Autism Twice Exceptional

2E have you heard of this?

Yesterday I heard a new term to add to my autism vocabulary.
“Twice exceptional individual”.

I had never heard of this before, although I have figured out that I fall into this category!

Twice exceptional as definition of a group of individuals evidently came about in the late 1990s when educators began to see that some gifted individuals also struggled with autism, add/adhd , or other neuro-biological diagnoses. The common use of this term began around 2015 when several studies were done to help define struggles of those with intellectual gifts but also having learning struggles of any other sort.

Included in this group are physically handicapped, or any “otherwise able” diagnosed persons, those with neurological or mental disorders, etc. ASD,ADHD/ADD dyslexia, bipolar , on and on.

The second part of the 2 , in “twice exceptional” is that these individuals are also gifted in some way or ways that make accelerated learning or programs desirable.

Because of the first part of the 2E, the diagnoses, many individuals struggle through school and need extra social support, extra encouragement, extra accommodations to help them get the most out of the accelerated classes they participate in.

Thinking about this “new” category of individuals, I recognized myself at once.

I have tested very very high in things about words… vocabulary, comprehension, language use, etc. but I also have struggled all my life to learn or interact through things like lectures, demonstrations, movies, etc.
I did not learn until very late in life with thorough neuro-psychological testing in attempt to find out if I was autistic- that I have sensory processing problems.

With only 25th percentile visual processing capabilities and 35th percentile audio processing, I am truly learning impaired, although nobody knew or understood it while I was of school age.

My vision is poor without glasses and with them I do much better, test in the average category. My hearing has tested as being acute, with ability to pick up very low and very high ranges outside “normal” or average hearing. Seeing only my failures, my parents, family members, educators, etc, my lack of performance in the educational arena was solely due to me not paying attention, not trying hard enough, being lazy, etc. I alone was at fault for my failure to perform.
This has been the mantra chanted at me all my life until my diagnosis at age 68. It is your fault you fail repeatedly, its your fault you fail socially, in performance of tasks, in relationships, in so many other ways. You should do so much better, you are lazy, you just don’t care, you aren’t trying hard enough. That shaming and blaming attitude shaped my world, and I could not help believing what they said was true, but I cried over and over “but I don’t know how” when told to shape up, get my act together, do better, stop feeling sorry for myself, get with it, pay attention, try harder…. The pain is still there just under the surface. It is a raw and bruised, bleeding sore that has sort of scabbed over, there is even scar tissue building, but once in a while the scab gets knocked off again and the sore, the wound, the hurt is still there. It probably always will be.

It has been such a relief to let go of that burden and to see that autism was at work behind the scenes without anybody knowing or suspecting.

In junior high after testing, I was moved to an accelerated learning program. I did well at first but soon flagged and failed, and at the end of just one semester was placed in the “slowest of the slow” classes. Humiliation and public failure, shaming, and mockery included on all fronts. “guess you’re not so smart after all”

Everything was all my fault, once again (as usual).

I went into deep depression, what we know today as “shutdown” and truly gave up even small attempts at trying to learn or perform at school.
That slump lasted from 7th grade through my sophomore year at high school.
I wonder how things might have been different if we had that interesting educational category to define my “special needs” back then.

The cautionary ‘moral to the story’ is that if a student is not doing well at school even though they test high and seem to have no physical deficits, perhaps there is more “going on” beneath the surface and more investigation about the way that individual processes information may be needed. Don’t go the “shame and blame” route until all possible other reasons for “failure to perform” are completely ruled out. If you have never “performed to expectations” perhaps sensory processing struggles are hidden in plain sight, and testing can help you too. It is never too late for self understanding and self accommodation! Diagnosis can make such a huge difference in even elderly adults’ lives. (Ask me how I know! )

Autism and being lonely

Is feeling lonely as an autistic any different than the neurotypical experience?

It is the height of summer in northern Michigan here in the USA. Yesterday was the 4th of July, and it is a huge birthday party for the country all over. There are traditional get togethers, family camp outs, cook outs, beach parties, boating parties, baseball games, volleyball games, sand castle building, swimming, and loads of other summer activities, followed by huge displays of fireworks in every city. small or large.

We have a small home in a small community on Lake Huron. We live only 2 blocks from a public park with a beach. The park is the location of the “official” city fireworks, so very early in the day people begin to gather in the park. by noon, the side streets in this are are filled with cars of people going to the park.

My husband loves to walk on the beach and watch! I go with him each year to look at the sand castles built for a traditional contest. We pick our way through the crowds of folks , some old, some young, some single, some couples, some families. A wide range of people of all shapes and sizes, all doing some summer activity right there in the midst of many many others doing similar things. ( I guess except for the group one is with- this must be a form of parallel play?)
It crossed my mind to wonder why people enjoy this, with so much noise, so much chaos, so much physical discomfort. Of course I know they must experience it quite differently than I do.

