Why am I questioning my diagnosis?
Imposter syndrome is common among recently diagnosed folks, as well as those who are first beginning to recognize their struggles might be based in their neurology. They wonder if they fit the criteria for diagnosis, they wonder if there must be a mistake, if the doctor is competent, if they deliberately hid or exaggerated their struggles or answered test questions correctly , completely, or misunderstood context /meaning of certain test processes, directions. We have so many questions! Once we get diagnosis, we often wonder, “can this be right”? “is this true?”
–
Seeing ourselves and our lives from this new perspective alters absolutely everything we thought we knew, understood, believed, thought and gives us answers to a lifetime of “whys”.
–
It is usually a relief to learn that everything, every struggle, every failure in our lives was not “all my fault” but instead a sign of having a different neurology which causes struggles “average” or “normal” individuals simply do not have.
–
Along with this, we carry blame and shame and lots of scolding and punishment for “failure to perform as expected”. We could have done it if we had tried harder, we were being lazy, deliberately rude and cruel, we were shameful and bad people because we could not/(would not) do what was expected of us in so many situations growing up and all through our adult lives. We were shunned, mocked, bullied, shamed, blamed, often punished, sometimes brutally, for our failure to perform as expected.
–
We have had those ideas thrown at us and pounded into us (metaphorically or even physically) since we were infants. We have struggled and tried so hard and nobody believed that this was true. Suddenly understanding that we were right all along, that life has been difficult, painful, and that we have struggled and tried so hard in so many ways over a lifetime is usually a shock. We know it, but to have these struggles finally confirmed by others is like culture shock. We see everything differently. It is a lot to sort when we get to doing emotional homework and seeing almost every painful incident of the past in light of our diagnosis. It was not our fault, nobody knew, and so much was due to misunderstanding and skewed neurological performances…. it was ASD (and our other co diagnoses sometimes too) working behind the scenes.
–
Nobody Knew!!!!
WE re live so many painful events of the past, suddenly see “why” we struggle socially, “why” we can’t seem to do so many things that others appear to do with ease.
There are years of accumulated events we must look at and understand through this new lens of information.
–
I am here to explain that “imposter syndrome” is part of the processing of all this new insight.
WE try on the new definition, look through newly informed eyes at different parts of painful struggles of the past. Suddenly we may understand “what happened” and get one of those wonderful “aha” moments when a bit of information clicks and we suddenly “get it”. What a relief!
–
Expect emotional storms, learn all you can. Ask questions in reliable places such as autism forums where there are lifetimes of experience to explain, inform, suggest, and support as you begin this new part of your life and find understanding of yourself, your lifetime, your neurology, your gifts and your struggles. There are many great resources today in the form of books, blogs, podcasts, scientific studies, autism online pages, forums, videos in various places all around the internet.
–
Expect the sorting process to take time, do your best self care as you work through it, emotional storms will be less if you are healthy, fed, hydrated, and rested. You will have more resources to draw from when the going gets tough.
Its OK to feel every emotion as you work through it all, likely you will experience grief, sadness, anger, resentment, feelings of helplessness, unworthiness, relief, excitement , intense interest and the insatiable desire to learn as much as you can about your own neurology and how ASD applies to yourself.
–
If you have formal diagnosis, try to get your evaluation summary in writing. It outlines your worst struggles and best strengths and can be very useful for self-accommodations going forward.
–
Welcome to the new world your diagnosis /self identification opens up to you, welcome to self understanding and better understanding of all the “whys” of a lifetime.
–
As you make self care and self accommodation a priority, your life is going to get easier and better in many small steps.
Best of all, diagnosis taught me I was not the “only one” but that there are many others “out there” who understand. We are not alone.
Tag: autism diagnosis
Autism diagnosis anniversary
Coming up soon
For me, diagnosis changed my life enough that I remember the date and circumstances around my diagnosis clearly and I celebrate it each year. At the end of this month ( September 2025) I will celebrate my 6th autistic anniversary.
Knowing about my autism has changed my life for the better. Self understanding was something I had missed completely all those years before and it has taken emotional homework to sort and understand so many things from the past.
I am still learning about my own neurology and still trying to find ways to adjust my life to make struggles easier.
