Author: debrabrisch3436

Old Lady with Autism, how i discovered my autism, my life before and after, obtaining a professional diagnosis, advocating for older adults who are self diagnosed with autism and seeking diagnosis. Learning to be old and understand my autism at the same time.

First attempt at diagnosis

I began by contacting the Community Mental Health agency here in town, and asking if they knew of any local doctors who worked with adult autistic people. No

I asked at all the local psychologists offices. No

I searched the network which my GP is part of. No

I searched the internet. I found several listings for autism clinics (called and all were based strictly on 18 or under. I found a teaching hospital with an autism clinic… only for 18 or under. I found a few doctors listed, and a couple of agencies which seemed to support autism. One was the Autism Society and another was called Autism Alliance. I found a list of providers who worked with autistic people on the Alliance page. I copied it for reference. I also PM’d the Society asking about doctors know to work with adults. I got a PM back from the secretary. No formal list but one named doctor had diagnosed her as an adult though his usual practice was under age 18.

I began calling the referred numbers on the list of 10 providers in state which worked with atusim . Out of 10 there was only one provider whose screening appointment desk assured me their doctor had much experience with diagnosis in older people and especially with women. All others had said they accepted only 18 and under. Even the majority of doctors listed with this one were on the page as 18 and under.

This doctor’s specialty was “dementia and alzheimer’s screening”. I asked again if he had experience with the autistic population. Yes, he did hundreds of screenings per year. WOW that sounded right to me. They would work with my insurance. I signed up with that neuro- psychologist and anxiously waited the 6 weeks until the appointment.
We boarded the dog and my husband came with me, the appointment desk had said the Doctor would want to talk to him too.

We got a room for the night so that we could appear first thing in the morning. We were told the testing process could take between 5 and 8 hours, so we had a room reserved for that night again.

The doctor was half an hour late. He asked what brought me to him, and I explained how hard it was to find a doctor who would screen for adult autism and how we had landed with him after my long search, and how relieved I was to know he had experience assessing autism. ( note, at this point he could have said something about diagnosing autism but he did not).

“what makes you think you have autism?”

I explained how I had taken the online test and did research on autism for over a year, and that nothing else seemed to explain the struggles of my early life as well. He snorted when i made the comment about researching online. He spent a total of 20 minutes interviewing us, asking intense questions about my one desperate suicide attempt almost 40 years ago, even though I assured him I have not been suicidal since. He never spoke again to my husband but gave him a brochure to fill out that my husband said was aimed at childhood behaviors (husband had not met me until i was age 30). Tests were administered and I was exhausted by the end of it.
Doctor did not speak to me again but I was informed that he would see me again in two weeks for the test evaluation and summary. I was expected to appear in person, although we both had requested to learn the details over the phone, since it entailed traveling 4 hours one way to come to his office. He refused that request and said I must come to the office. I waited on pins and needles for the next 2 weeks, wondering if his snort had been contempt or because it was typical autistic behavior to do loads of research on any interesting subject.
I was told within 5 minutes of the assessment meeting that I could not possibly be autistic because I could communicate, do an interview and hold a job, had a husband and a family, and was aware of having been bullied all my life. Autistic people do none of those things, ( !!!).

I was told I was passive aggressive and would resist treatment but that I should really get therapy because of my problems. My passive aggressive behavior was the source of the bullying I had experienced all my life, I really needed help! All this from a 20 minute interview and a few multiple choice questions in some of the forms of tests I had filled out. It was also recommended for me to be assessed for suicidal behavior and to take a drivers test to make sure I was safe to drive . I had told him I was clumsy and had trouble with depth perception. (I hold a driver’s license for my state, passed the test easily and have a great safety record, not even a parking ticket in 10 years).

I was shocked to say the least. Stunned.
It took a long time for the results to sink in, and then I was filled with despair.
I knew that it was not true that autistic people do not hold jobs, have spouses, are not capable of recognizing they have been bullied, etc..
Every reason he used for ruling out autism was false by what is know today.

This may have been what he learned in college in the early 1970s. The understanding of autism has changed since then.

I felt I had been sent to this doctor under false pretenses, and indeed, in that exit interview, in questioning him about his other autistic patients and repeating what his appointment desk people had told me about his screening experience, he said yes he screened up to 300 patients a year and had over 600 in his care in institutions etc in the area. He said he had never diagnosed a case of autism. !!!!! ” it just doesn’t come into it”. ( ???)

