented?

This post breaks my usual policy of not sharing documents and links to other pages because it explains everything I wanted to explain in my blog, in better words than I could explain it. Please read and think about how much we as a society have lost with our lack of understanding of autism, lack of training specialists and giving them tools to properly diagnose autism, the lack of access to diagnosis, the struggles and troubles that could be averted if we finally understood our own autism and were able to see how to make accommodations and to use self care or access tools already available in many places to help us in ways that we need. Finally needs of older undiagnosed adults is being recognized and brought to light. The voices of many have been raised in chorus and at least in some circles, we are being heard. Feeling grateful.

https://link.springer.com/article/10.1007/s00406-020-01189-w

What happened to all the autistic children?

They grew up to be adults!


Awareness is rising about autism and most people have heard of autism. Autism is primarily thought of as a children’s issue in the eye of the general public. What happens when these kids grow up? What happened to all the children who grew up before autism was commonly diagnosed in kids? They are now autistic adults!
If the CDC is right, there are well over 4 million autistic adults in the United States alone, and most of us have never suspected we are autistic.

How do we find autistic adults today?

Autistic people are more likely to be suicidal.

Autistic people are more likely to be victims of crime.


Autistic people have a higher rate of depression and anxiety.

Autistic people account for about 10 percent of admissions for treatment in rehab centers for alcohol and drugs ( compared to 1 percent of the general population admitted) This is truly stunning when you understand that autism is believed to affect 2.2 percent of the general population.

Autism may account for up to 10 percent or more of the homeless population.

Autism may be involved in those admitted to jails and prisons although very little or no research has been done specifically on autism. Intellectual disability in general has been studied as a factor in prison populations and shown to be present in higher than normal levels among the general population.

Autistic people tend to have poorer health and to die younger. Life expectancy in some studies is as low as 38 years. Other studies say around 58.

From these statements one can see how knowledge of autism would be particularly useful to certain groups. Doctors and health care workers of all types, law enforcement professionals, social workers, can you name others?

Diagnosis of autism as an adult can change lives. Self understanding is one of the keys to finding a new life amid common social struggles. Autistic people seem to have more than our share from a statistical reporting level at the very least. I can not tell you the huge difference my understanding of my own late diagnosis has made in my mundane and every day life. I can only imagine how useful such self knowledge can be to those struggling with such difficult issues in their lives, and how useful it would be to know and understand about how autism may have been involved in so many lives of pain and hardship.
I am reading of mandatory screening for autism in new hospital admissions for suicidal behaviors. I am reading of mandatory screening in clinical situations for care of those struggling with addictions.
I am grateful that professionals in some places are using today’s understanding of autism to help recognize and diagnose autistic adults. So much more needs to be done. Please help spread the word.

Autism Awareness April

April has been designated Autism awareness month once again.

The word is getting out. Autism awareness and acceptance news is spreading.
This is a challenge to all of us to go one step more, some of us will make posts, give talks, write our blogs, participate in other awareness and acceptance activities.
I hope we can add awareness of autism in adults to the things we discuss this year. (2020)

Extrapolated from the most recently completed USA Census, There are 1.6 million children in the USA (2 percent of the total population of those under age 18) who likely are autistic.
Awareness is rising and help is becoming available for children. Never quickly enough but we are definitely making progress.

Children do grow up. Here is a statistic that might surprise you.
Did you know there are likely 4.2 million autistic adults over age 18???
(2 percent of the adult USA population age 18 and older). Did you know the majority of them will be completely unaware of their own autism?
Please share these statistics. Those of us who are affected by autism know the difference a diagnosis makes in our lives.
Thanks for sharing, and for promoting understanding of autism in all ages.
Learn more here:

https:// oldladywithautism.blog/author/debrabrisch3436/

feel free to copy and paste! Share Share Share thank you.

Summary Report

of my autism diagnosis from 2019.

It finally came in the mail yesterday. I had waited in anticipation for months.

Earlier in the blog I have been telling the story of my struggle for diagnosis. Finally the last bit has fallen into place. It is finished. I have papers now that say a professional has diagnosed me as autistic at just short ( 3 days) of my 68th birthday.