It has been hard to accept that I really am impaired in “normal” every day activities by my neurology. I find myself facing grief off and on when I struggle with some aspect of daily living where autism causes misunderstanding or makes it difficult to do something others do with ease. Todays news and strife adds to the emotional pain and like everybody else I feel particularly helpless, vulnerable, afraid of what lies in the future.
I try to remember to do my best self care, not to feed myself on social media’s shock and fright tactics (such things raise viewership and media does not hesitate to feast on horror, fear, distress, etc all over the world to gain customers).
I am trying to keep my life balanced and put myself on a diet of doing things that I can control, things I can do in my own little sphere to make my world better. In order to do this I must accept that I can’t control much, that I am not helping anybody by becoming dysfunctional through distress and anxiety induced by the feeding of my fears through social media/the news/ etc.
I can keep informed with just a few minutes of reading daily, I will no doubt be informed if the world is ending and somebody will tell me what to do (as if we could do much in that scenario).
I have been reading a lot of history over this past summer and have come to recognize that this sort of thing goes on in every generation. There is always a battle of “sides” of understanding… it seems to be human nature. There is always violence, mayhem, killings, sick behavior by individuals, just as there are always others who struggle to do good.
That all seems to be part of human nature.
I can look back in my own life, and I can look into the stars in the night sky and see how insignificant my own personal struggles are in the scheme of the world.
Very few humans are recognized beyond their own lifetimes, the rest of us experience life and all our struggles in different ways and pass on without fanfare in the world scope of things.
Do what matters most to your own life, your own loved ones, your own little place in your group, your community, your personal sphere…. you can safely leave the rest of it to history and world processes that will go on forever.
Thoughts on my own progress/process. It has been almost 10 years since I first began to suspect I might be autistic. It has been since 2017 that I began to try to learn more. I got diagnosis almost 6 years ago and began this blog in 2019. I find I am in a different position now and I have less information to share. Today’s science has uncovered many things and has clues to so much more but it is very slow going. Current trends in politics are very concerning and I am watching with strong interest. People who believe in science and finding and documenting facts are working continually for better understanding and I think funding will continue to be available from those who are financially able and who are concerned. Beyond that it is not within my sphere of control and I must rely on others who have the powers I don’t.
“accept the things you can’t change, change the things you can, and find the wisdom to know the difference” is something I am trying to live by. Learning what we can control and what we can not seems to be a key to mental health as we all struggle with conditions in the world today.
Find ways to give yourself what you need, what your loved ones need, what is good and right for you and yours. The rest is just details.
After Autism Diagnosis
when your diagnosis says “autism”
After the diagnosis process we must adjust to the idea that we have ‘different” neurology which can give us struggles that most adults in the world’s population simply do not have.
–
The idea that we were affected all our lives and that we did not know or understand is something that takes a lot of emotional homework and self education as well as eventually calling for self -accommodations. Suddenly seeing everything in our lives, our self understanding, understanding of others, our ideas, thoughts, beliefs over absolutely everything in our lives right up to this minute is stunning. Its an entirely new perspective and so many things look so different once we know our diagnosis.
–
Diagnosis is like culture shock, even if we expected it, and this new perspective takes a lot of sorting! Many people report upsets in the days of processing this new view of life both past and present : sudden anger, resentment, grief, relief, “aha” moments of sudden insights where so many “whys” of the past are answered by the word “autism” and the new understanding it brings us. Of course we are shaken to our core!
–
Do your best self care right now, you are going through sudden emotional whirlwinds, changing and growing with all the new insights, you will likely begin to make self accommodations as you discover yourself struggling with yet another part of your daily life.
you will need time, need rest and food and drink,to have the emotional and physical resources we need, we eventually apply self compassion and self forgiveness as well as forgiving others. Nobody knew!
–
Best of all you will discover you are not the “only one” and that everything and every struggle was not “all your fault” due to moral failures or lack of strength of character or many other traits others assigned you over your previous life. We struggled to do so many things in daily life that others did naturally and unconsciously. We are survivors in so many ways!
–
Learn all you can about your diagnosis. There are so many recent books, podcasts, videos, social media, blogs, personal pages, and autism groups you can join online as well as “in person ” in many places. I find the online groups wonderful. Where else can we get so many insights, so much information, suggestions and explanations from others who have lifetimes of Autism experience???