Thinking about the emotions that rose in me and left me stunned at this 40 minute exit interview (which I had driven 4 hours to alone and which I was going to have to drive 4 hours back home immediately after finishing the interview) still leaves me emotionally at a loss… I can not even explain the shock I felt, the disappointment, and the frustration of having thought I found somebody who understood, received assurances from his office, and the feeling of having been defrauded, tricked, and finally disparaged… I drove home safely but remember little of the trip. I was thinking of what might be next. I did have a few alternatives, I thought. more soon.

Search for a diagnosis

I want to become an advocate for old people like me who spent most of their life not knowing about their autism and wondering why they were such misfits, outcasts, social failures, troubled souls, in so much pain and anxiety, and being blamed personally for all of it.

I saw my mother in a nursing home suffer a thousand emotional and painful incidents which may have been eased or completely removed by understanding her autism.. How wonderful if we had understood she had autism in her lifetime, and not in “hindsight” once I recognized my own autism? I Like to think that staff and family both would have more alternatives in how to deal with behaviors and frustrations, hurting souls and bewildered minds, both theirs , mine, and hers.

I hope to speak for the undiagnosed folks in senior citizens groups, old folks homes, clinics, and in every other situation that might become available to raise awareness of the “lost generations” of autistic folks unknown, misunderstood and frequently suffering among all of us.

OK, I decided to try to find out “officially” if I had autism when I decided I wanted tob become an advocate. I have recognized that to be considered credible to the public I need to have that certificate stating “officially” that I am autistic.

I started asking other autistic people on the forums i frequented, how did they become diagnosed? I started paying attention to how others writing blogs got diagnoses. I started seeing out information on informational pages for autism groups… how do I find somebody to give me a diagnosis? I learned it is very difficult to get a diagnosis as an adult in the USA. In other countries, the experience may be very different, or even worse than the “systems” used here.

Many people said they were recognised as autistic first by a family member who knew about autism or a teacher of an autistic child , had an autistic sibling or autistic offspring. Many blogs today are written about getting diagnosis as an “older person” in their 20s and 30s…. I found only one blog by a man who was diagnosed in his late 50’s, and only a handful of women older than that.



All suggestions start off by recommending referral by one’s own GP to a qualified psychologist or neuro psychologist. Some suggest asking an autistic friend to refer you to whoever the person was who diagnosed them. Some explanations on how to get a diagnosis end with the subjects (particularly women) saying they were instead diagnosed with multiple mental illnesses but not autism.

I have read so many comments and blogs about how teenage through 20’s girls through older women (in their 30s and even older) telling how they were given diagnoses unrelated to autism, and told they could not be autistic because they could communicate, they could apply for and hold jobs, they could have relationships with others, they could feel sympathy, they made eye contact, or they did not show obvious stimming behavior.

I have a very difficult time communicating with my GP and felt chastised and shamed in my first few contacts with her, so instead of approaching her about my possible autism, I decided to seek diagnosis through self referral. First I looked for psychologists within the medicine network of my GP, in town (none) and at the clinic’s home base in a large city about 4 hours south of here. Nothing… not many psychologists in the system and the only one which mentioned autism at all would not accept patients over age 18.. OK… ( to be continued)

Diagnosis Do you need one?

I began to read blogs about older women (in their late 20’s and early 30s mostly!) who talked about the surprise of finding they were autistic at such a late age. I began to search for articles about senior citizens and autism, only to find that not much information was out there.

I suspected I had autism at age 65 due to taking an online quiz. It suggested that I might be autistic and that I should look into it. My curiosity was piqued… I had heard of autism but never dreamed I might be “on the spectrum”. I really didn’t even know there was a spectrum then!

Digging deeper I began to read scientific papers and to learn the diagnostic criteria used by current medical practices to determine if one is autistic.

Things began to make sense. I could correlate my understanding (primarily my lack of understanding!) to so many incidents, pains and misunderstandings in my past. I began to see how, IF I was autistic, these misunderstandings may have come about because of my lack of social perception and my lack of social skills, and my inability to make myself understood, or to understand others.

