Emotions and Autism

Sorting or recognizing emotions is something not addressed too often in discussions about autism, yet I see it as being one of the most troubling features of my autism for most of my life.

I am not sure how my emotions got so tangled. How much was due to the dysfunction of our family, and my position in the dynamics? How much was due to the autistic inability to recognize the emotional state of others? I was dependent on others to explain the world to me, and for the most part the explanations I got ( or at least the way i understood the explanations- which were few) were wrong. If I assimilated the explanations I was given and applied them, it ( my perceptions of these explanations ) just dug me deeper into confusion. I really had no idea about emotions, how to identify them, and what they actually meant.

Autism confused me further… when I believed I grasped a concept or a rule, inflexibility did not allow me to see I might not have understood “the rules” after all. I held that rule fast to my heart and mind because I understood somehow that there were rules and I needed to follow them, and the better I learned the rules, the less trouble I would be in, the less angry people would be with me, the less I would be scolded or spanked or scorned or ridiculed. There was safety in being able to cling to a rule. Of course my autistic perceptions were inaccurate, and incomplete. My understanding of explanations was literal, my concepts of ‘the way the world is” were drastically skewed.

So it is no wonder that the world of emotions, which I did not perceive in others until i brought their wrath down around me, was left behind in my search to understand how to avoid the complications by learning the rules. My emotions were not useful, other’s emotions were not clearly understood and the dynamics of what things activate emotions was for the most part very unclear to me. I was told over and over that I was rude, unfeeling, selfish, thoughtless, etc… but nobody ever explained in what ways or how I was ‘being’ all of those things. I was told over and over “you should know”… but that did not show or explain to me how I “should know”, nor yet the specifics of what I “should know” and how to apply that knowledge to whatever situation it was I was in that got me into perpetual trouble.

It was not until I became suicidal and finally found a good counselor that I began to figure out emotional dynamics, both other people’s and my own. I had no idea I was autistic at age 30, that understanding finally arrived at age 66, but mean time the therapist I worked with was able to point out several misunderstandings in my thinking. He taught me to be healthily self assertive… but before I could be self assertive, I had to know what I needed and wanted. I had always tried to please others and appease/prevent their aggression and anger, but never had looked at trying to figure out who I was or what I needed, what I thought about any topic, what I wanted. I went from such family dynamics into a married state that duplicated the patterns at home, only perhaps escalated the severity of the problems in patterns that existed. During that time the therapist encouraged me to write. I had been in the habit of writing long apologetic letters to people whenever they were upset with me. The therapist somehow could see that for me the written word, and writing was my best form of understanding, communication, and self expression.
He assigned me books about making healthy choices and how to have effective and healthy communications to read, and asked me to write about my problems.

This was such an illuminative experience! What most people probably learn in their early teens, I was learning for the first time as a 30 year old adult. It was freeing! When I read back the things I wrote ( I wrote letters which i never sent to the individuals who I had struggles with) I began to understand what my problems were… and the therapist was able to point out how I could choose to respond in different ways to those problems.
Among other things, I had to learn to recognize anger in myself and to express it. I had to learn how to say NO to people instead of bending over backwards and going far out of my way to please them. Family member or complete stranger, I was the servant and the doormat and the “please don’t be angry or aggressive with me, I will do anything to avoid that” person. Think of Archie Bunker’s Edith and you will have a small idea.
I still have to resist this tendency in every day life and measure in my mind exactly what is reasonable and sane for me to do as opposed to simply responding with”yes” to avoid any discomfort.

I had to learn to recognize frustration, sadness, shock/surprise and understand how these emotions could be acknowledged and expressed as well.

I learned communication tools and how to use them. I had empathy/sympathy when others’ pain was explained to me, but had (and still have) struggles with recognizing distress or anger or other emotions in others.
I am better at trying to put myself in people’s places , endlessly comparing in my mind their current experience to any previous experience I may have had to get a clue to what they may be thinking or feeling as I interact with them.

This seems to be something “neurotypical”( non autistic) people know without working at it, they are able to perceive emotion and understand its significance as if by instinct. I still am not good at this, but I have better skills with practice 37 years after the counselor than I had as a child and young adult.

In struggles for everyday function, my emotions tend to get shoved to the background and not recognized or acknowledged until they build into ‘overload’. Then it all comes out. I have got much better at recognizing the first hints of emotions in myself and paying attention to them, and if and when I can do that, I might be able to better respond to a situation instead of its building until I fall apart.