Last visit with the psychologist was the last day of September. He promised at that time to have a written report finished and to me within a few weeks. I waited a couple of weeks before I inquired at the office.. I had not got a bill, I had not got a report from the doctor… I was told that my bill had been sent to insurance and to wait until we heard from them before asking again. I got a call from the Doctor saying he had had a relapse and that he would get the report to me before long, certainly before the end of the year. I felt terrible that he was under pressure to finish this when his health condition is so severe. I waited in growing distress about his health and about gaining the paperwork to finally make myself completely “official”. I did not want to pressure him or add to Dr’s struggles which must be overwhelming and so sad for him and all his loved ones… but I still was anxious about seeing the final report.
There was a fat envelope in my mailbox when we got home from grocery shopping yesterday. 5 pages summarizing both visits and the doctor’s observations, the way I presented myself at the interview and subsequent testing results, all there for me to see in black and white.

There were terms I was not familiar with, and I looked them all up, thought I would repeat them here so everybody can understand them. I knew about ‘flat effect’ but was surprised that he mentioned that I present with flat effect. I had no idea! Flat effect is lack of expressiveness in facial or body movements (reflecting emotions) and can also mean flat tone of voice or odd expression or inflection of voice when speaking.

He said I did poorly on information sub tests… I was amazed at how poorly I scored in visual processing, auditory processing, and he mentioned visual-spatial struggles, motor and sensory struggles.
He said I had ‘cognitive impairment” with these 2 categories. It means I have struggles to understand , something that has been with me all of my life.
I have been aware I had struggles, but the very low scores in both visual processing ( 25th percentile) and audio processing ( 34th percentile) was a bit of a shock… Those scores are very low! I was stunned for an hour or two, and my primary reaction now is to wonder how I have lived life and done as well as I have in spite of those handicaps.

The answer of course, is because I am very good with words. My vocabulary and verbal comprehension came out at 98th percentile… My ability to use and understand words is my real strength.

These things are all things I had understood before and at the time of my tests and diagnosis, but I would like to point out how extremely different my scores were on these tests, either I was quite good, or I was very very bad. One of the primary descriptions of autism’s effects is that it causes uneven neurological development. I’d say this report is a good example to illustrate that description.

I am of high average intelligence and there is absolutely no doubt I am autistic.
I was interested that the doctor said if Asperger’s diagnosis was still in use, that is the category I would fall into. But as DSM 5 does not offer that choice, I am autism level 1. I am autistic

I am so grateful to have my diagnosis through the generous work of the kind doctor; in spite of his failing health and his own personal troubles, he took the time to see my plight and to reach out to me to complete my report. I am to be his final diagnosis. He retired in July of 2019 due to his health, but he offered to work with me for a diagnosis after that. Now the work is complete. He has given me a gift I can never repay. Feeling blessed.

autism in elders

raising awareness

This is the first edition of my one page autism in elders awareness flyer. Everybody is welcome to reprint and distribute it if you see fit to do so.

AUTISM in older adults???

Autisticelders@gmail.com
Autistic Elders on Facebook. ​https://facebook.com/groups/543548473159235/
Blog ​https://oldladywithautism.blog/author/debrabrisch3436/


LOSER! Thoughtless, rude, cold, uncaring, inept, inappropriate, failure, outsider, weirdo, clumsy, out-of-it, gullible, stupid. Have others given you these labels? Has it seemed impossible to do anything right? Have you been told it is all your fault? Do you think your life has been much harder than other people’s but not sure why?

Do you have trouble understanding what other people expect of you? Are people often angry with you and it is not clear how it happened or why?

Are you too open and trusting? Is it difficult to stop others from using or abusing you?

Are you bullied, and do you understand why?

Are you estranged from family members or do you have few or no close friends?

Have you had “people problems” at home, work, school, and other places?

Are you often frustrated, hurt, angry, sad, depressed, or anxious? Do you feel misunderstood and socially isolated? Do you have a sense of “otherness”?

Do you wonder why it is so hard for you to do so many things that seem to come easily to others?