I finally decided with great relief that yes, almost every question about my failures and struggles could be answered by looking through the lens of autism. I was so glad to understand it was not my fault, that I was not the bad person with lack of character, selfishness, thoughtlessness, cruelty and deliberate meanness that others had accused me of. I never intended to hurt others, but i made them angry so often! I did not understand, and neither had they. How freeing!

Now I understood, I was able to examine all sorts of things in my life and try to figure out how to go forward with this new understanding. I have things I know I need to learn… I can work on those. Do I need a professional diagnosis? Not for myself. I do not need one to access disability support, nor do I need diagnosis to confirm what is obvious to me at this old age of now 67. I need no financial support, nor accommodations for work, thus need no official confirmation.

I would be happy to leave it there and use my new understanding to go forward in my personal life, self improvement goals, etc. However, I have a new passion. I realized in uncovering my autistic identity, that I grew up with an autistic mother. I was caretaker of my mother for the last years of her life, and watched her suffer in a nursing home with Parkinsons disease, dementia and of course, her un-diagnosed autism.

So many things might have been made easier if it was known she was autistic.

I wish to become an advocate for undiscovered elder autistic people. I wish to speak to the public about the hidden generations who have survived on their own with little understanding of their condition, blaming themselves for their shortcomings and misunderstanding their own lives through the shame and blame of others in all they do, not understanding their own emotions and their perceptions, surviving and struggling so much more than they need to because they do not understand their autism.

I want to help people in nursing homes and institutions who are needlessly subjected to the tortures of over stimulation or sensory overload and whose autistic behavior have been misidentified as psychotic disorders, etc.

In order to do this, I must have that little piece of paper that says to the world “I have been diagnosed as autistic” . In order to have credibility with the public, I must have socially acceptable documentation. So my journey has begun.

You may not need professional diagnosis, or you may need it badly to obtain needed support. There is no shame in not seeking a diagnosis, there is no shame in being diagnosed professionally/ officially. But in the USA, obtaining a diagnosis can be a struggle. More on this topic soon.

Before I knew about autism

It never occurred to me that I was having struggles that other people just did not have. This is a paraphrase of a well known quote by Alis Rowe.

It was always obvious that I was different, awkward, socially unacceptable, uncoordinated, “clueless”.

I blamed myself, and others did too, for my multiple failures to succeed at so many things that seemed simple to others.

I felt enormous guilt and shame because I was unable to “get it” about so many facets of every day life. I was scorned and punished, bullied and belittled because I simply could not (and people thought ‘would not’) behave in ways they expected me to. I simply had no idea how to do what they thought i should do. I can remembering being told over and over to shape up, to wake up, snap out of it, get with it, to stop feeling sorry for myself… to pull myself together, and I can remember wailing “but i don’t know how”.

Since I learned about my autism I have learned that it is my neurological ‘wiring’ regarding sensory processing which is what makes me different and accounts for many of my past struggles. Every autistic person is different, and struggles with sensory input to varying degrees.

What I describe as true for me might not be true for others. I believe this is one of the reasons it has been so hard to pin down exactly what autism is/does and describe it (autism and its ‘symptoms’) so that it can be recognized and diagnosed, helped where needed.

Sensory input is the way we relate to the world, the way we interact with each other… if one or more senses are skewed or how the processing of the input offered differs, it can throw off our understanding of the world. Things that are obvious to most can be a complete struggle for understanding in an autistic person. Our processing is often different.

If you are autistic, or know or love an autistic person, do you understand how you and or they process information and what their specific struggles are? I am going to list what I have learned about my own processing struggles. Each autistic person will have strengths and places where they struggle the most. I was completely unaware of how I struggled, in what ways, until I began to learn about autism.

Some of the things I describe here are not directly related to autism through scientific studies, but have been casually observed to be common in autistic populations. I list them here because they are still ways I struggle with sensory input. Each autistic person’s list will vary.

I am first of all unable to visualize in my head. I see no pictures there at all whenever people are talking, I can not visualize what they describe. I have an imagination, but it does not show me pictures, and it relies on things i have experienced or otherwise stored in my memory to help me understand. This condition is called aphantasia and is present in about 2 percent of today’s population, both autistic and non autistic. It appears to be random or possibly genetic but no link has been made to autism at this time. However, if you ponder a few moments you will see how this might change the way I process information I receive through eyesight.

