This is the first part in a two-part interview with the blogger known as ‘Old Lady With Autism.’ ‘Old Lady With Autism’ is on a mission to advocate for late-diagnosed individuals on the spectrum as well as autistic elderly who may not have received a diagnosis. She self-diagnosed with autism a year ago and is currently in the process of receiving a formal diagnosis. She says discovering her autism diagnosis (as well as her mother’s) has helped her make sense of her life and realize a critical need for autism awareness and understanding among the caregivers of the elderly. This week she offered a unique perspective into the difficulties of growing up on the spectrum, especially without an understanding of why she was perceiving the world so differently. She also explains why obtaining an official autism diagnosis is so important, even in her sixties.
What are some of the most prominent memories which made more sense when you finally understood you were autistic?
I compare the realization of my autism to having “the lights go on.” Suddenly everything in my past was cast in a new light. Every scene of my being “disciplined,” chastised, corrected, and scolded came into different perspective. Every argument with siblings and other family members, so many misunderstandings, so much confusion and despair all became not only comprehensible, but also forgivable. Every attempt at friendship, failed relationships, all the bullying in school and at work, how come I always angered people without the intent to do so…those things all became comprehensible. It all made sense!
Nobody knew about my autism. We were all “in the dark.”
As a complication, or a compounding factor, it also became evident that my mother was deeply autistic, and of course none of us had known that, either. I remember my sister asking me at one time, “What is wrong with mom?” The thought had never entered my head before that… she was just mom. We puzzled for years, finally deciding that a specific early life trauma had caused her to stop maturing at the age the trauma occurred. She was in 7th grade.
Perhaps part of that was true. But now I am sure my mother was also autistic. My memories of mom’s behavioral/personality traits click perfectly with an autism diagnosis.
Double whammy, lots to absorb and process.
But my overall feeling was one of elation and relief. I finally was able to understand “what was wrong” for all those years!
I could forgive myself for not meeting their expectations, for doing all the things I had done out of fear, frustration, angst, anxiety, emotional pain, and misunderstanding.
I could forgive myself, and also, where I had avoided all of them because of the pain and anxieties of the past, I could also forgive them. (“Them” being all the others with whom I had not had successful interactions of any sort, including family, my former spouse, in laws, employers and co-workers, and all the people at school and work who I had upset or who had bullied me).
Understanding at my age (then 66) and forgiving have been so healing and helpful! My anxiety levels have gone down, my depression is mostly under control, I have a deep peace in my heart now that was missing before. I know I am autistic! There WAS a reason for my miserable early childhood and my miserable young adulthood. I can forgive myself and others for mistakes and let the issues I worked, worried, and re-worked endlessly in my mind and heart rest now.
It was not my fault. It was not their fault. It was autism.
Why is it important to you to have a diagnosis of autism in your late 60’s?
I have two responses to that. My self self diagnosis came about after a year and a half of intensive study and research. When I was fairly sure of my autism, I joined several groups of exclusively autistic members and spent time asking questions, reading opinions, and getting and giving advice. I was completely ‘immersed’ in autism, and it helped me understand how deeply autism had indeed affected my life, from infancy onward to today.
I am quite sure within myself that nothing else answers all my questions surrounding my early life. It explains the struggles, the miscommunications, the anger, the hurt, the continual and perpetual confusion, anxiety, and despair I experienced as a result of never understanding what was happening, how I was expected to respond, and how to avoid the anger, frustration, punishment, hounding, bullying, and relentless inescapable failure I felt inside. No other explanation so completely fills in the blanks which were mysteries to me for all those years.
I want other “older” undiagnosed autistic people who are no doubt suffering deep frustration, emotional pain, continual self doubt, and isolation to find out the freedom and peace of mind that comes with understanding their troubles were not caused by their inferiority of morals, values, self determination or drive, laziness, selfishness, cold-heartedness, or other labels they were given early on. It explains all of what happened when you know about autism. You are not bad! It is not YOUR personal traits that are at fault! It is not a matter of lack of character, but a matter of not having the same tools available or the natural insights given to Neurotypical people. It is a neurological condition which is no more our fault than is diabetes, cancer, thyroid, epilepsy, etc.
That knowing, (about autism), that throwing the light on struggles which are nearly incomprehensible or unexplainable by any other means…that one little word, Autism, is the key.
