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.

Autism diagnosis, things that are not listed in the criteria.

There are many things that are not listed in the official diagnostic criteria (DSM) in the USA. Two things that seem almost overwhelmingly connected to autism in adults is anxiety and depression.

I don’t wonder that these conditions often co- exist. When other conditions exist with a diagnosis, the state of these things being present in the same individual at the same time is called “co -morbid”.

So far nothing seems to have been documented through studies to tie these conditions together as far as genetics, neurological, or other conditions are concerned, ( although studies do recognize they are often co-morbid with autism). I have no difficulty at the finding that many autistic people also have anxiety and depression. I know in my own case it is most likely that I have anxiety and depression “because” I was first autistic.

When one is not able to decipher motives or meanings of other people, is confused over how to respond to any given situation….and is perpetually getting into one form of trouble or another because of it, I can see that a person would feel worried about how to avoid the consequences of those mis-perceptions : social pressure, bullying, punishment of any and all sorts, isolation and feelings of helplessness to avoid the situations involved. I should point out that these mis-perceptions are on both sides, with NT people also not understanding motives and responses of autistic people and thinking that many of our behaviors are intended to be arrogant, provocative, deliberately offensive, etc. .(thus provoking punishing and angry responses)

I can understand that the feelings of failure over every social problem and the perpetual worries, knowing through experience, even at a very early age that one does not know how to/ can not avoid these painful experiences, how this would lead to an attitude of perpetual defeat and sad resignation to ones fate. Depression, in other words.

I have read many blogs and articles by others who have autism, and many seem to think this is likely. As I learn about my own autism and understand how it has affected my life in so many ways, my own depression and anxiety are slowly lifting. This experience would seem to confirm in my own mind that the cause ( autism) and effects of my behavior due to autism’s presence, (anxiety and depression) are likely. Maybe some day science will explore and prove this.

History of Autism

This is a condensed history of Autism. In keeping with the practice of citing references, please note I used a Parents.com article titled ” The History of Autism” as a base of information, ( see original online). They provided the “bones” for this blog. ( Thank you) Here I have used my own wording, but full credit for the majority of dates listed and the homework involved in creating the list must go to them. I have added comments and changed wording, details, and added dates that I was able to find while searching for documentation and more information. I have been able to fully confirm the statements here using online research outside the quoted reference above. You can check for more info online as always.

Autism Timeline

1908 Eugene Bleuler , a Swiss psychiatrist, uses the word “autism” to describe traits of a certain group of schizophrenic patients. The word is based on Latin root words which mean “keeping to oneself”

1925 Grunya Sukhareva, a Russian child psychiatrist , described symptoms of recognizable behavior patterns in a group of children she described as autistic.

1943 Leo Kanner MD, publishes a paper describing “early infantile autism” describing traits of children who isolated themselves from others.

1944 Hans Asperger , Viennese pediatrician, describes “a milder form of autism” in a group of boys he was studying, saying they had trouble with social interactions and obsessive selected interests.

1950’s ( and well into the 1960’s ) Through the work of Leo Kanner, autism and many psychological disorders were blamed on cold and uncaring mothers. In 1967 Bruno Bettelheim even coined a term “refrigerator mothers”, and Kanner’s original theory was popularized on news media and talk shows. The idea of “poor parenting” being to blame for so many disorders was touted- although the same ” poor parents ” might also have had several children who were thriving. This theory has been disproved and for the most part discarded, and not a moment too soon. ( my opinion)

1977 Studies of twins shows autism is genetic and due to biological conditions in brain and neurological development. ( continuing scientific studies have even located specific genes which seem to be connected to autism)

1980 “infantile autism” is listed in USA’s DSM( diagnostic criteria) for the first time as a condition separate from schizophrenia.

1981 Lorna Wing, psychiatrist in London England, originates the term Asperger’s syndrome in describing higher functioning autism in a group of individuals. Lorna Wing is also credited for recognizing and describing the “triad of impairments” that is used as part of the diagnostic descriptions of autism today.