I have prosopagnosia, the inability to recognize faces.. I may know you from every day interactions for years and still not ‘see’ you on the street. change hair style, glasses, wear a beard or mustache since i have seen you last and i will never find you!

I had a neuro-psychological test not long ago which confirmed that I have difficulty processing visual things. Videos, TV, Movies, Lectures, Presentations, and so many more things which you see every day are difficult for me to comprehend . I have difficulty learning from visual demonstrations (at work or in the classroom etc) I can look at still photos, illustrations, maps, and the printed word and process them easily. It seems to be things in motion that confuse me and happen too fast for me to understand readily. No fast action sports or games for me! I was the kid they threw the ball to so they could watch me fail to react soon enough and get hit in the face. Very funny! I have difficulty judging the speed of oncoming traffic, for example. Anything done at speed worries me to say the least. I just can’t process it fast enough.

I also have problems following spoken word. No radio, no vocal songs, no narrations or reading out loud… difficulties in the classroom, difficulties with instructions in work situations, difficulties in any conversation… can you imagine what it is like to struggle to comprehend most things around you as they happen? My range of hearing is normal to sensitive, being able to hear higher vibrations and lower ones slightly wider range than average. I always wondered why I liked instrumental music so much better than music with vocal parts, especially women’s …. now I understand that it is because I have such difficulty understanding and processing the words involved.

Long before I knew I was autistic, I figured out that in many situations I needed somebody else to explain to me what was happening or to explain when the event was over: “what do they mean by that”?
I have frequently told people that I need to have things explained to me where others seem to know by intuition or some other means that escapes me. Learning about my autism explained that too!

I talk a lot about what an autistic person does not do well, but very little here has been said about what strengths we have. My tests showed (and I knew before- from experience and learning on my search for information about autism) that my greatest strength lies in the written word. I have good spelling and comprehension, vocabulary tests are well above average. I have a gift for words!
Reading has been the key to my personal understanding my world, and I learn best through printed matter. I have spent most of my life trying to obtain information through the format of print.
The internet has been the most powerful influence in my life since books.
For those of us whose world is opened through reading, to understanding, it is a great gift of a magnitude which I am at a loss to explain.

I don’t have to look at somebody and be distracted by their movement, clothing or appearance while trying to understand what they are talking about, struggling to interpret their body language, their tone of voice, and interpreting their motivations, demeanor, inflections while simultaneously trying to sort the information they are presenting from the other conversations, background noise, activities, etc. I can read what they say and understand perhaps with a few questions exactly what they mean. It is a miracle!

My feelings of touch can be hypersensitive, especially to others suddenly touching me in any way ( perhaps a conditioned response). I hate little stickery labels, pebbles in my shoes are intolerable, as are clothes that cause discomfort. I dress for comfort and not style. I seem to experience most other sensory input in an ordinary or average way, appreciating comfort or discomfort on ‘normal’ levels, except that I seem to have a very high tolerance for pain. Sense of smell and taste seem to be “normal” in range .

So that is the struggle I have to live in everyday life. Not “poor me”, simply an explanation and no excuses… but understanding ‘why’ life has been so hard for me in so many ways has been explained by understanding how presence of my autism has affected my life. My understanding comes with new awareness of how my autism also affected my behavior to others and their perceptions of me. Each autistic person’s inventory of strengths and weaknesses will be very different. Many experience the world through mostly visual means, but please understand the fact that we struggle many times to know and understand things that seem obvious to others. Knowing about my autism will now allow me to better adjust my behavior, deepen my understanding, and give me insights into so many windows that were closed to me. I would love it if I could somehow present the self knowledge of autism to those who have yet not discovered the key to understanding their world lies in that one word. Autism.

Autistic Meltdown

Have you heard about autistic meltdowns? Most people are familiar with overload breakdowns and tantrums from small children. One stems from simply being unable to handle a situation, causing a falling apart and lack of self control. The other is a willful and defiant manipulative technique where the person having the tantrum attempts to gain control of a given situation, or other people, usually trying to change the outcome of some situation which is not to the tantrum-giver’s liking.

It might take a bit of close examination to discern the difference.