So, I want to tie this in with feeling lonely.

I read so many articles and studies, reports, blogs, and the like, and have been trying to remember the lonely feelings I experienced particularly badly in my youth.
I now believe that it was not lonely as in longing for companionship, but lonely as in longing for acceptance and approval.

I think there is a difference!

Now I know myself to be autistic and I understand myself so much better, I am starting to pick out some threads that were constant in my past. I always felt rejected and felt at though people were angry or disgusted with me as a matter of course. This had a basis in reality.

I was physically repugnant due to a severe case of acne which left my face inflamed and many people could not bear to look at me (this from about age 10 through high school and early 20s). During that time I had little guidance other than corrections and criticisms from family. I did not learn social nuances or good manners, did not learn many things I could have been taught. I did not have good examples to follow.
I was only told what NOT to do, told I was bad or wrong, and punished repeatedly in many ways. I was desperate for acceptance and approval. If I had felt loved and accepted I doubt I would have felt “lonely ” at all. Here I am at age 72, finally figuring out things that most folks probably do in their teens? Even earlier in life? ( I am amazed at my life and my experiences and so grateful to finally, even at this last stage of life to be putting the pieces together. )

I think of being lonely as longing for companionship and interactions with others. Longing to be present in company of others, longing to socialize, communicate, joke, play, do activities together with others. Am I wrong?

Feeling accepted and approved of as part of society, whether family or out and about and doing solitary activities goes deeper. Humans are “herd animals” and everybody wants to be part of the herd, even if on the edges or at the bottom of the ( it is very real!) pecking order.
Those of us who the herd rejects are indeed lonely, but in a way that those who are part of the herd will perhaps never know or experience.

Today I see myself as part of the herd, although I am lowly status and on the very edge of the herd. People say “good morning” , sometimes somebody will hold a door open for me if we are passing at an entry or an exit. People look at my face when they speak to me. People sometimes even joke with me while we wait in an elevator, a long line queued up for some service, a waiting room. I am seen! I am accepted perhaps not as part of any social circle, but I am part of the herd.
That is the part of me that was so lonely when I was young, that was the part of me that hurt unbearably early in my life.

That was what I had hoped and prayed for in the lonely years.

Autism’s version of “lonely” is perhaps different than the average human’s “lonely”. At least it was, for me.

Adjusting to recent autism diagnosis

a few things can make the adjustment easier

adjusting to our new understanding: 5 things that might help!

Finding out we are autistic throws “everything” we thought we knew and understood about our selves, others, our past, our nature, our lives right up until we are finally diagnosed late in our lives, into new perspective.

Suddenly learning how autism has been working within us all these years without our knowing can be stunning, disconcerting, upsetting, exciting, a huge relief and also a huge disappointment causing grief for our past self, time we now see as lost, and shaking us to the core because of new self perceptions.

The longer we have gone without knowing our diagnosis, the more there is to sort!

Here are things I have figured out that helped me through the rough days following my self identification and 3 years later professional confirmation of my autism diagnosis.

Learn as much as you can about autism: This helps with self understanding , we can figure out exactly what our neurology is doing through autism, figure out our best strengths and help support our worst weaknesses, once we understand our own neurological “wiring”.

Books, blogs, online videos, articles from groups and organizations, reading studies “about” autism can help us see ourselves both as we are now and as we were in childhood, young adulthood, middle age, etc. Knowing more helps us understand all those “whys” of our lives, helps us see ways we can make our current lives better by making adjustments in the way we do things every day. Information is power we can use !

Find emotional and social support : There are many online autism support groups, they can be local or international, the culture and intent of each group will be different and you may have to try several over time to find a group that is right for you. There are groups for parents, groups for those with multiple diagnoses, groups for gender identities, groups for those with autistic parents, groups for those who do not speak, for those with interests in certain topics, etc.

Joining such a group provides support and assurance that we are not alone, that others have gone through similar struggles, had similar issues, needed certain specific explanations, and reassurance that if they have got through this, you can too!

These support groups are generally especially for problem solving and asking questions about personal struggles. They are generally private, closed groups, so you may have to sign in. sign up, agree to abide by the group rules and stay within the group guidelines. It might take several tries to find your on line home, but it is worth it!

Where else would we find insights and experience, and the combined years of wisdom got from living autistic lives to help us find solutions to our problems? If we live in a higher populated area there are also often local “in person” support groups , which again feature special focus on support, information, recreation, specific age groups or other limits and rules we will need to be aware of.

Seek counseling or therapy:: if we have emotional pain or struggles with anger, self injuring behavior, addictions, eating disorders, multiple diagnoses, destructive behaviors around food or other bad habits or if we have constant depression or anxiety. We can figure out where we can change things.