–
As you get insights about your personal struggles, you can begin to change things about your routines, clothing, arrangements, activities, and make adjustments or find “work arounds” to almost any struggles to make your life easier every day.
–
Eventually the whirlwinds settle , now 5 years since my diagnosis at age 68 life has never been better. I hope this for you as well.
After Autism Diagnosis
( or did they tell you that you are not, after all, autistic?)
So many adults finally find a professional who is willing to do an assessment and go eagerly to find out if they are indeed autistic. Many wonder if they will be told they are autistic, that they are not, or that they are “something else” instead.
My first attempt at diagnosis I was labeled with 5 other serious diagnoses to explain my test results , and was mocked, ridiculed, and scolded… I had a family, married with children, had worked jobs. Autistic people did none of those things! It was obvious immediately that this doctor ( a neuro psychologist) had not updated his knowledge of autism since his original college classes back in the early 1980s. Although his staff had told me he had plenty of experience with diagnosing autism in adults and with adult women, he told me at the evaluation summary “autism just doesn’t come into it” and that he had never diagnosed a single adult with autism in his career. This spanned about 40 years of doing neuropsychiatric evaluations, up to 350 per year and he told me he had a couple thousand patients under his supervision. Statistically 2 to 3 percent of those individuals were likely autistic but he never saw one!
I can’t stress how important it is to find somebody who has actually had a lot of experience with diagnosing and working with autistic adults. If I had insisted on talking to the doctor and asking how many autistic individuals he had diagnosed over the years, this whole failed attempt at diagnosis would not have happened.
The experience of “missed” or “mis” diagnosis is quite common among adults seeking to learn more about their own neurology and to find out if they are autistic (here in the USA, and likely many other places too, from reports I have read)
What has been interesting about this failed attempt was that the test results and written evaluation summary from this experience has been very useful for self understanding.
I took the test results with me to the second attempt at diagnosis with a very experienced autism specialist. He showed me in the test results how it showed very clearly that the doctor who did the testing simply was not familiar enough with today’s understanding of autism to recognize it and instead had given me labels he was familiar with.
The summary showed that I was highly gifted in a few areas, adequate in a few and abysmally poor in performance in other sections of the testing. In other words my performance had peaks and valleys, showing clearly my uneven neurological development. Charts of average/neurotypical people generally are similar in levels of performance throughout the test sections, sort of little hills instead of the very sharp contrast of performances in different part.
So I got my diagnosis from somebody who actually understood my autism, but that first neuropsychological test report revealed many strengths and weaknesses of my autism and my neurology.
I have been able to use the results for better self understanding and for making self accommodations. Although it was very upsetting at the time, it has turned out to have been useful in several ways and I have referred to it repeatedly in the 5 years since.
Since this (misdiagnosis or missed diagnosis ) happens often among those adults seeking testing, I wanted to bring it up.
Don’t worry if the person doing the diagnosis says you are not autistic, there may still be very many ways the evaluation and summary can be useful going forward.
If their explanations answer your questions, maybe you really are “something else”.
If you are certain you are autistic and your assessor does not have understanding of today’s definition of autism, you can still use the test results to help yourself make adjustments to your life. You can continue to seek a competent and up to date evaluation from an autism specialist.
Finding a competent assessor for adults is a struggle today. That is why so many groups online and in person accept self identification of ASD.
More about diagnosis aftermath soon!
How to find Autism Diagnosis
AS an Older Adult
One of the perpetual questions asked on the pages and boards I participate in is “how do I find diagnosis”? Its not as easy as picking up the phone and making an appointment!
Self discovery is well accepted in autism forums and groups because most of us understand how difficult it is to find competent professional diagnosis today. Most professionals are not familiar with today’s scientific understanding of autism. The majority of psychiatrists and psychologists, neurologists and neuro psychologists have not kept themselves up to date on autism as we know it today. In truth, most are very inexperienced with autism and if they have a general practice that covers all of the population, it is likely that they will only run into autism as 2 or 3 percent of their clients and likely that those autistic individuals will not be recognized unless they come with previous diagnosis.
The first thing we need to look for is a professional who is experienced with autism as a specialty. The second criteria is that they be experienced working with adults. Let me tell you that those folks are extremely rare today.