Because people with autism can have our senses and emotions overloaded more easily due to struggles in processing, autistic meltdowns are not uncommon. When a person can not quickly process events, deal with unwanted noises, lights, touches, or emotional feelings , we will generally deal with this by wanting to escape. People under other peoples’ care or control (children for example) may not be listened to when they exhibit signs of distress, ask to leave a situation, or try to protect themselves from too much input by covering eyes, hiding, covering ears, etc.. Stimming( self comforting behaviors) much more heavily than normal, rocking, pacing, etc, showing restlessness, anxiety, all can be signs of impending meltdown , but could be helped by removing the individual from whatever is causing the discomfort and distress.


The second stage, if the distressing overload of senses or emotions is not escaped, is to shut down. I should say that this could be momentary or of very long duration. I call this ‘deer in the headlights’. The individual is not able to take in the input overload and freezes, unable to respond. I will react like this when suddenly called upon to answer unexpected questions, when suddenly facing danger (like an oncoming car, impending or looming interactions I feel helpless to deal with) If input continues and the individual is unable to deal with things (unable to understand what is expected, unable to defend oneself verbally or physically, is overwhelmed by senses or emotions of any kind due to inability to process quickly and to think of ways to react, etc), Meltdown happens. It is loss of all self control, shown by falling down, throwing oneself around, hitting oneself or others, pushing, struggling, screaming, crying, or otherwise having complete inability to act in any way to help oneself or to interact with others.

Some people simply shut down and remain locked into themselves , withdrawn from everything and everybody around them.

Eventually the person loses energy as the frustration, fear, anxiety, distress, emotions are released. I think of meltdowns as similar to an overloaded electric circuit.. if one tries to send too much electricity ( information, emotional or sensory input) and the board (ones brain in this metaphor) can’t handle it, it blows a fuse or otherwise discharges the surplus energy. Meltdowns are never purposely performed, as tantrums are… they are spontaneous and very different from individual to individual. There is almost always embarrassment and shame, it never having been the intent to cause trouble or make oneself a spectacle. Recovery from a meltdown can take hours or even days, or only a short while, depending on the individual and on the quality of support they are able to access.

Autistic adults report that differing things help in different stages of meltdown. If they are listened to and allowed to leave when they express discomfort in any situation, many meltdowns can be avoided completely. Some will want to have dark and quiet, some will want to walk or run. Recovery often involves hiding in a dark and quiet safe place, some people will sleep for a long time and feel better when they wake.

There is not a lot known about the physiology of autistic meltdowns, but it is very definite that it is never intentional and never to gain control of another person or situation.

If you see an older adult and you think they are having unseemly tantrums, and behaving badly, look at it from the lens of autism. It could be meltdown.

Getting older with autism

Many of us born 40 years ago or more grew up on our own, without insight into what made is ‘different’ ‘odd’ a “weirdo” , nor did we have any idea that the struggles of our lives were different or greater than others around us. We grew up self critical, not understanding why things that seemed so easy for others were so very difficult for us. Why, why, why can’t I ‘get it’ , ‘do it’, ‘behave like others’, ‘make friends,’ ‘be good at a certain skill or schoolwork’, why can’t I sit still, why can’t I pay attention…. why? Now we know the answer could be autism.

Autism is neurological in origin, our nervous systems are different and we learn to use our bodies and brains differently because of those differences. This is ‘neurological processing’ differences. But autism is not defined by how we process things from a neurological basis, but it is defined by our behavior. This is why autism is lumped in with other neurological issues which show behavioral consequences.

When I began to learn about autism I recognized myself not as I am today, but in my childhood and early life. I could see that most behaviors and problems I had when I was young were symptoms/signs of my autism. Along the way, in my early 30’s, I got some good counseling for unhealthy behavior I had learned in my early life, and was able to put into practice, without ever suspecting I was autistic. Those healthy behaviors have stuck with me and I suspect without those and a very reliable and supportive spouse, my life would have ended in misery years ago. I suspect there are thousands of autistic people today in their senior years who have not been lucky enough to learn about their autism and are still struggling with false beliefs about their perceived failures, weaknesses, misdiagnosed mental illnesses, and more. I would like to try to reach others who suffered as I did in childhood and early life, and who may be suffering now with false ideas about their self worth, emotional strength, worthiness, even wondering about their sanity and ability to recover.

Nursing homes, hospitals, and other institutions generally have no idea about autism and there are so many things that could be done to help people cope within the restrictions of their surroundings, and help individuals toward better health and allow better care.