Do you self medicate using cigarettes, booze, street drugs or other things to help you deal with life?

Do you have a very narrow range of interests, but the interests you have are intense and all consuming?

Do you have a lot of self blame, do you believe the negative labels you have been given?

What if You found out that it was not all your fault after all?

What if I told you that you might have an in-born neurological difference and that you have struggles that other people simply do not have because of your unusual neurology?

HAVE YOU HEARD ABOUT ADULT AUTISM ?

Today most scientists believe that autism is probably genetic, although causes have not been completely identified, there are several genes that have been identified as associated with autism. Autism is present at birth, it is not caught, does not develop, can not be cured.

Autism causes uneven neurological development and is present at birth.
All autistic struggles are based on neurological functioning and have to do with sensory processing. Our understanding of our whole world is based on information gathered and processed by our senses. Every person with autism has sensory processing struggles, but in every autistic person the struggles are different.

What happened to all of the people with autism before 1980? We are the Lost Generations. We grew up struggling and being blamed for our lack of success. Nobody knew! Autism affects approximately 2 percent of the population according to conservative estimates. Some studies suggest autism may affect up to 7 percent of the general population. There are millions of undiscovered and undiagnosed adults ( over 21) who are unknowingly autistic in the general population. Autistic struggles can be recognized and helped with diagnosis. Diagnosis can be life changing.

Diagnosis even at a very late age can bring healing of hurts, self understanding, and provide new ways to live a better life through accommodations once it is known that one is autistic.

Are you somebody who is struggling in life? Do you know somebody who might find the descriptions here familiar? Undiagnosed autistic people have gone through life not understanding that so many of their struggles are not their fault, that life really is more difficult for them, and that there are many ways to make life easier once we know about our autism.
Contact Autistic Elders at ​Autisticelders@gmail.com​ or check out the links at the beginning of these pages for more information.

SELF DIAGNOSIS

is valid. Here’s why”

I am tempted to simply write bullet points by number here, but there is too much in the details that might not be seen in just an “overview”. Typical of an autistic person, it is not just the ‘general idea’ but the details upholding that idea that are the meat and potato of the sweeping statement given by that bullet/number.

Our information base about autism is growing. Medicine and Science uncover new details and specifics about how autism works, how it functions, how people adapt and overcome its effects, and so much of that information is not found in the texts and school class lessons being given to the future doctors, nurses, analysts, supporting staff about autism. Autism even for neurologists and psychologists is only a couple paragraphs or at most a “chapter” presentation at school out of hundreds and hundreds of hours preparing those who will diagnose and serve the coming autistic generations.

Those who practice medicine, neurology, psychology, social work, and other supportive specialties are taught about autism from the perspective of an 8 year old child, what their behavior is likely to be, what the child’s perceptions are likely to be, and what the identifying factors to spot an autistic child in a classroom or your own examination table is likely to look like. Unfortunately for most of us, this autism symptoms/diagnostic model is based on a 5 year old male.

Those of us who are older will have gained many coping mechanisms and adapted behaviors due to pressures from families, friends, teachers, classmates, co workers, etc. As autistic people age they become less and less like that innocent little 8 year old.

Yet in the forums I attend online I see posts every day about misdiagnosis, autistic women and men being told that they speak and are eloquent, they make eye contact, they don’t walk on tiptoe, make odd intermittent noises, bounce or spin, nope, not autistic. Oh, you have a family or hold a job? You can’t possibly be autistic! You have social struggles and recognize that you are bullied and ostracised, you can not be autistic because autistic people don’t know they are being bullied. Doctors then say” It must be YOU and your bad behavior. YOU need counseling urgently to change your ways.” End result of this ignorance of autism: You are diagnosed as being bipolar, ADHD, Schizoid, Borderline, hysterical, anti social, passive aggressive, or more than one of those false diagnosis instead of as autistic. NOTE this does not mean that one can not also have diagnosis of one or more other conditions to struggle with. If you have been treated for any of these conditions over long periods of time with little or no success, consider the possibility that you may have autism instead.