I hope that I can help open people’s eyes to autism in the elderly population and to try to give sufferers the peace I have finally found at this time toward the end of my life. Getting an OFFICIAL diagnosis is important to me only because I do want to be an advocate to bring attention to the plight of undiagnosed elder autistic people. It is almost unheard of in the USA for older adults to be diagnosed, and there are very few doctors with any practice at making those diagnoses.
I wrote in my blog (and am still writing) about the struggle to obtain a medical/official diagnosis. Without it, I don’t think I will have credibility with the public…I cannot say, ” I think I am autistic, and I want to tell you about it, and here’s how to find and help undiagnosed elderly adults”….nope, eye rolls at best, right? But if I say I am a woman who was officially diagnosed at age 67, and I can tell you a few things about autism, well, depending on what you think autism is, you might roll your eyes, or you might take a minute and listen… I will be “official.” I will have that bit of paper that gives credibility or confirmation.
If I should ( Heaven forbid) ever need accommodations or special help because of my struggles with autism, say in a nursing home or with an in- home caregiver, I am much more likely to get help with official documentation showing I am well and truly diagnosed.
There is validation in an ‘official’ diagnosis, that is not in a claim of self diagnosis. I think most people who self diagnose do so after intensive research and trying to learn as much about the condition(s) as possible, and do not immediately dismiss a person who makes the claim of autism without the ‘papers’ to prove it. But I see the need, if I am to make this advocacy for older adult diagnosis/awareness possible, I will need as much credibility as I can get.
So, I need the diagnosis to understand myself and my former life, but staying ‘unofficial’ may have been just fine for me: except that I want to do something to reach out beyond myself and some of those “others” require more than “my word” that I am autistic. That certificate from a medical entity is kind of like a driver’s license, or a diploma… it shows to others that you are what you claim you are (able to drive a car, educated to a certain level, autistic, etc). It can open the door to getting help for disability, and special accommodations or supports to be put in place through certain agencies or entities.
My main goal at the moment is to get the “official” form of diagnosis. Then I can approach senior centers, mental health agencies, nursing homes, hospitals, police departments, fire departments, senior help agencies, etc. and try to open people’s eyes to a hidden population which struggles in society and who these entities are more likely to see (undiagnosed elder autistic people) in a professional capacity.
How is autism disabling for you?
Really tough to answer. Stressful and a bit painful as a certain amount of mourning the loss of “normal function” is involved, and I am still working on understanding how much my autism interferes with what is considered “normal” in all levels of my past and present life. I am probably in denial about some of my ‘less than average abilities’ in many areas.
I am still learning all the ways that autism affected/still affects my understanding of the world, my thinking and learning processes, my social interactions, my ability to work, to parent, to be a spouse or a friend, my perceptions, my behavior, my emotions, truly every aspect of my life.
As a child, my major problem was trying to sort out what was expected of me at any given time.
I was very fearful and anxious, never knowing when I would be punished for transgressions and often not understanding why I was being punished. I could not figure out which rules applied under which circumstances. This is still a struggle, though it is far less since I have more autonomy.
I watched and followed the crowd at elementary school. I did what they did when they did it..only a few moments later, as I was able to figure out what was happening. Lie on your mat, go to recess, go to the bathroom, look at books, listen to the teacher.
Listening and following instructions was very difficult because it has been a challenge to hear instructions when your neighbor is talking or poking you in the back. It is hard to sort out instructions from the sound of the fan, the heating elements, the fluorescent tubes humming, the buzz of the loudspeaker on the wall, the ticking of the clock, the turning of pages, shuffling and snuffling, tapping, sneezing, coughing, clearing throats, and scratching of 30 other warm and restless bodies in the room. Then the smells were there too, unclean sweaty little children, the fabric softener and perfumes, the chalk, the wax, the wood, the stinky shoes, the smell of the paper, paste, dirt, and the outdoors smells that wafted in through the open window.