My first attempt at diagnosis ended up badly, I had asked the staff in the neuro psychologists appointment desk if Dr was familiar with autism and had worked with older adult women. “of course, he has years of experience”. BUT
When it came time for my diagnosis summary the Dr told me he had never diagnosed a single person with autism “it just doesn’t come into it”.
He ridiculed me and told me autistic people never marry, never work at a job, never have families or raise children. His idea of autism was rooted in his early education in the 1980s and he had not kept up with today’s understanding of what autism “is”. He gave me 5 other serious diagnoses to explain what he saw in me instead. It was emotionally devastating., but eventually I found the diagnosis summary and test results very useful in spite of the diagnoses he saddled me with. The tests were competent and accurate but his interpretation of them was from a different perspective with little familiarity of autism itself.
When I took the diagnosis summary and test results from that experience to the autism specialist I finally found almost 2 years later, he was able to point out that my test results showed my uneven neurological development perfectly. The first doctor simply had no idea of what to look for from the standpoint of today’s scientific understanding.
If you are looking for diagnosis in order to apply for government support (I’m speaking of the USA here, in other countries things may vary ) check with your state autism council to see what professionals are allowed to make diagnosis in order for you to qualify for state programs. Many states allow psychiatrists, psychologists, neuropsychologists to diagnose officially, others also allow social workers, neurologists, and others to do the examinations and diagnosis process. Some require only psychiatrist exams. Make sure you find out what your state accepts before searching for the professional who will do your exam.
Usually diagnosis will be billed for insurance as ” comprehensive psychological evaluation” and most insurance companies accept it as such. Check with your own insurance to see if ” comprehensive psychological evaluation” is covered. If the doctor you choose is “out of network” see if the insurance company will allow you to pay the bill yourself and submit it for reimbursement. The insurance company may be able to recommend an “in system” professional as well.
Do talk to the doctor who will be performing the diagnosis personally if at all possible, and ask them directly how many people they have diagnosed with autism. If I had done this, I would not have gone through the trauma of my first attempt and the ridicule and shaming that attended that experience. If the doctor you choose refuses to phone you back before you make the assessment appointment, they may be more interested in collecting their fees than they are in working with people to help them solve their problems.
Many people search long and hard using the internet, phone calls, emails, over a long period of time to find somebody who is competent to diagnose them.
One strategy that finally proved helpful for me was to contact autism societies of all sorts in my state and ask for information about finding diagnosis as an adult. Parents of autistic kids (in parenting groups!) may have got diagnosis themselves and may be willing to share the contact info for the person they saw. People who work in the office of autism support groups may be autistic or know somebody who got diagnosis as an adult and be willing to help you contact the diagnosing professional or give info that sets you on the right path. I contacted one of the autism societies in my home state and the person who answered the phone has a late adult diagnosis. She shared with me the contact info of the doctor who did her exam and gave her diagnosis. It turns out she was his first adult diagnosis as a young man with a growing practice. I turned out to be his last, so many years later.
=
Expect to spend a lot of time, likely also spend a lot of money-the professional you find may be far enough away that you must travel and even spend a night or two in a hotel or motel, etc to get through the testing process. Expect to have a long “wait time” before your appointment. Some professional offices I contacted had waiting lists of up to 3 years. There is much demand for diagnostic services, but few competent professionals available to fill that demand!
=
Some people have found diagnosis through teaching hospitals Psych. departments. Schools such as these often offer services by students who are under the guidance and support of professor/doctors . Many times fees are less than what is standard in private practices.
The struggle to find competent diagnosis in not only the USA but in other countries as well is one reason self recognition is so well accepted in groups of all sorts where Autistic folks gather to support each other.
If you know anybody who is just starting out with education, thinking of medicine and looking for a profession, please suggest that the demand for adult diagnosis is a specialty that is desperately needed. A person could live anywhere in the USA and be almost guaranteed of a living for life. No” on calls”, no weekends…
Once you have that precious appointment, you will want to know how things proceed, what the tests and interviews consist of, what they are looking for. Another post coming soon with info about the actual diagnosis process.
“
Autism for beginners
basic info all in one place
Somewhere around eight years ago I began to suspect I was likely autistic. I had learned about autism when television began discussing it on daytime talk shows my mother was watching back in the late 1960s and the 1970s. I was born in 1951.