This is more common than rare because so little has been known about autism and those attempting diagnosis have a fixed idea taught from their own youth in school maybe 15 to 30 years ago about what autism “is” and how it shows itself for diagnosis.
Most of those diagnosing people have never bothered to update their understanding of autism using todays information.

Using USA census statistics, from the Population Reference Bureau in Washington DC I have calculated that there are over 1,046,936 autistic people in the USA over age 65. Only half the baby boomers are now over 65, with the whole generation reaching over 65 in age by the year 2030. Population to support this group as it ages is shrinking and predicted that only 2 adults per senior citizen will be there for support of all kinds. This will mean shortages of workers for every field. Less support for medicine and research, less support for health care, less support for all the other things we rely on, who will grow the groceries, work in manufacturing, teach, run stores of all sorts considered service industries. Dynamics are changing quickly but we may not see this. Of the over a million autistic adults in the USA, how many will get recognized as autistic, get accommodations, get the help they need to succeed as they age? It is so important that the people in medical college in this and coming generations learn how to recognize and diagnose autism in senior citizens and even younger fully grown adults. There is a huge need for autism specialists of all kinds, and more will be needed by 2030. If you know somebody who is thinking about specializing, there is no greater need at the moment than for diagnosis and support of the autistic community.

Because actual professional diagnosis by professionals in practice today is so under prepared, under educated, and under experienced with autism, many must turn to the autistic community, to computer studies online, books by specialists in autism, and other resources to get good current information regarding autism, and especially how autism presents itself and acts in older adults. There is no shame in being self diagnosed. Frequently there are no other resources available due to the few diagnosing services available for the adult community. Most on line groups recognize this struggle as valid and are very supportive of those who find professional resources outside of their reach due to financial , location, and availablility considerations. Things may differ in other countries. I read reports from individuals about how it can be in other countries but have no personal knowledge of this information.
So, How do we set about self diagnosis? It can be done multiple ways.

You can take online tests and tests that have been developed in specialists books. You can join autistic forums and ask questions. There is probably a higher level of ready insights, actual experience, and information available on these forums with large numbers of members. The combined wisdom and experience and the empathetic treatment of those new to the idea of being autistic are powerful to experience, see, hear….

In earlier blogs I have worked through the Diagnostic Manual used for diagnosis of autism today and discussed what they are looking for in each section. Later I worked up a list of things we can examine in our own lives that might point to being autistic. If you have come so far as to reading blogs about diagnosis of autism in old folks, you probably already have a strong idea that you might be autistic. We are on the very edge of a dawning of the real way autism works in our lives, the nature of the autistic experience, how varied the ways autism presents itself. I hope for a better future for all of us who have remained undiagnosed, misunderstanding, self hating, struggling in so many ways when knowing your own diagnosis of autism will help find new ways of seeing, doing, and managing so many of the troubles that are now upon us. Lets see what we can do to speed the process along.

Newly Diagnosed

What next?

I was 66 years old when I finally figured out that I am autistic. I had never suspected, never really thought much about autism, except in the way one reads about autism in superficial special human interest publicity pieces .
I had a few general ideas about autism because a dear family friend had a child diagnosed with Asperger’s while our children were growing up in each other’s houses as friends do. I just never saw parallels in the child’s behavior to mine, perhaps because he was a child.
His father is on the spectrum although nobody knew that at the time. Maybe not so coincidentally I found that of all the people I knew, the communication between him and me was perhaps the easiest and most natural I had experienced.

The last job I worked before retirement was as a caretaker in a State run home for children, and most of the kids were autistic. I never recognized myself in them.
I knew I had social struggles, I was bullied at every job I ever had, including the last one mentioned here. But I never associated one problem with the autistic struggles others were having.

I had too much to do in every day life, making sure my home, family, pets and gardens were all taken care of and trying to meet the requirements of working as well.
Every day there were multiple ‘fires’ to put out, crisis after crisis. I was always stressed, anxious, exhausted. Who had time for self examination and introspection?
It was not until after I retired that I began to suspect I had autism. Somebody sent me one of those on line self tests and the results suggested I was autistic, and that I should explore the possibility. It got me curious. No, could that be true?