Trying to watch (visual input) and listen to the teacher at the same time was virtually impossible, as senses were all tugging me in different directions. Flickering lights, sunshine moving to shadow, all the other kids wiggling in their seats and doing other interesting things, the motions the teacher used as she moved to the blackboard and how she wrote on it, chalk dust motes, playground noises outside, echoes of other classes going down the hallways or up and down stairs, bells ringing to announce lunch or other activities, having to change focus from your writing pad or booklet to the teacher and back… listening for instructions to turn the page or write something down and while doing those things being told to take another step. I was often left far behind and the teacher was impatient. I often got scolded to “pay attention.”
I still have a tough time with visual input. Depending on what I see, it can be very traumatic, and upsets me immediately (portrayals of aggression, violence, anger, distress). I do not watch tv or movies or videos on the screen, at the movies, or on the computer. I avoid still photos or images of such things. The horror lingers, and I seem unable to dispose of it by telling myself things such as “its only a movie” or “this happened long ago, it is not real now, they are no longer suffering.” I have a very hard time with hearing screaming, crying, begging, angry words, … sounds related to violent emotions upset me as much as the visual images. I seem to have no place to put these in my autistic filing system, so they remain, and the distress level stays for a very long time. Very stressful.
I cannot watch and listen at the same time and understand everything in front of me. Especially if there are other stimuli around (people in a viewing room, at the theater, outsides sounds, etc.).
I simply cannot process the input quickly enough to make the experience useful or enjoyable. It is a struggle!
Live demos or demos on tape leave me unenlightened for the same reasons. I can read explanations and use photographs or drawings to understand directions much more easily. I can hear quite well. Hearing testing reports say my range of hearing at both ends (high-pitched noises and low frequencies) is much better than average. But I do not process spoken input well because of the autism. My short-term memory may be deficient, and I may have to ask over and over…what am I supposed to be doing?
Classroom lectures were a complete waste of time unless I copied down verbatim every word the teacher spoke, and read it later. I found I did very well at school when I read the classroom chapters covered from the book. It seems my memory for words I read is much more competent than the memory for spoken or visual communications. I think this is because I process them more completely without outside interference. I am blessed to be lexic/ verbal/ and have strength of understanding words. My other ways to make sense of and communicate with the world are sorely lacking. If I have an autistic gift, it is the gift of words. My vocabulary and word comprehension test well above average.
I do love sounds, love mostly instrumental music, the sound of moving water in any form or variation, the sound of bells, chimes, fog and steam whistles, bird calls, and most drums. But these I use for pleasure and not as a means of connecting with my world. Loud noises or noises such as two radios tuned to different channels, or so called “background music” in crowded places make me wild to escape. Passing through the media sales area of any big box store is trauma of the first order.
Overwhelming input of any sort (unwanted touch, smells, feelings, sounds, especially if intense or mixed so I cannot sort them out) can put me into what I call “stampede” mode. Frantic, desperate, immediate need to escape.
Another huge disability caused by my autism is my lack of intuitive reading of other people. I am clueless as to their motivations, their feelings, their expectations, etc., and I miss cues which would be “picked up” by neurotypical folks in an instant.
I have for years been saying to people. “I need to be told, I don’t catch on to hints.” It is not that I don’t care what another person’s thoughts or feelings are, (I do care, sometimes desperately), but that I cannot ‘see’ when somebody is angry or likely to be, cannot anticipate that anything I say or do would affect another person emotionally…I cheerfully speak my idea or belief in a direct fashion to somebody, enrage or offend them, and simply do not notice that I do so in the process.
It is not intentional. I do not try to hurt people’s pride or dignity or self identity, but it seems I have done so in almost every relationship I ever had, from parents, siblings, schoolmates, friends, spouses, bosses….I can go through basic rote greetings and small social interactions in settings that are predictable. But let the role or script or setting change: there is no possible way for me to successfully ad lib. This lack of insight can also project itself into certain things I do…I may not see the consequences of certain choices I make in my behavior. I may not see how a thing I do will have an effect on somebody or something else. That “early warning system” is still lacking, though sad experience has taught me to be more careful and to try to attempt to see consequences before I choose to act. I have even been known to ask for advice before proceeding.
I think it is great that today’s autistic kids are having the “ins and outs” of social interactions explained to them. It would have helped me to understand the ‘basics’ rather than have to sort it out for myself. With practice and old age plus much negative feedback/experience, I think I am somewhat better at it than I was 30 years ago ( I am 67.).