I thought I knew what autism was and that autism did not apply to me. (In those years only the worst struggles of autism were recognized).
By 1980 when autism was being added to the DSM I was fully adult, recently divorced and getting long overdue therapy to help myself after a lifetime of emotional pain and bad decisions. Getting therapy was the single best thing I ever did for myself.
Flash forward to 35 years later. I was married with 2 adult children, I had worked with autistic people, one of my best friends had a child with autism who was always in and out of the house with the rest of our kids, In my last job I had worked among autistic kids in a group residential/therapy home 8 hours a day, 5 days a week. I retired after over 50 years of struggles with keeping jobs, being bullied in every one of them. I still thought I understood autism.
Then in 2012 0r 2013 :
I was watching a TV documentary with my adult daughter one evening ( something I never do on my own but she finds this activity companionable). The program was about autistic kids in high school in Great Britain. I began weeping, shaking and sobbing and saying
“it was like that, I was like that” repeatedly.
Understand I almost never cry! It was soul shaking and totally unexpected.
Daughter consoled me and said “maybe you are autistic, too, maybe you should check it out”.
************
I began to think that idea over but it was probably a year or two later when I began to actively search out information about adult autism. There was little information online or available in books, almost everything was aimed at parents with autistic kids. There were all sorts of claims about autism causes, cures, therapy, etc. and lots of mystic, magical thinking too. So confusing to sort it all out! I am a voracious reader and spent hours each day trying to learn all I could for better understanding. Today I still have a strong, fixed interest in autism and continue to search for new information daily.
I did find a couple of blogs and a couple of books but it was so very frustrating trying to get basic information as it related to adults, particularly to older adults, and as I became more certain I must be autistic, I decided it would be useful to others to find the relief I was finding by my self discovery. I am an information seeker and information sharer by nature.
I began to write a blog about my autism journey, my struggles to find diagnosis, to find self understanding, to find information and to learn more about autism itself.
I wanted to present as much basic information as I could in one place so that others struggling to find information and maybe awkward with doing searches or reading scientific studies, etc could get explanations and be assured that they were getting reliable information without being led down the multiple paths to “woo- woo” over unscientific understanding, miracle cures, speculation without documentation, fake therapies and so much more.
About 6 years ago I began this blog.
If you have read this far, please forgive me and understand I know very little about setting up a website, even making a simple blog. I know page numbers or an index would be a great help!
To read these pages in context and in order of posting, you must go to the bottom and read backwards. ( its a pain, I know, but I don’t know how to fix it!) I am not tech savvy, don’t have much $$ to invest, I am not making a profit or trying for one, I don’t ask for donations , I am not seeking “likes” for money or self gratification.
I am simply offering a story about what I have been discovering in my old age ( I am 73 as I type this on my old fashioned desktop keyboard). I hope it serves to provide basic information in one place and to encourage those elders who are suddenly suspecting they might be autistic and want to learn more. Diagnosis has been life changing!
I hope you find what you need. If not, let me know and I’ll try to find info about it and write another blog. I am happy to email with readers. My sensory processing differences do not let me do texting, phone calls, messaging, or other “real time” conversations effectively.
What you see here can all be documented and is known and proven scientific info.
I can give references if you want more information or to know I am not “making it up”.
I could have used some explanations and information very early in my life, but until I began to suspect my ASD in my mid 60s I didn’t have the least suspicion that my neurology was the answer responsible for so many painful “whys”, for so many failures where others thrived, so many awkward moments, so many misunderstandings.
What a relief to finally learn everything was not, after all, “all my fault” but that my different neurology was working behind the scenes in almost every painful incident of the past. Best of all I learned that there are others out there who can offer insights, explanations, information and understanding because they too have lived lives with ASD. Diagnosis can be life changing even in the very last parts of life.
Autism diagnosis Its OK
Its OK if others don’t believe in your diagnosis or accept it.
So, today let’s say I finally figured out “what is wrong with me”…….. I suddenly understood that I had different neurology, either through a sudden insight, long study, or professional diagnosis. I am autistic. I have always been autistic. It explains so many struggles of my past. I can suddenly understand a lifetime of “whys” by seeing how Autism had its workings behind the scenes and nobody knew! I am excited!