I have to say that going to that therapist was the hardest thing I have ever done. It was also the best thing I ever did in making my life better and easier for myself. I have so much more understanding than I did before.

I have lived with fear and anxiety as being my 2 predominant emotions for most of my life. Certainly in those days, they were the only emotions I deeply experienced on an every day level. Never knowing when you are going to get punished for ‘doing wrong’ and never knowing when or understanding why it happened are powerful motivators to be anxious and worried. As I have got more practice and made better choices , and now especially since I understand that my autism caused so many misunderstandings, and how that worked, my anxiety is leaving me, and I am rarely bothered by depression.

I think both anxiety and depression were because I was helpless in my former roles with no way to avoid the emotional and physical pain.
I learned how to recognize my emotions and how to change my behavior patterns by making better choices. But first I had to recognize that I had the power to choose.

Accommodations for autism?

” I don’t need accommodations”. I actually thought this for a moment or two, but then

After thinking it over, I realized I have all sorts of accommodations built into my living arrangements and routines. My husband accounts for a ‘natural fit’, having an “engineer brain” where he needs everything orderly and his schedule predictable to function at his best. Spouse has all sorts of things arranged a certain way. I naturally fell into his way of doing things long ago, because it worked for me too. Everything has a place where it belongs (our household belongings). If I replace something where it does not belong, I am reminded it does not belong there ( this is fairly frequent and sometimes stressful for both of us ).
We fell into the habit of cleaning every Saturday morning early in our 39 year relationship because we both worked on Monday Through Friday schedules. We still clean on Saturday mornings.
We share the chores of doing dishes, alternating days, I do them one day, he the next. He takes on the extra day… I do all the laundry, odd household jobs, washing floors, (cat care, feeding, doing litter box duty, cleaning the yard of dog waste, taking the pets to the vet) he mows and maintains the house, shovels snow, manages the check book, and cares for the car. We each have roles that are comfortable for us, and we rarely step out of those roles. Predictable routine! You saw that, right?
We schedule any deviation from this by using our calendar (Dr appointments, planned trips, planned visitors, etc) No surprises.
I choose my clothing for comfort and utility. Nobody else controls my wardrobe, nobody else influences my choices. ( NO uniforms, no requirements to dress a certain way for the office or other conducting of business, no pressure from spouse or companions to dress in certain ways.)

I go to my little work area in the basement or to read in the bedroom with a shut door during the times he plays the radio, watches TV , or DVDs . I have a special place for all my rock and fossil collections, my crafts, my plant hobby, my aquariums, and they stay in those areas. ( I guarantee they are not as organized as the parallel spaces alotted for my husband’s interests!)
Having a spouse with a craving for order has been a blessing, because he provides the structure and stability which I lack in my own organization skills.

My retreat from the radio and video/DVDs/television to my favorite nest ( recliner with fuzzy blankets) has been ongoing when I realized many years ago how upsetting most visuals/ and associated sounds are for me. He loves his movies and TV programs and in fairness I can’t ask him to stop listening and watching.

I have a craft closet and a work spot in the basement, my aquariums for my ongoing study of guppy genetics, and also my gardening as escapes whenever I need solitude or quiet. I go to the woods or the lake shores I love.
I have earplugs which I use when I can hear noises such as the neighbors’ loud radio when they sit outside on their patio or sun themselves by the pool. I am grateful that I am able to control my surroundings and schedule.

What is it like for older autistic people in care homes, dependent on others to arrange small things like lighting, food choices, temperature, sounds heard, comfort of clothing, bedding, arrangement of furniture, daily schedule, etc??? Every one of these things is so important to my senses in every day life!

Many of my struggles eased when I became able to make decisions like this for myself. I am so grateful that my present is more conducive to comfort and safety/ stability than my former lives. What can we do to make life more tolerable for those autistic people who are not as lucky/blessed/fortunate/ situated/ accommodated as I am?

Remembering the work days and my first marriage, all the social demands, the ‘eating out’ with other couples or co workers, the attempts at being in step with fashion and keeping up with news reports, discussions of current events, pressure to do things like join the company softball league or bowling team…. all gone. Fear and anxiety and desire to escape were constant and unending. I was always sick with headaches and stomach aches, overwhelmed and both misunderstood and misunderstanding.

I have already adapted and made my own accommodations. Even unknowing about the autism, I was able to find ways to cope with the symptoms of sensory and emotional overload. So fortunate!
Retirement is the best accommodation of all. I struggled with bullying and unstated/in completely understood or unclearly expressed or implicit and misunderstood expectations in almost every interaction with others.