As we get older, studies suggest some symptoms of our autism may grow in severity. An autistic person who is easily confused in every day life may become so confused in a care setting that they are diagnosed with dementia or other disorders. An autistic person who is distressed by sudden touch may fight bitterly when attendants try to give basic care to the bedridden or wheelchair bound, for instance. Those autistic folks who are upset by noise and flashing lights will not enjoy daily “social time” in a large room filled with echoes, television blasting and fluorescent lights flickering, and as a result may be restive or combative. Echolalia may be mistaken for mocking or other deliberately insulting behavior.

There are probably a hundred more issues that could be helped to make things safer and more comfortable for residents and staff if properly addressed through understanding of autism. So much misunderstanding and misery could be avoided or alleviated by enlightened choices on the part of the autistic person and those who care for or about them in any setting.

The Lost Generations

Since figuring out my autism, I have spent countless hours reading scientific papers, autism websites, personal blogs, and also I have joined a few online autism forums. One of these is especially for older people who have gone undiagnosed until recently. For those of us to finally learn we have autism, there is shock, relief, and a whole array of reactions. Many of us seem to go through the stages of grief. Denial, bargaining, anger, depression/sadness, and acceptance… back and forth. It is so wonderful to have the understanding and appreciation of others who have also experienced so many similar things.

I have been fortunate to get advice, insights, education and counsel from the members of the online group. Most precious to me is to know I am not alone, that i have a neurological condition which makes it much more difficult for me to navigate my world, especially socially and emotionally. I am so blessed to have the internet. I can communicate with ease and not be confused by body posture, eye contact, facial expression, tone of voice…not having people put off by my own oddness and appearance. Most of the people I communicate with are very direct without guile or manipulative behavior. What they say is for the most part what they mean. All of us grew up in a time where nobody knew about autism. We are able to share experiences and understand each others’ frustrations, concerns, struggles of understanding and coping, and share strategies to overcome the many ways in which our autism gives us trouble. Simply a miracle which could not happen without the internet.

What about those who went before? My mother was born in 1929, a child of the depression and in poverty. She too had autism, although I did not figure that out until I learned of my own autism. People with autism in earlier generations were the street people, the crazy uncle , the bachelor brother, the hermit, or the local cat lady. My mother’s family called her a simpleton, or said she was simple.

Autistic people in earlier generations were the quirky professors or music teachers, or the obsessive archeologist or scientist. They were manual laborers, odd job people, those assigned to simple back room tasks in domestic or industrial, or farming roles. They were folks in the poor house and housed in institutions because so many of their behaviors were not understood, and were assigned to severe psychiatric disorders. Originally autism was thought to be a form of schizophrenia.

Autism has always been with us. Statistics show we are much more prone to anxiety and depression, although that is not considered diagnostic of autism. Statistics also show our lifespans are considerably shorter than average.

What of those in nursing homes and institutions being medicated and labeled as intractable, hopeless, confrontational, combative, etc? My mother’s experience in nursing care could have been much better if we had known of her autism and asked for accommodations for her care. So many of the ways she was approached by staff and how she reacted to them could have been helped by simple understanding. I may talk of this more in another blog. It makes me quite emotional to think of how she suffered and how helpless I was to make her life better.

There are thousands of undiagnosed adults who have found their own way through life, never understanding that they had a condition that made everything in life so much more difficult, feeling like a failure, lonely because they don’t know how to reach out, frequently working low paid jobs or not working at all because of the social hurdles to overcome in society in order to perform even the most menial labor. How much better it could be to understand, to learn what has happened to oneself, and to know it was not your personal failings or lack of character which left one full of frustration, anger, sadness, and shame.

How much better to learn to cope in better ways, to learn to communicate effectively. How wonderful to have those around you understand your upset at sudden touch, loud sounds, flickering lights, sudden demands to change whatever you are doing to something else. How freeing to escape demands to sit in groups in classes or craft groups or social tea parties and the like when it is all overwhelming and difficult to deal with.

I started this blog hoping to help older people find and recognize themselves if they are autistic. My own personal discovery of my autism has led to final understanding of so much emotional pain, so many fears and anxieties which developed because I did not understand I had autism, and how it affected everything in my life. 65 years of emotional pain, deep anxiety and depression.

Pain has for the most part dissipated now that I understand what happened, and how . I will always wonder what might have been, but of course that is all speculation. Reality is where i spend most of my time, not fantasy.