It is such a relief to finally understand that I am not wrong, or bad or morally weak or deliberately evil. My neurology has impaired my understanding in social situations, given me a tendency to misunderstand and miscommunicate, I may have other struggles, such as time management or organization skills that are not what have been expected of me. It is not my fault! My neurology has been to blame for my lifetime of struggles where others seem to thrive. What a relief!
I rush right off and tell my best friend, my family, my co workers and instead of being excited and happy for me, they scoff, saying “no you’re not”, “you can’t be autistic “because (a thousand reasons such as you don’t look or act autistic etc).
Oh, that was unexpected.
My mother does not believe I am autistic, says she would have known. My sister says I am trying to get attention for myself, my co workers say I am trying to escape my responsibilities and making excuses for lack of performance. Now suddenly I am devastated. They don’t accept my diagnosis, they don’t believe me! They think I am making it up, thinking I am doing this to cause trouble. Now what? How do I make them understand and accept my diagnosis???
Answer: I can’t, and I won’t even try.
Its OK for them to think whatever they want to think about my diagnosis.
———————————————————————————————
This experience is quite common among the most recently diagnosed individuals who want to share the exciting information they have just received.
I am here to tell you its OK if they scoff, if they misunderstand, if they disbelieve. Ignorance and stigma run deep. Its OK if they want to believe differently. You don’t have to explain, ask permission, educate, justify, or apologize.
The experience of becoming diagnosed may not change the way they think about you or the way they interact with you, or the way they expect you to behave, believe, think, perform, etc. . you may get acceptance and support but don’t expect that! Many people will want to cling to the old ways of interacting, their own beliefs and feelings of guilt, shame, misunderstanding may impede a healthy exchange of information. Its OK if they struggle with adjusting to or accepting your diagnosis too.
Diagnosis will mean a world of difference to you but to them, not much will change and they will mostly be unwilling to change to help make your life easier and better. That is human nature. Change can be scary for anybody.
They may even make remarks saying things were better, easier, happier, etc. before your diagnosis.
Well, for them maybe that is true, but their opinion is their business.
It is not our job to change ourselves or our own self understanding or our ways of self support and accommodation to suit their opinions.
Its OK if they don’t accept adjustments you make to your schedules and activities to remove the things that distress you the most, make you sick with anxiety, cause overwhelm and overload, or that are simply something that you have only been doing to please another person.
It is OK to give yourself your best self care, to dress the way that is comfortable for you, to use stims for self comfort, to choose something else besides the demands and expectations others have for what they want of you at any time.
Its OK to have your own agenda, your own enjoyment, your own independent life, free of their opinions and their pressure to conform to their demands, their anger, their manipulation, abuse, shame and blame.
Knowing about our autism sets us free to see ourselves not as losers, broken and incompetent, aggravating, infuriating, impediments to other’s lives, etc. After what may have been a lifetime of failed expectations of others we can finally be free to be ourselves in our own way at our own pace and in our own style.
Its OK if they accept and support your diagnosis as they see you making progress and finding life better and healthier as you learn more about your neurology and put adjustments for self accommodation into place. This may happen in many cases. Its Ok if they never do understand.
You do not have to have any other person’s approval or acceptance or permission to find self understanding and find a healthier way to live your own life.
Its OK to be who you are in the best way you can going forward as you sort it all out and make adjustments to make every day life easier and better for yourself..
What is behind the increase in Autism Diagnosis?
Today’s understanding of autism means more are being diagnosed.
I have been reading the news! Headlines report a huge and alarming increase in the occurrence (diagnosis) of autism. Statistics are quoted, speculation abounds, as in many other facets of experience with autism, politics swing, sway, hold court, agitate, educate, and exacerbate opinions and fears. We can see the work of the press, pharmaceutical advertising, faction groups, appearance of pop culture heroes with opinions all over the internet in articles, videos, podcasts, sub -culture groups, and videos, popular social forums and sites where many people now obtain their news.
Here is the thing. Although statistics from previous record keeping show increase of autism by leaps and bounds, record keeping and definition and understanding of the nature of autism as well as guidelines for diagnosis has changed dramatically over the years.
When Autism was first discovered, documented, and began to be an official medical/psychiatric diagnosis, it was not well understood.