Anxiety produced by going to work provided plenty of energy to accomplish things; I almost never disappointed in work performance, but co worker relationships were pure misery. Not understanding why this was so was an added burden. Self doubt, self blame, self hate. Why couldn’t I fix it??? What a relief to not have those every day stresses. Retirement removes all of that and allows me to follow inclination to research on the internet and in books, explore nature, choose my companions or choose not to have any.
My anxiety is leaving me gradually as I understand more about my autism, but also in my realization that I am ‘safe’ for the most part from the bullying and stresses of my work day. Of course I realize that quitting your job is not an option for most of us. The stress of finding a job that is tolerable and that we are able to perform, and still brings in enough income to afford housing and food is real, and unavoidable. I spent 49 years working, most of us will do the same to survive.
My improvement in my life and level of stress are due to the accommodations I hit upon accidentally, but that work very well for me in my current situation and my new understanding of my needs (something I really never gave much thought to before).

Diagnosis older Autism

Awareness of autism is rising and not a moment too soon.

So many adults with autism are walking around with no diagnosis and little understanding of the condition, due simply to the fact that little was known about Asperger’s/autism when we were young. Only the most severe cases of autism were sought and diagnosed until perhaps the last 15 to 20 years, depending on your location in the world. In other places, autism is still not recognized or diagnosed at all.

We will recognize ourselves ( autistic people) as feeling confused, frustrated, angry, and socially outcast almost in perpetuity, with little rest between any of these. There seems to be little peace to be found in our lives and our struggle to understand most things in our world is real.

Our earliest memories may be of emotionally and physically traumatic experiences due to our inability to process emotional or physical input or stimuli. ( overload of senses and the poor ability to process socially related things is frequent, even before we have words to describe these things)

We do not understand what the world wants from us and why we seem to be unable to do things most of us know intuitively (even before society tells us in many ways) we ‘should’ be able to do. We are frequently castigated, punished and shamed for this disability and struggle to find ways to avoid the negative feedback and to perform as is obviously expected, but so difficult to achieve. Punishment and emotional pain seem unavoidable and this can lead to despair as well as anxiety.

Many of us will have found the world overwhelming and have developed self protective habits as a way to cope. We will avoid social situations, preferring self isolating activities and the quiet and relative safety of a place to hide.

When participating in family routines as youngsters, even when older, we will often be at the center of family disagreements and upsets. Misunderstandings will be frequent and emotional displays will be unpredictable. Many times we simply don’t “get it”.

We usually prefer not to be interrupted in our activities, routines, or in speaking to others.

We seem to lack humor and understanding of nuance. There is usually nothing subtle about autism, it is ‘full on’ full time. We have no sense of timing and frequently no sense of what behavior is appropriate. We have to be told our behavior is inappropriate (and usually we are mortified!).

We are often unaware of how “different” we are in behavior or beliefs, or in the way we dress and act. Some of us become good at copying these nuances. This is sometimes called “masking”. It is changing oneself to fit in without perhaps understanding fully why it helps one to “fit in”.

We are frequently oblivious to other’s feelings and desires, and we usually can not tell when what we are doing or saying is making others uncomfortable.

When told we have caused dismay, distress, discomfort, we are usually upset, because it was not our intention to do so. To an extent, we can learn to be more aware of others, but we often miss social cues that would be obvious to others in spite of our good intentions.

The idea of cold-hearted uncaring autistic people is generally a mis-perception. If we know we cause hurt, discomfort, frustration, or sadness in others, and are informed as such, we are surprised and remorseful. I am convinced that most of us have every bit as much compassion and caring as NT folk, but we are less likely to pick up cues that tell us another person’s thoughts and feelings (we have to have it explained to us). We might not show it, but the feelings are there, and as intense as any other person’s.

We are often poor at sorting feelings out, and worse at finding ways to express them. This is part of autistic differences in mental/emotional processing, and not deliberate callousness on our part.

We are usually known to be odd, quirky, or eccentric, sometimes highly intelligent, sometimes simply “out of it”.

Like anybody else, our skills or interests will vary in intensity and content, but frequently we will have just a few very intense interests in things that seem to be of narrow and restricted topics. Our knowledge of these interests and involvement in them may exceed all other things in depth and enthusiasm.

We may not be “well rounded” in this way, knowing or caring little for much outside that which we are involved in, and often have impatience with others’ interests which are different from our own.