1988 Rainman movie is released, and public awareness of autism is raised to a higher level. Today autism is a feature in many characters of fiction, movies, television, even cartoons. Media has raised awareness, but frequently also has caused many misconceptions about autism.

1991 USA adds Autism to be included in education system under Special Education category.

1994 Aspergers’s Syndrome added to the DSM in USA as a separate category of high functioning autism.

1998 Lancet publishes a study looking at the possibility that MMR or other childhood vaccines may cause autism. This theory has been debunked by many published scientific studies after, but it still has a following despite proof to the contrary.

2000 Thimerosal is removed from all childhood vaccines due to public pressure, there has been no link found in studies; once again, the theory of vaccines or any of their components as a cause of autism has been scientifically proven incorrect.

2009 USCDC estimates autism is likely present in 1 of 110 children.

2013 DSM 5 in USA removes Asperger’s syndrome as a separate diagnosis, replacing it with new diagnostic criteria as autism.

2015 USCDC statistics now show autism may occur in 1 of 58 individuals. Males are still diagnosed more frequently than females, and the change in numbers is most likely due to better recognition and diagnostic criteria. There is discussion today (2019) that diagnostic criteria need to be developed further and there is a growing perception that females may show different signs of autism than males.


What Autism IS and IS Not

So, having already described the diagnostic criteria for Autism in the USA, what, exactly is Autism?

Autism is a neurological condition which is present at birth and which is usually noticed as a child grows. In the older generations, nobody knew of it, nor did doctors look for it. ( People who are now older adults went through their lives being noticed as “odd” or worse, but there was no understanding of “why” and many of us were considered defective in mind, character, or weak willed, etc., worse, accused of deliberately willfully behaving badly, when in reality many of us were baffled and confused most of the time, and had no idea what everybody was so angry about.) Autism in the individual causes a different way of processing information, and often involves struggles to interpret daily experiences. Autism can inhibit perception of expression or self expression and can affect the way the autistic person sees and interprets their world. It can powerfully work on emotional aspects of the autistic person’s lives, confusing perceptions, or causing emotional reactions to sensory overload.

Things that are easy for a person without autism ( those who have a typical way of processing neurological information received) will easily interpret many things which people with autism may miss or need to have explained to them. Things I refer to are things of every day living… a facial expression, a tone of voice, a body movement indicating an emotion, words spoken in sarcasm or metaphorically. Autistic folk often refer to typical or average persons as NT’s or Neurotypicals… This reference term is taken from medical studies and reports, and is an easy way of distinguishing those who are autistic from those who have more common neurological abilities to process information. If I use the term NT or Neurotypical in this blog, I am not intending to disparage or otherwise create an ” us or them” sort of atmosphere, but only to compare what the a autistic person vs the average “person on the street without autism” experiences. Any other meaning one finds in these words is in the reader’s head and intentions, and not mine. ( I have learned that autism’s many issues and approaches, like any other human thing, can be very divisive and polarizing. Politics is any place where two or more humans gather, by default.)

Autism is believed today to be genetic in character, and not caused by vaccines the mother or child receives, regardless of the timing, the quality of mothering one received early on, by the temperature in the place of the delivery room, by what your mother ate or was exposed to during pregnancy, by what you eat or are allergic to later as a child. These truths have been scientifically proven. I will not submit pages of documentation here but this information can be found in common internet searches.

Autism can not be cured or prevented in early childhood, the neurology one is born with stays essentially the same all through one’s life. Many people with autism are capable of learning ways to fit in socially and “work around” some of the difficulties presented by autism when dealing with society today. Those who become especially adept at the social skills needed to survive and thrive in this world are sometimes said to be “masking”. It is very difficult to maintain the vigilance and focus needed to navigate the social world, and to do so takes a great deal of energy and skill to do what comes as intuitive and automatic to “neurotypical” populations.