Official diagnosis began around 1980. It was a huge relief to have a few explanations or definitions for so many severely impaired individuals struggling in institutions and care homes.
Autism was at first diagnosed only in people who today would be called “profoundly autistic”.
Autism is still the “new kid on the block” as far as scientific understanding goes. The very first person diagnosed officially as autistic only recently passed away.
During that time much has changed, from recognizing signs of autism to the way it is understood.
Instead of a behavioral disorder, where focus was on changing the problematic behavior of autistic individuals, we know today (through scientific research and huge gains in the tools we use to analyze and discover genetics, neurology, biology, the brain, behavior, etc. )
that autism is caused by uneven development of our neurology long before we are even born.
It is primarily genetic in nature, is not due to trauma, pollution, medications, foods, brain damage, vaccinations, or evil spirits.
Autism is not caused by exposure to things after we are born, not caused by injuries or diseases, we are born with autism and we die with it.
Other conditions may closely mimic autism and with no defining feature common to each and every autistic individual, some who have had brain inflammation, trauma, or other physical or chemical causes for their neurological struggles may end up with autism diagnosis. Science and understanding are always “works in progress”
Autism has been present in the population for generations even before it was named. In my own family, it seems autism has been present since at least 1859 when my great- great- grandmother was born. She spent the last 15 years of her life in an institution and there are letters and other papers to document her unusual behavior and “strangeness”.
In literature and philosophy and general social culture, autistic people were ‘fools,” “idiots”, “simpletons”, often even then classified by lowest possible social standing.
In the 1980s it was believed that autistic individuals had no empathy, would never marry, would have no friends or relationships, never hold a job, and must be trained like animals to function at all.
( read a complete history of autism including the changing theories and definitions of autism as science and medicine has advanced – I have written articles on autism history near the beginning of this blog if you want a compact version)
Today we know people like me can be autistic, too. I am married, have a family, read and write and have been gainfully employed. The understanding of autism and the parameters which define it have undergone a massive evolution. Statistics available tell so little of the actual story of Autism and are grossly misleading when cited and quoted without context, definitions, or explanations.
People speculate that some of the most brilliant individuals in history may also have been autistic, but that “branch” of Autism was not understood “back when”.
My mother (born in 1929) was called a “simpleton” by her parents and siblings. When I got my own autism diagnosis at age 68, long after she had passed away, it was easy to recognize that my mother and probably her mother too, were autistic, as was the before mentioned great great grandmother.
In each generation of that family line, there were suicides of young women up to age 30 and of men 50 and over for as far as I can trace that family line ( late 1700s).
I suspect this also shows autism runs in this family line, although when those people lived nobody knew about autism. Suicide rates are up to 8x higher in the autistic population as compared to the general population.
Today there is still no defining single test to determine diagnosis of Autism. Science is still avidly looking for one! Nobody can say “for sure” an individual is autistic through dna, blood, or other tests, and there is no physical “look of autism” to give clues.
The only thing every single autistic person has in common is that their uneven neurological development is discernable and definable in many ways. What neurological struggles we have are different for each of us depending on how our neurology “develops” before we are born.
Descriptions used to diagnose autism today are extremely different from the descriptions used in the 1980s.
Today’s media or other people examine the medical statistics which quote the huge rise in numbers of the diagnosis of autism, but there is little understanding that it is because autism is being recognized more frequently, the parameters used for diagnosis have been widened, narrowed, redefined by science repeatedly. This is bound to continue as understanding continues to grow.
It is not because the actual frequency of autism has increased.
Society, science, and medicine are forming new understanding of autism and the statistics are reflecting this.
Keep an open mind and remember that what makes good headlines and sells news is shock, fear, anxiety, scare and horror. Who benefits by this sort of reporting of statistics with no actual understanding of autism, its history, or its changing definitions? Follow the money.
“Autism for profit” is a big deal these days, watch what you use as your source of information, find more than one source if at all possible, look for the motives, the movement of money, the politics, and explore the science and the history of what is reported with such shock and fear headlines to find the “real story” behind them.
Disclosure of Autism Diagnosis?
Now you know you are autistic, should you tell others?