Perhaps you have somebody you care about, even care for in a medical situation, nursing home, home care, or maybe it is the odd duck in church or a co worker at your place of business. We are in all walks of life from the greatest to the smallest. What a relief to finally know and understand, and to learn that you are not alone, that there are others like you, and for those in care- that people caring for you will try to make your struggles a little less severe, help keep you from anxiety and depression, and to feel finally, understood.

Watch out for Autism woo-woo

I began to research autism and connect myself with that condition when I took my first online “autism test”. Results said I was most likely autistic and that I should try to learn more, maybe seek professional examination.

The problem at present seems to be that there are very few Doctors/psychologists/neurologists interested in Autism in old people, and that women are often overlooked completely. Autism presence has risen from one in a thousand estimates to one in 58, as diagnostic criteria are defined, taught, and finally beginning to be recognized.

Some people would use these statistics to draw the false conclusion that there is an epidemic of terrible things causing more and more autism.

Claims are made that “something is causing this extreme rise in autism” , and there are all sorts of frantic stampedes to push unproven theories, cures, and diets, supplements, exercises, therapies, and causes.

Autism has always been with us. We are just getting better at recognizing it. Hidden generations such as my mother’s and my own are being discovered because we now are learning to recognize autism as diagnostic information and deeper understanding of autism’s complex effects are coming to the public eye through scientific research.

Since I began learning about autism, I have noticed there are more and more claims from groups about curing autism, autism recovery, miracle treatments of special diets, therapies, etc… In the short time I have been searching I have seen so many websites, and recently, proliferation of books about autism. Disturbingly, I have also seen so many false and even potentially harmful ‘treatments’, “therapies”, diets, “cures” etc. I urge the reader not to take these claims at face value. Many things claiming to be researched and approved by scientists, doctors, and “experts” who agree…..
are not, in truth, worth the time, effort, expense, or consideration.

Some are simply ineffective, many can be harmful! Just because somebody makes the claim, doesn’t make it fact. People desperate to help loved ones can be played by their heart strings, rather than engage their brains. Look for links to scientific studies, published in peer reviewed groups, look for multiple studies proving or refuting claims made. Do your homework and be skeptical of miracle, quick cure, and otherwise hope raising false claims.

As a child, when I would argue for permission to do something, because “everybody else is doing it” the standard response was ” if everybody jumped off a cliff, would you do it too?” Keep your eyes open and your mind questioning, skeptical and looking for real scientific documentation. Your own safety and health are too precious to risk for fads, confabulations, and quackery.

Autistic vocabulary

You will find there are many words used regarding autistic symptoms. I am going to name and try to define a few of these .

Proprioception: The way you relate to your body in space.. how you see and feel where your body is located in any given situation… you use your sense of balance, vision, depth perception, perhaps sound and sense of touch or feelings of pressure to keep yourself oriented to your place and position as you sit at your desk, lie in your bed, take a shower, participate in activities, etc. When you do these things, your system senses where you are, what physical position you are in, how fast you are going ( or if you are sitting or lying).

Praxis: The ability to move your body into various positions or motions in a direct or meaningful way. The ability to make precise muscle movements to perform various tasks… the ability to rise from sitting, feed oneself using spoon or fork, to form words with tongue and lips in order to speak, etc all involve deliberate movement to perform certain tasks. Apraxia or dyspraxia describe the lack of precise ability of praxis. Uncoordination of movement or speech impediments would be examples of this.

Vestibular: Related to the inner ear system which directs balance and sense of movement, feelings of motion… many autistic people seem to seek to stimulate the vestibular system through self comforting behaviors such as rocking, spinning, swaying, nodding, etc.

Stimming: Self stimulating behavior which seems to release tension or comfort an autistic person. Anything can be a ‘stim’ … stereotypical behaviors include the above mentioned motions of spinning, rocking, swaying, nodding… can also be foot or hand motions, humming, singing, repeating word or songs over an over, also such things as self grooming, twirling hair, sucking thumb or fingers, constantly chewing gum, or other things. repeatedly performing almost any behavior. These or any actions done as a form of release or self comfort are called self stimulation, or stimming/ stims.