Living a life of distress and frustration, filled with misunderstandings and emotional hardships seems to be more likely than not for most adults who have made it to old age before discovering our autism.

We may have learned to cope with our struggles in many unhealthy ways. Therapy can teach us new ways to communicate, help point out things we might not have understood in our history or present lives and help us substitute healthier ways of living and “doing life”.

Due to our autistic rigidity, we may not be able to see we have choices and alternatives. We may have to try several therapists before we find one we can communicate with, but they do not have to have experience with autism, only the willingness to work with us to find solutions to our day to day struggles, our trauma, or other problems that need better solutions.

If what we are doing is not helping, we can learn to do something else instead.

There is almost always a “better way” and therapists are there to help us find those ways.

Give yourself time! It has taken all our lives to get here, it will probably take some time and lots of emotional “homework” to sort it all out with our new perspective, to figure out how to make our lives better, to find new ways to “do life” with our new understanding. Your best life starts now. Take good care of yourself, keep trying, consult others who have “been there- done that” , get advice, consider options, we will find that although our basic struggles have not changed, our ability to cope, our self understanding , our new insights to others and our own personal history will begin to grow and change as we move forward to our new lives as “actually autistic”.

Make a “safe place” or a haven, a nest, at home: . We need a place where we can refresh our minds and souls in safety and comfort. It can be a quiet corner anywhere, a special chair, a bedroom hideaway. a den, a place that is filled with things we can find comfort in.

We almost always need a refuge/retreat or a sheltered space where we can re charge our emotional and physical “batteries” after a hard day, an argument, a meltdown, any upset. The nature of autism makes this important for self regulation and self care. You can make mini-safe places while on the road, at the office or workplace, and find new ways to give yourself comfort and escape or rest when you need it. Try brainstorming with others in your household, group, or those online problem solving forums. The ideas that others have come up with can be so useful!

Wrong Planet

that feeling that you don’t belong

So many autistic individuals report feeling that they were born in the wrong time, the wrong body, the wrong place. We are not comfortable where we are or being who we are. We explain to ourselves that we would have done better somewhere else, or in another time. “strangers in a strange land” Misunderstood, misunderstanding, unhappy in sensory overload of bright lights, noises, too much hustle, and a thousand other things that others around us seem to cope with competently and without discomfort.

This seems to be one form of “imposter syndrome” where we feel we are not what we are expected to be, playing a role, not actually what we are defined as by others or seen as being even within ourselves.

I had this all my life, too. Until my self understanding and diagnosis of my autism, I always thought I would have done better in another age or state of being. When I learned about my autism, my perspective changed and I had the long sought answer to that question of why? Why did I never “fit in”? Why was I unable to do so many of the things that people expected of me? Why was I uncomfortable in so many situations that others handled with ease?
The answer was Autism. My sensory processing was “off” in timing and my perceptions were skewed in so many ways. I had no idea! Nobody else suspected either! No wonder I was confused, frustrated, angry, hurt , so frequently.
Are you feeling like an outsider? Are you frustrated and confused or physically uncomfortable in situations that others take as a matter of course? Are you blamed constantly for doing things intentionally when you had no thought or intent such as others label you with? If life seems to have been exceptionally difficult for you, emotionally painful for you, and you have struggled where others seem to do things easily, take a bit of time and see if Autism might be the answer for you too!

Autism adjustments

We can choose how to live better lives after diagnosis

Suddenly everything begins to make sense! All of the “whys” of our past, our misunderstandings of what happened, ideas about who did what and why, beliefs about our histories, our families, our experiences and our own self concept are shaken and shifted to the very core of our being.

Knowing how autism acted in almost all parts of our lives and how own behavior, thoughts, actions, and beliefs have always been affected ( since birth!) by autism is validating, upsetting, a relief, a sad disappointment, a painful and exultant discovery for many of us. One dominant emotion may keep us involved for months, hours, weeks, days… we turn it this way and that looking at our pasts, others, our selves , and work out how it “really was” or “really is”.

I can hardly describe all the changes my mind and emotions have gone through since I first suspected my autism.

One of the best parts of finding out I am autistic in my mid and late 60s from first suspicions to confirmation through official diagnosis, is that I have learned how to make adjustments to my life to make it better and easier for me.
I have been able to give myself permission to avoid doing social things that are distressing and difficult by changing my schedule to do “something else” instead. Instead of going to the wedding or big family party,
I am able to write a note or make a phone call saying I won’t be there on the day but that my heart will be with the celebrating person(s) and I will deliver or send a gift or a card instead.
If somebody wants to meet in a crowded restaurant, mall, or do an activity involving high levels of noise or crowds, I feel comfortable proposing something to do in a quiet setting or other peaceful location or activity.

Maybe I have to regretfully say, “sorry, I won’t be able to do that this time”, but most friends and family will forgive me. I will counter with another proposed activity at a later date, one that fits my abilities and sensory struggles better.