Disclosure of an autism diagnosis is a very personal thing. Be aware first that there is no such thing as “keeping it a secret”. If you tell one person, they may feel free to talk about your diagnosis with others, especially among family members or friends.
People choose not to disclose their autism if they feel it may bring on discrimination, stigma, or somehow affect social or professional standing.
Stigma is real, many people today do not understand what Autism Is and discriminate and make judgments automatically.
Some may want to avoid stigma and “instant judgement” that comes with what amounts to yet another label. That is certainly understandable.
Certain employers or individuals we meet may change the way they treat us because of our autism diagnosis. This may be true of family members or friends, too.
Others choose to disclose their diagnosis to obtain support on the job through accommodations, or to obtain government financial support or access through certain programs available to the handicapped.
Some, like me, disclose my autism because I write about what its like to be an old autistic individual in today’s society. Saying “I believe I am autistic, let me tell you about it” does not have the “authenticity” or “authority” that telling people I was diagnosed at this late age (68 at diagnosis, now in 2024 almost 73 years of age) and explain the experience and insights I have gained after diagnosis.
Disclosure for others may be a way of letting family and friends know that everything all those years ago was not, after all, all your fault, but that you have an actual neurological condition which causes you struggles you never suspected for most of your life. Disclosing diagnosis explains to others your quirks, your brilliance, your odd little things that seemed until now inexplicable to others.
Expect reactions to vary in each individual. You might be surprised at who is accepting and supportive, and who scoffs or mocks or refuses to learn about it all.
Be aware that once you do disclose, there is not putting the rabbit back in the hat. That news is out there and even if you refuse to discuss your diagnosis, others will! ( often behind your back). (but maybe they do that anyways).
There is no right or wrong decision, everything depends on what is right for you. Think it through thoroughly, don’t expect any person you tell to actually “keep it a secret”.
Do what is right for you.
Recently Diagnosed adults
Autism diagnosis throws everything into a different perspective
As well a writing the blog, I also attend online forums and even am administrator of an information sharing group and a moderator for a couple of social support groups.
Many of the recently diagnosed adults who report their diagnosis for the first time follow up with an emotional response. I am so angry I missed so much because nobody noticed, I am so sad for all the things I lost because I am autistic, I am furious with my parents, teachers, doctors, or others because they dismissed my struggles.
I am so sad, so angry, so frustrated, so relieved, so validated.
Getting a diagnosis of autism after a long life time of struggles in so many ways can be all of these things. Almost all of us go through whirlwinds of emotions as we begin to adjust to the vast and important life change our diagnosis means for us. We suddenly have answers for so many of our struggles, from social failures, problems on the job or in the home, difficulties with perception, balance and motion, problems understanding things that go on around us and have gone on all of our lives. Now with our new understanding that it has been our uneven neurological development that has played havoc with our lives all this time (and nobody knew!) we can forgive ourselves for our failing to live up to others’ expectations. Blame and shame surrounding our performance ( or non-performance) in almost all parts of our lives has led us to feeling guilty, believing we are somehow bad people and that we are failures due to lack of character, inner strength, willpower, laziness, ineptitude, stupidity or moral failure.
Finally, we can see how our unevenly developed neurology has given us struggles that “normal” (neurotypical ) people simply don’t have.
We can understand why we were blamed, punished, shamed, bullied, etc. Nobody knew!
We can finally forgive ourselves for all those struggles and years of disappointing results. It was not “all our fault” after all. Now we know WHY!!!!
Don’t be surprised if you feel completely at odds within yourself. It is going to take a while to look at just everything in your past and in everything around your every day life today and see how autism has had its workings in it all, even though we may never have suspected.
Its likely pretty normal to have these emotional responses. Our world has been turned completely upside down and now we suddenly have this new perspective that shows us things we may never have understood before. Of course it is unsettling!
Do your very best self care as you begin the journey to your new life with this new understanding.
You will have loads of questions, old memories seen in new ways, and you will begin learning new ways to live your life using new every day tools in thought processes, behavior, self accommodation and more.
I promise you things will start settling down as you find your way little by little and begin to experience those marvelous “aha” moments when something confusing, painful, frustrating, exciting suddenly makes sense.
You are definitely not alone.
More and more older adults are finding diagnosis and changing their lives for the better as they go forward after recent diagnosis of autism.
OldLady With Autism 