We will have been accused of overreacting to injuries, temperature, sounds, motion, shadows, lighting, things we see or feel through touch or in our emotion. Because of differences in neurological processes, we in truth can be hyper-sensitive, or in some cases have no sensitivity at all to the senses of taste, sight, sound, smell, and touch. It is not ‘all in our heads’ but is as real as any feeling NT people feel, but simply outside the ranges of intensity of what is “normal”.

We may have meltdowns with frustration and feeling overwhelmed with emotions or sensory input, which we find we can not regulate or process at given times. Sometimes our attempts to control this input or to process ideas or emotions will seem rude, violent, extreme, unusual, or odd.

We will tend to self- comfort in many ways: pacing, walking, twitching or spinning, jumping, repeated picking at body parts, twirling hair, chewing nails, tapping fingers or toes, working something with our hands, rubbing hands or other noticeable “different” behaviors.

Some of us may self- harm, or abuse drugs and or alcohol, in attempt to escape the overwhelming anxiety and depression which often presents itself as a result of our inability to cope with our world.

We may lack impulse control, saying or blurting out our thoughts or doing something as soon as it enters our mind, thus being accused of inappropriate behavior frequently.

We may over eat or eat something obsessively in exclusion of much else.

We may prefer one set of clothing to all others, or read or listen to music or watch the same book or movie over and over.

Anybody can have some of these traits, any autistic person may not have them all, or even have more than a few of them. There are many other ways to spot autism, or to suspect it in an older adult you interact with. If you find yourself recognizing Grandma or Aunt Lucy, or Uncle Mike, your elderly sister or the old guy who sits on his porch rocking in his rocker every day from exactly 2 to 5…. undiagnosed autism might just explain some of those odd mannerisms, quirky behaviors, lack of social competence, and their outlook on the world around them.

Autism strengths

I’ve written a lot about struggles in autism. Those are ever present and they are real. Something perhaps less understood are some of the strengths or good traits often found among autistic people.

Powers of observation and pattern recognition are very strongly oriented toward details in many autistic people. Neurotypical/average everyday people tend to see the big picture immediately and to add details once they perceive the concept. Autistic people tend to focus on the details and add them together to build the entire picture from assembling the details. This probably takes longer in most cases, but knowledge gained seems to be in depth and thorough. In this, we are able to spot things that ordinarily might be missed. Troubleshooting of all sorts is appealing because it involves solving a puzzle. Most of us are inordinately curious. “Why” is almost a mantra for most of us. We want to pick things apart and understand the least/smallest things about them. Many autistic people love the challenge of sorting out problems. Many of us have excellent long term memories, many are able to visualize concepts in a very detailed way. We also are known for our “perseveration” which can translate several ways… continual interest in something, continual ‘working it over in the mind’ on issues long since past and over, and in super ability to focus on one task and stubbornly follow the course set ( our son says I am willful) until the goal is accomplished. Indeed we can be extremely single minded over ideas and perceptions. This is not to say that all of us (autistic folk) are like this. Some of us do not have a single one of these traits (gifts, or curses). I am not able to visualize a thing, for example. We might make excellent researchers, engineers, IT workers…librarians, accountants, math related, mechanics, electricians, any place detailed analysis of anything is needed, autistic attention to detail pays off.

Most autistic folk are extremely compassionate and care deeply. This seems to fly in the face of the autistic stereotype often discussed as unemotional and cold, unresponsive to others needs and uncaring. The stereotype is simply not true! The problem lies in perception of emotional issues and perspectives… if we do not perceive distress in others we do not react to it. If it is explained why distress is experienced or pointed out that a person is upset or emotionally hurting, many autistic persons will feel very deep emotions and empathy/sympathy. We often do not show our emotions, we are simply not ‘wired’ to make emotional displays under most circumstances. This seems to be something that comes naturally and spontaneously to neurotypical people.

Because we may not show/express our emotions on the outside, it does not mean we do not feel them within. Autistic people can feel quite passionately about today’s issues and will persist in championing a cause with heart and soul.

For many autistic people, reason and facts dominate emotion. This means we may not respond in the usual emotional (distressed, panic, fear,anger, dismay) fashion under stressful conditions, such as emergencies- fire, accidents, injuries, crisis situations. We may be able to more quickly see the details in what has happened and what needs to be carried out immediately without the spontaneous emotional response typical in the average population. For this reason we may make good workers in the medical professions, especially rescue and emergency doctors, nurses, EMTs, fireman, etc. .

Again I would like to emphasize that these traits are not common to all autistic people, just as traits, skills, gifts, or abilities of any person will vary, so do those of autistic people.