I had the free time after retirement which had eluded me all my working life, and I jumped into research about autism. After a year of reading studies, autism descriptions, statistics, opinions, and doing every self test available on the internet, and buying a few books with autism basics (and one self test of great depth). I decided that I am indeed autistic. I am fortunate enough to have all the free time that retirement gives you for searching and introspection. If you are working you will have much less time to devote to your search and it may take much longer to work through the idea of being autistic.

The blog tells the rest of my story, right down to my finally being “officially”diagnosed about 3 months ago.

For so many of us diagnosed either by self exploration or “official” means, finally knowing about our autism is a huge shock. The idea we might be autistic means that everything in our thoughts, beliefs, attitudes, and behaviors may change. Scary stuff indeed!
We autistic folk tend to be somewhat rigid in thinking and may not explore again issues that we think we understand. People tend to be less flexible in general as we age. My son says I am ‘willful’. Stubborn old men and women decorate pages of history and legend. It is a stereotype which probably as a basis in some truth.
We may have known life was difficult for us, but unknowingly believed that everybody else had struggles like ours, and in my case I thought a lot of the struggles I had were somehow my fault because so many failed interactions ended up with others telling me I was to blame. I felt inept, ashamed, unlovable, rejected, and I was always anxious worrying about what I might do to make somebody else mad without knowing why or how it happened.

I Was absolutely shocked when I finally recognized that due to my autism I had very few skills and tools to use which others rely on to succeed in life.
But it was not my fault. I had something different in my neurology which did not allow me to see the world or anything that happened in my life the way most people would see and understand it. No wonder my world was filled with pain, failure, rejection and abuse! Nobody knew! What a relief to finally understand why.

The overwhelming relief that came with this revelation has not faded. I am so grateful to know I am autistic because it explains so much about my past and my painful life.

After diagnosis people tend to feel relief, but they also can feel dismay, anger, sadness for what might have been, and a whole lot of mixed emotions come up and need to be dealt with.
This seems to be a common experience among the newly diagnosed older folks. It is as though the experiences of our life until this point finally make sense, and so many of our beliefs about ourselves and others are shifted, sifted, sorted, and at long last understood from a different point of view. Knowing about our autism shakes us to the core and we must re-build all of our ideas to incorporate our new understanding into the way we see our past, our present, and our future.
Since we are older, we have a lot more sorting and shuffling and examining of old issues to deal with. We have so much more experience! This is naturally going to take time and a lot of emotional homework!
It seems to be common to feel confused, angry, sad, upset, and more, sometimes all at once as we work through our past experiences and beliefs and find ways to fit it all together from an autistic point of view. You will probably grieve for the poor little kid who was so misunderstand and often abused. Nobody knew! You will probably be angry at the bullies, tormenters, punishers and mockers in your past life. Nobody knew. You may grow in understanding about how autism had its part in these misunderstandings. Take your time and sort through it all. It is safe now to look back and to begin to find out how most things that happened to you had a connection to autism.
Give yourself time. I am learning every day all of the ways that my autism affected my life, and the ways it still works in my every day experiences. I am in my 3rd year of understanding, with many things yet to deal with. With new understanding comes peace and learning new ways to do things, to take care of my once lost self and to forgive myself for not knowing it was autism. I can forgive the others who didn’t understand too, for the most part. That brings peace instead of anger and pain. Understanding calms many fears and has begun to give me relief from much of the anxiety and despair and depression of the days pre- diagnosis. Things do seem to get better for most of us once we understand about autism. Our struggles are the same but our new understanding gives us tools we didn’t know we had to help us cope and find new ways to live.
I have felt upset and unsettled for days as I worked through certain memories, experiences, and feelings from the past. That’s OK, there is a lot to work through, isn’t there?
The nice thing is that things that had bothered me from the past, which I had taken out of my memories and re-worked over and over for years re-living the pains and trying to understand: these have mostly gone away and are now quiet in my mind and soul, once I saw how autism had a part in that particular incident.
I say this after 3 years of reading, study, and self analysis. It has taken lots of time.
I am only now becoming comfortable with the idea that I am autistic and understanding how much it has always affected my life. I am sure I will continue to learn more for years.