Not all autistic people have stims, but many of us do. Many stims are not as obvious as classical hand flapping and rocking… Some of us have learned to redirect things such as hand flapping into sitting on ones hands or holding onto them, perhaps we take up running or walking, swimming, or eat constantly instead of the more obvious stims from our early childhood. I was stunned to realize I had many stims in childhood and have redirected them as I am now a mature adult. But I still have them!

It is a false assumption that all autistic people participate in self stimulating behaviors.

It is a false assumption that stims are fixed behavior and do not change.

Sensory processing : The neurological ways we deal with any input to our senses. Many autistic folk process sensory input in different ways from what is considered the norm (neurotypical). Although it has been common in the past to say that autism is essentially a neurological processing disorder, now it is more politic to say it is a less common form of sensory processing.

Many autistic people will say it is not a disorder at all, comparing it to the differences in computer operating systems, Mac and Windows for example.

I will not get into the politics here, but will stick to the definition of sensory processing as simply whatever way any given individual receives sensory input and translates it to useful information within any given neurological processing system.



What it is like to have autism

For every individual it will be different, as it would if I had asked “what is it like to grow up in America ( or other parts of the world)”, or asking what it is/was like to be deaf, blind, “normal” ( whatever that is!) . Our own perceptions and thoughts of every experience will be different from any other persons.

I grew up in a time when behavior was tied to morality and /or to inner strength of character.. You were good or bad and it was intentional it was assumed that you lacked strength or lacked moral fiber if you stepped out of what society expected for you. You were of strong character, or you were weak, with all the implications of those things spelled out very clearly. A line was drawn. In the 1950’s and early 1960’s of my early childhood, roles were clearly defined.

The later 1960’s changed everything, and those rigidly interpreted codes became confused and the lines became blurred. Of course this is simplistic, and I know that there were many in generations before me who refused to “play society’s game” but as a child I was not able to see this. I tried very hard to please those who were the rule makers and enforcers, and struggled mightily with understanding what those rules were. I was constantly in fear of those who had power over me because of punishments I was constantly receiving without actually understanding what I had done to deserve them.

My mother told me once in amusement that I would quickly sit on my hands or hide them behind my back when she came toward me suddenly… (she hit me for touching things she did not want me to touch) This was before I had words, as a baby. I still put my hands in my pockets, pull them into my sleeves or hold them in back of me or sometimes in front, and always cover them while i go to sleep.

I went to school, and it was much the same… confused and afraid, breaking rules I had no idea were rules, not understanding what was expected of me, not knowing things that average kids were able to understand intuitively.

My sister immediately second to my birth ( I am oldest) astounded me when she would comment on things she perceived about my mother, father, and their relationships with each other and with the other 2 youngest siblings. I could see the truth in her comments, but would never have noticed the things she spoke of if she had not pointed them out.

This happened all of my life, and I was often used as a scapegoat or a target of bullying, at home, at school, at work….set up and mocked because of my taking things literally, not understanding ( interpreted as willful disobedience) simple trust in promises made, etc. affected absolutely every small corner of my life. I am still unraveling incidents of the past by looking at how autism perceptions/ non perceptions may have colored my behavior and other people’s subsequent reactions… It is so painful , but it is at least now comprehensible, at least I know now it was not my fault, any more than it was theirs for misunderstanding me and how to ‘reach’ me… none of us knew!

Understanding my autism has helped in healing my constant and deep emotional pain and allowed me to forgive those of whom I was afraid, hurt by, and those I hurt unknowingly and unintentionally. I can let go of the past, file the whole sordid and painful thing, and start from a new standpoint, a point of view colored with understanding of my autism. ( and my mother’s, but that is for another day) It is like the difference between life as nearsighted and having new glasses, or like living with deafness and suddenly being able to hear. Everything is new, everything is finally able to be deciphered and understood. Thank goodness for understanding at last, after 66 years of struggle, sorrow, fear, anxiety, pain and misery. The relief has been tremendous!

My overwhelming memories of my childhood are of anger being directed at me, punishment frequently involved, and constant fear of that punishment and feeling absolute absence of love, never understanding why.

” Why?” might be the life- long mantra of many autistic folk. When I discovered my autism, I discovered the answers to so many “why”s of my early life. Why others were always angry and frustrated at me, why they did not like me, why I became a target of bullying, on and on and on. Autism answered almost all of it!

It has been such a relief to look at those days and see how my autism answers that question. Why? Autism!