Although autism is neurological in origin, it mostly gives people who are autistic trouble with social issues. It becomes a behavioral issue when we try to function in our world without seeing how it affects our perception, our beliefs, our every day activities, our relationships with others, every aspect of a life as a human being can be and usually is affected by autism. Sensory or informational overload can cause emotional reactions of epic proportions. ( more on this later) . The degrees of being affected are varied and autism does not show itself the same in any individual. Thus the term “spectrum” when discussing autism. Many people with autism are gifted and have great talents, above average intelligence, and are contributors to society on many levels, from writing, engineering, medicine, biology, teaching, and so many more aspects of life. Many good things can come of that special neurological wiring, and an internet search of famous people with autistic characteristics or diagnosis might amaze you.

Autism is not the same in everybody. We are not “Rainman”, we are not Thomas Edison, or Einstein; we are not all to be confined to nursing homes or institutions due to severe difficulties in perception and behavior, although some individuals are or have been each of these things. Each of us is different. Autism is not consistent or the same in any of us. Perhaps that is why it has been such a long time coming in scientific description and understanding.

Diagnostic criteria of Autism continued.

In addition to having social deficits, Autism is also diagnosed by discovering the following traits :

A. Repetitive behaviors

Repetitive behaviors can be physical, such as rocking, twirling, spinning, wiggling legs, flapping hands, or other motions of the body.

Repetitive behaviors can be actions taken repeatedly such as lining up or sorting items into categories or by size, color, description, or other specific criteria. Other repetitive behaviors can be things such as always slapping a wall or post when it is passed, in the same way… pushing or pulling or petting any items in any sort of continuing pattern… either/or including daily, continually, when stressed, or any other repetition form.

Repetitive behavior can be in language, too! Always using the same phrases in certain circumstances, seemingly randomly speaking the same words, singing or humming the same tunes over and over or at specific times or places, echoing words of others (echolalia) or responding to circumstances with quotes from books, tv, movies, games or other sources, and using the same quotes sometimes seemingly inappropriately.

One can also have repetitive behavior in food choices, paths taken to certain familiar destinations, maintaining the same schedule daily, the same routines, or rituals.

This last leads into and seems to tie into the next autistic trait:

B Rigidness or inflexibility, resistance to change.

Rigidness refers to unwillingness to do things differently, or to change actions suddenly, also/ or to insist on only certain things in schedule, clothing, food, planned activities, travel, or any other situation of daily life. Some rigidity is in fixed beliefs, unchanging attitudes toward certain thoughts, circumstances, or activities. Any changes in plans, or deviation from these specific behaviors is cause for alarm or active resistance. Sometimes resistance can be dramatic, and even explosive in nature.

C Restricted interests of unusual or abnormal intensity.

Restricted interests means a narrow range of interests. This can happen among any populations, or we would not have people with professions… where it gets really specific is the unusual or abnormal intensity of the interest. Where a person in the normal population might collect stamps, the autistic stamp collector may collect stamps of only one color, from one country, or certain years. We all know about the stereotypical “train spotter” male autistic example. The unusual is easier to spot, examples being things that would not attract the general poulation by its specific nature : perhaps the rare person who collects red plastic shovels, is interested in fossils , but restricted only to sponge fossils of the Devonian era ( one of my own ‘special interests’ ) Or to the biologist whose only passion is finding certain microbes which emit a specific chemical…. The abnormal intensity is also easy to spot… the individual seems to be completely focused on his or her few specific interests and has very little interest, or sometimes not very much knowledge of other categories of life. Sometimes interests make no sense at all to somebody else whatsoever – the man who collected every scrap of paper he could find, for example, and refused to part with any of his collection. ( see how this ties into inflexibility as well as repetitive behaviors?)