Learning how I struggled, what skills and weaknesses I had within my neurology has helped tremendously. One of the great hallmarks of autism is uneven neurological development. Do you know which sensory input you find most effective and which are your weakest skills?
I learned that I have very little capability to understand visual input. Movies, demonstrations, videos, and the like leave me with very little. I can’t process visual things. Can you? Many autistic people find that visual processing and visualization are among their strongest abilities. Those people use Movies, TV, videos, and demonstrations easily and benefit strongly from using them.
I read and can look at diagrams, charts, and maps. Can you?
Others are sound oriented and must listen and relate to things through their hearing.
I am very bad at processing the spoken word, but I enjoy instrumental music greatly and try to make that part of my every day life. Spoken word processing in me is almost nil, but in many people it is the strongest skill. These folks rely on audio books, Radio podcasts, lectures, and other spoken media as the best way to connect with their world.
These are just a few examples of possibilities for strengths and weaknesses. If you have never given much thought about how you connect with your world, I believe you will find it helpful to explore your own strengths and weaknesses so that you can help yourself succeed.

Self accommodation for your strengths and weaknesses will be evident. Once you recognize your need for quiet for self calming, your need for stimulation through exercise or sports or dance, your need for certain kinds of music, or how much it helps you to wear sunglasses in places where you will be exposed to bright or flashing/sparkling lights, etc, you can see how this self knowledge helps us make adjustments to our every day living arrangements, travel arrangements, etc. Autistic forums are full of insights and helpful suggestions for new ways to deal with autistic processing struggles.

Sorting out communication struggles is more difficult because we have learned so many ways to cope with our struggles, developed such ingrained patterns of behavior and responses.
I think it would be great if all of us as newly diagnosed autistic people could get a life coach or therapist who could help us figure out new ways to deal with our new self understanding and all of the mixed and hidden emotions and behaviors we learned to protect ourselves and to cope with our confusing and painful world.

Overcoming years and years of ideas that might now be changing due to understanding oneself and one’s autism will take time and patience.
Most of all, forgive yourself and take care of yourself. You may have learned from others that you are useless, worthless, stupid, etc as a child and lived a life believing what others told you. Knowing about your autism should put all of that to rest. It took years of adapting and adjusting to survive, it may take a good bit of time to undo all those ideas from long ago and a to put them in perspective using autism as the light which allows you to see your story more clearly now.

I joined a couple of on line forums for autistic people and spent a lot of time asking questions and getting great information. There are years of experience and insight in these forums, and it is all available at home right there on your computer. It took me several tries to find groups which were compatible. Many groups are made up of parents or young people, who tend to have different issues and struggles and different ways of communicating. Don’t be discouraged, there are autism forums out there of every sort, something for everyone. Keep trying until you find a group you are comfortable with!


I got therapy long before I knew about my autism to teach me better and healthier communication patterns and to help me make better and healthier decisions. What is obvious to many people who are neurotypical (NT) ( average not autistic persons) often needs to be explained to autistic persons. Getting therapy was scary but it was the best thing I ever did… It probably saved my life and sanity. I did not know I had options to choose in my behavior because my autistic inflexibility did not let me see it. I had to be taught. I urge you to find somebody to help you understand your options if you feel at a dead end or like you can’t go on. We may have many healthy alternatives that are hidden behind autism and the way it works in our minds.

Keep in mind that you are not alone! There are over a million undiagnosed autistic adults over age 65 in the USA alone. More of us are learning of our autism and gaining strength and insights every day. I hope we can reach others who are still lost in the older generations, I feel hopeful, knowing how much diagnosis has meant to me.

Finally a diagnosis!

Why is diagnosis important?



In conversation on a forum today we discussed the difference our lives before and after
diagnosis.

I said “learning about your autism is like reading your own biography but with the lights turned on instead of trying to see and understand the pages in the dark. ” I was so pleased with that analogy I thought I would share it here.