Now that I know I am autistic, I am trying to learn more about that huge deficit of ability to navigate social interactions. Only a year after my self diagnosis, I am still working on gaining understanding of my autism and how it ‘helped me fail’ at so much social experience.
I am not at all sure that I can be any more successful in the future than my current level of cognition. If the experience is in any way varied or new, cognition and training is gone, and the structure of the situation I have been trained for is gone. In these (frequent) situations, I am at a complete loss. A neurotypical may be able to make the leap and see parallels of behavior choices that might apply to the new situation, but I am not able to do that. I don’t know if other autistics would be able to either; it probably varies, as in all things, according to the individual.
It takes a lot of time to act and react, interact in any social situation, and in situations I have not encountered before, I am terrified I will make more social mistakes, offend or anger people, or simply annoy them. Still happens at age 67. It will not change. I was not born equipped to be a politician or a diplomat. There is nothing savvy or subtle about my autistic approach to the world. I should also add that because I have to be vigilant and analytical in any social setting or interaction, that I don’t make a mistake, it is very anxiety producing and exhausting to do “social” things. Especially NEW social things.
More disabilities? Yes, I am sure there are many more. Take rigid thinking, for example. My mind thinks once it learns a fact, that fact is set in stone. A rule is a rule is a rule…inflexibility is a hallmark of autism.
I sought out facts as a child so I could use them as guideposts. It was perpetually confusing to learn that behavior and responses had alternatives. How could I choose which was appropriate, and when? I liked language and reading because there are few inconsistent rules once you understand the basics. Math is the same, 2+2 is usually 4…consistent facts are the meat and potatoes of my world. They help me navigate and understand.
“Why” is a very important word because it can give me the ability to understand the nature of the action or behavior required of me, or the ways of the world and its occupants and furnishings (people, animals, mother nature, man made things.. all of it). Nothing is more frustrating for me than to be told to do something and not understand why. Nothing can be more frightening than to be in a new social situation (this includes things like doctor appointments or places I have never been, any situation where I have to interact with anybody at all) and not understand what is supposed to happen, how, when, and why. Approaches terror.
Autistic inflexibility keeps me from easily finding alternative behaviors or solutions to personal problems. I had to get counseling (back before I knew I was autistic) to learn that all of my behavior had alternatives and that I could choose to behave in many differing ways to any given situation. I had not realized there were alternatives, and that I had a choice! This is something that most neurotypical persons would pick up on naturally, I think. The same goes for understanding the concept of “white lies” and when they are socially acceptable, and how people do not consider these as lying. I have only begun to recognize the many ways autism affects my world.
Are there ways in which having autism would be more neutral or positive if society’s understanding, acceptance, and ability to accommodate would be improved?
I don’t think so. It is not a thing society can have much impact on except for the bullying, which was present in one form or another all my life from family, fellow students, and co-workers. Until I can “not be autistic,” I will continue to offend and anger, frustrate, embarrass, annoy others, and otherwise fail to interact correctly in social situations. I may make fewer social mistakes as I age and get experience, but I will inevitably make them.
Society cannot fix that and neither can I, though I can try.
That is the true handicap of autism for me. I will still be autistic at the end of the day. The way others see me is partially due to my own behavior, unaware though it may be. I do not see how the things mentioned in the question about society’s responses would be of any benefit.
I do see my autism as a handicap. I also see myself as in the minority, and my statistical one person struggling out of 50 other neurotypical individuals (autism is now believed to affect about 2% of the general population) will logically not take precedence. Should not take precedence. My preferences will not be that of the majority.
It is my problem to deal with, and ‘society’ has much less to do with any handicapped person’s struggles than it does with personal interaction with any given individual. Given that each individual shapes his own ideas and actions, making rules for society is likely to be unsuccessful regardless of how well meaning.
Children have very little to say about their worlds, and those who care for them will make accommodations for them, whether it is adjusting lights, sounds, routines, and helping them find the best ways to learn, etc.
But as an adult, I can control my own environment and my own life experiences through the choices I make. It seems to be enough. If I ever have to go to a nursing home, group living, etc. because of change in my status or functioning, then life will once more be a far worse struggle. Autistic persons in institutions, group homes and care homes must feel like they are in some form of hell. I have no idea how to effect changes as a dependent person. I pray then for understanding and compassionate insight for whoever my caretakers might be.
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