D Unusual Sensory perceptions and /or related behaviors

Autism seems to directly affect our senses of sight, smell, touch, taste, and hearing, as well as our sense of balance and our ability to “locate” ourselves in the world… translating this to our often being seemingly uncoordinated, clumsy, moving oddly, and being either hypersensitive to our senses or seeming totally oblivious to sensory input. Autistic people report times when they are overwhelmed by sounds that the average person would not even notice. We sometimes react with extreme distress to simple touch or to the feel of a twisted seam or a label on our clothing, or to a smell or taste which to an average person is not offensive or is quite tolerable. This sensory sensitivity can be visual and show in reactions to photos, videos, movies, and the like, or to extreme sensitivity to light and things such as flickering and shadow patterns. Some of us cannot ride in a vehicle because the feeling makes us anxious, nauseous, or distressed. Some of us will only eat foods of certain textures or flavors and have very strict rules as to how the food should be presented or where and how it should be eaten, etc. On the other hand, we can be oblivious to our sensory input, and autistic people report having broken bones or deep wounds or other painful conditions and not discovering such until somebody else points it out. ( why are you limping, bleeding, etc?). Some autistic people report having very high tolerance for pain, others report that even a scratch or an insect bite can send them into hysterics of pain. Some autistic folk report having had both hyper sensitivity and oblivion to sensory input at various times and under varying circumstances.

The sensory input we receive can also cause us to have fascination with certain sensory experiences. I love the sound of bells, for instance, and will seek out audio of any sort of bells or chimes, indeed i have files saved of the sound of bells that might cause amazement to some. Once again, the unusual interests will be most notable and the intensity of focus on those sensory interests will likely be considered extreme.

It is not necessary to have all the listed autistic traits in order to be considered autistic. In the first 3 described behaviors all must be met but only 2 must be present in A through D. The things i learned and have repeated here apply to diagnosis in the USA and i understand that the criteria vary from country to country.

I spent almost a year and a half learning about these criteria and searching to see if they applied to myself. I have never looked closely at myself or tried to understand myself, knew little about myself, just getting along day to day, caring for others and doing my work just to keep up with those things: that kept me exhausted and striving. I retired at age 63, learned about autism at age 65, and self diagnosed at age 66. After retirement i had personal time and have been so happy to have the opportunity to learn and study! More on that in another blog.

It should be noted that I am only one person searching for my autistic identity and sharing information I have learned, I am in no way an authority or expert. The internet is full of information, and what I am trying to do here is distill the things I have learned so that other old folks do not have to go through the long search for understanding. Saving a few steps, and trying to help focus on the diagnosis along the way. You are free to search out documentation and further information. It is “out there”.

More about the diagnosis of autism.

The “Big 3” in the diagnosis of autism are behavioral things. All are included in what can be called “social struggles”. This is the biggest feature of autism which causes us difficulty.

1 “Social deficits/ emotional response” is abnormal. There will usually be difficulty in understanding the way social ‘give and take’ in conversations works. The autistic person might give mini lectures, or answer other’s questions with simple yes or no instead of seeking to promote back and forth social conversation. We may not be interested in what another is saying, thinks, or is doing… and fail to interact, when common social standards would expect that “give and take” conversation to take place.

We may not be aware of other’s attempts to interact with us or we may avoid those attempts, or we may not recognize signs that others wish to avoid us. We may not react with emotional responses where it would be more common or even expected to do so. ( things like congratulating somebody who announced good news, or saying “I’m sorry” to somebody who announces sad or bad news)

2. ” Deficits in non verbal communication” We may not express thoughts, ideas, emotions through words or actions. We may not recognize when others express these things in words or behavior. It is as though we can not “read” the person’s body language or their facial expressions. We miss a lot of social cues… and we fail to give the cues others expect of us. One of the things that is often commented on as a symptom is that eye contact seems to be uncomfortable for many autistic people, and many, especially when young, will tend to avoid making eye contact, or if eye contact is made, it is not “held”. It also seems that many adults may have been extremely uncomfortable with eye contact as children, but have learned to use it to some extent as we age.

It appears to be a common misconception that all autistic folk avoid eye contact, and that this will not change. Offers to shake hands or motions inviting one to take a seat may not be noticed, and likewise may not be used in interactions with others. etc. It is my own belief that most of these social body language cues can be learned and performed. Some with autism may find it impossible to very difficult, as we all are individuals.

