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?”
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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”.
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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.
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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.
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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.
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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.
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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!
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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.
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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.
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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.
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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.
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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: Newly diagnosed autism
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.
OldLady With Autism 