3. ” Does not adjust behavior to fit circumstances”. Unless we are taught otherwise, we approach the world and everything in it on one level. We many times may not pick up on the fact that we need to be quieter in the library than at the gym. We may not behave differently at a funeral than we do at a birthday party. Somehow we seem to have difficulty picking up on the subtle differences in situations. I believe this is simply not intuitive on the part of many autistic people, but can certainly be learned.

We may prefer to be alone and be completely uninterested in in what others are doing or thinking. We may have difficulty in many cases playing games or doing things that involve anything “pretend”.

Many older people have learned how to overcome these deficits through past experience and sometimes therapy. We learn how to “mask” the natural traits and to ‘work around’ them to some extent, but I believe it may be very difficult for us to be so intensively alert to see and act on social cues.. what is perceived and assimilated and acted on by those without autism comes to us through focused effort and vigilance. Social interactions can be very difficult and stressful to many of us, though we might be good at performing the expected social basics. What might be a simple trip to the store or doctor office might be completely exhausting and stressful to an autistic person.

Finding direction

When I began learning about autism, I simply felt a huge relief to finally understand so much of my past, how it happened and why. In looking at events from the past, mostly unsuccessful interactions with other people, which caused emotional and sometimes physical pain, fear, and frustration, I was able to see how autism prevented me from understanding them, and them from understanding me. That was incredibly overwhelming, changing my understanding of everything in my world, and shifting it to a new perspective. I am still taking “baby steps” in my understanding and am continually amazed at how deeply entwined autism features are in all of my life, every part!

I have decided that for those of us who are older,( lets just draw an arbitrary line at chronological age 60), it is much more difficult. Many, if not most of us, have had no idea about our autism and have lived our lives as social outcasts, believing that what was happening to us was somehow our fault. We were faulty because we didn’t ‘get it’ and couldn’t do things that seemed to come so easily to others. We have been the nerds, the weirdos, the socially unacceptable geeks, the “odd ducks” and often also the brilliant and quirky genius sitting at the back of the room and coming up with solutions to problems that escape others. We have often been mocked, bullied, ostracized, belittled, and we carry the pain of not knowing why with us. Depression is frequently experienced by autistic folk, is it any wonder why? Anxiety seems almost universal among autistic people. If I kept doing things wrong, and being punished or criticized, but never knowing how to fix what I am told is wrong, is it any wonder I am ( we are) anxious? I am going to record my thoughts, feelings, and struggles as I go forward from self discovery of my autism, to trying to find somebody who will recognize the true diagnosis of the old lady with autism.

It would not matter to me if I stayed with self diagnosis, because I am quite satisfied with understanding within myself, and finally knowing the answer to almost every one of those “why” questions I had for most of my life. Here is the thing, though. I wish with all my heart that others who are still struggling and hurting deeply because they do not have the secret word: autism…. could be helped. In society today, one’s credibility depends on documentation… you must be certified by others… to drive a car, to act in many professions ( physician, lawyer, weather forecaster, engineer, ok- you get it) . If I want to be my best as an advocate for autistic people who are undiscovered and hurting needlessly, I can’t go out in the public sphere and say “Listen to me, I think I might have autism, and I want to tell you about it.” can I? You can imagine the response, can’t you? But if I say, ” I am autistic, I have been diagnosed as autistic, and I might be able to tell you a few things about it” I have that credibility… the socially acknowledged experts have pronounced me autistic. I have a certificate! No rolled eyes, no sighs, snickers, and shaking heads, it is there, proven; I have that paper that gives me credibility. My search for credibility has begun. This is an ongoing story.

Finding out 2

When reading autistic adult’s blogs, I learned the names of authors which some recommended, and also found that many of the bloggers went from blogging to writing books, so I was able to find a bit of help there. I continue to search for new authors and new studies being done, and all the blogs I follow give me clues. Amazon .com and other online resources , including private publishers are beginning to come up with an amazing amount of information. They have realized that we are out here, and are beginning to respond to the requests for more information. Here is a sort of capsule list of some of the things I learned about autism in older adults. It does not show up quite the same as in children. Many of us have learned to adapt, compensate, adjust, and camouflage our autistic traits. It might not be immediately obvious to others that we are “on the spectrum”.

Autism in the United States no longer has Asperger’s to define higher functioning autism. The diagnosis criteria allow the choice of 4 various levels of autistic function, based on how much support the diagnosed person needs. Level one is considered highest functioning, and those diagnosed may need little support in most areas of life, but still may require some adjustments to workplaces or living arrangements. See “DSM autism diagnosis” in any search feature (Google, MSN, etc) for more info. Other countries use Asperger’s as a diagnostic classification still. It gets confusing if you are discussing Autism with people from other countries.

I learned that Autism has 3 main features used when diagnosing.

Number One : Difficulty with social interactions.

Two : Difficulty reading non verbal social cues

Three: Difficulty in having and keeping relationships with others, or lack of interest in doing so.

I will discuss these in more detail soon. There is a lot more diagnostic criteria:

  1. Repetitive or stereotypical movement, speech, behaviors

2. Lack of flexibility- any of these; insisting on sameness in clothing, arrangement of furniture, food eaten, daytime or night time routines, saying the same phrases or word in certain circumstances, echolalia (repeating words after somebody) for example.

3. Strongly focused interests or desire to focus only on a few specific interests and activities, repeatedly returning to these and the focus is ‘abnormally intense’

4. Highly sensitive to sensory input, or almost oblivious to it, or both… light sensitivity, reacting strongly to images or noises or to physical contact, for example. Or getting injured and not noticing, some people might insist on wearing the same clothing winter and summer and not noticing the heat or cold, for example. Unusual or extreme reaction on either end of sensory issues may be an autistic feature.

If you are reminded of your own self while reading these, yes, maybe you are autistic, too.

Research on the internet.

I began to search the internet to find out more regarding older people and started searching for professional papers regarding diagnosis over 60… there is very little out there. I did find a huge category of books about autism, most aimed at people with kids and how to tell if they might need a diagnosis… explaining childhood traits, etc. I came across some pages which were questionable, and soon learned that autism, like everything else dealing with human beings, has its political side. Did you know you could “take a stand” on autism and the issues surrounding it… diagnosis, treatment, origins , name and classification of the condition, etc. ???

The world of blogging autistic folks is fascinating to me because there is nothing ‘between’ the stories we tell and the person who reads the blog. No analysis by professionals regarding traits and behaviors, how we see things, how we feel about things. The stereotype perception of many uninformed people is that autistic traits are static and can not go through changes as a person ages, or that new skills to cope with challenges can not be learned. There seems to be a stereotype that autistic persons are never able to be sympathetic or caring. Another stereotype is that most autistic people never fully function in the world, as workers in all strata of employment, as partners, as parents… and reading personal blogs destroys all of these assumptions.


Finding out

Once I suspected I was autistic, I began to research online resources with special interest in older adults with autism. I found some surprising statistics. The CDC estimates today from studies done in 2015 and published in 2018, that autism is present in 1 or 2 out 59 people. Of those people 3 out of 4 will be male. Autism was originally described to be only found in males, and it is believed by many that the diagnostic criteria may need to be changed to include traits of autistic women, which are being found to differ from those of males. Autism diagnostic criteria (DSM) as it stands today has been used only since 2013, with varying other tests being used before that date. First time Autism was on the list for diagnosis as its own diagnosis in the USA was 1980 when it was listed as “infantile autism”, removed from its previous category under forms of schizophrenia.

My biggest question : Weren’t there autistic people before it was officially recognized and sought as a diagnosis beginning with infants in 1980? What happened to all the adults ? Autism certainly didn’t just ‘appear’ .