Schedules and activities, places to go and things to do can be changed for self accommodation once you know your personal struggles and recognize those things you can choose to do
( those which do not set off the anxiety, migraines, cause illness or strong discomfort.)

It is OK to say no to those things which are a struggle for you.

No matter what others think or say, self care must come first, and there are many ways of meeting “social obligations” without making yourself sick with stress over any proposed activity.

When we recognize our sensory struggles we can adjust our physical surroundings to help us find calm and quiet, help us do household chores, paperwork, self care and personal care, etc.
Just because grandma always used to do something a certain way does not mean you can not use any other method to do the same thing. Cook all day, bake and make everything from scratch? You don’t have to! You can buy from a deli, take carry outs home, buy pre prepared frozen dinners, go out to eat…. in almost every situation there are multiple options.

You might not have ever thought about changing things up, doing the same things or trying to force yourself to do the same things unsuccessfully over and over. (autistic rigid thinking in action there!).

Instead, if anything in your life causes constant distress, anxiety, emotional or physical overload, consider trying a different approach to accomplish any goal.

We can live better and easier lives by making changes, but first we have to recognize the things that are the most difficult for us,

Next we can give ourselves permission to do anything differently to make our lives easier and less filled with struggles. It is OK to try something different!

Autism and Medication

What about drugs for Autism?

If you are over 65, you can probably remember when there were family doctors who made house calls. You are probably aware of many of the huge changes that have taken place in medical care from the beginnings of your childhood. We live in the age of medical miracles.

We have seen the development and benefitted from a life time of life saving drugs, vaccines, better nutrition, health care, and the development of better understanding of many rare developmental conditions, syndromes, mental illnesses, help with sanitation, childbirth, genetics, neurology, and so much more.

I would be dead at least 3 times over except for the miracles of modern medicine.

So it is a reasonable question to ask : “what about medication for autism”???

There is no medication that treats autism.

Autism is present at birth and is due to irregular development of the person’s neurology (the nervous system, which includes the brain)
We are individuals with differing development of neurology, and not one of us will have exactly the same struggles or trials, strengths or weaknesses.

Today those affected by autism directly (the autistic individual) or indirectly ( concerned caretakers, parents, family, friends, spouses, etc) can look to help from medication for some of the worst problems we may have.

Those who have health problems of any sort can ask for help and referral to specialists in almost any field of medicine.

New medications are being developed for those with emotional and behavioral struggles, with seizures, with heart, circulatory, gut and digestive problems, pain, structural and physical struggles with painful conditions such as osteoporosis, arthritis, and many effects of syndromes and conditions such as Ehler Danlos or other genetic problems we may have been born with.

We can get help for lack of sleep , We can get help for gaining or losing weight and treatment for eating and digestive issues.

Although there is not a single available “autism drug”, the miracles of modern medicine are available to millions of individuals in the USA today. If you are among those millions with access to health care, please don’t simply say “I won’t take medication”. Not all medications are bad, many can be life saving and life changing.
Today there are many of us alive due to getting medical help for many, many (yes medical) conditions surrounding our autism. We can explore these options and with the help of a good doctor, explore our options for treating so many of the physical struggles that seem to go along with our autism.

As a sort of side note, the inspiration for this blog came from my recent experience with a new (to me) drug that was prescribed for my struggles with sleep. I have struggled with anxiety and depression all my life from age 8 onward. Sleep simply wouldn’t come, my anxiety has been so bad. I did not even recognize that anxiety was the basis for my sleeplessness.

Doctor tried several medications which I rejected for side effects such as painful cramps or dizzy spells which impaired my ability to do things while awake. Third try was an absolute miracle. I am finally sleeping 7 to 8 hours every night. I have no memory of how long it has been since this happened !

As a side effect, my life long anxiety and depression have abated and I realized only yesterday that I have finally found peace and for the first time in my life recognized a sense of actual well being . Amazing!!!!!!!
Truly, today’s medical prescriptive drugs can be miraculous !!!

When used carefully (responsibly following directions and wisely with the cooperation of a caring specialist), they can be aids to living a better and more productive, healthy life.

Certainly it is a choice available to many. Don’t rule medications/ drugs out of your life simply because you fear possible side effects. There are also life and sanity saving benefits to many medications available today.

Autism and Learned Helplessness

Negative response to our struggles and trauma

Have you heard about “learned helplessness”???
It is not something that happens only to autistic individuals, but can happen to anybody

“Learned helplessness” comes about when we begin to believe that no matter what we do or what we try, we will not be able to change our lives, our circumstances, our selves, or any situation we may find ourselves in.

Autism fills our lives with sensory challenges and struggles. Our responses can be those responses to trauma, fight, flight, freezing, or fawning.

Over time we may develop a negative thinking pattern, that says “what is the use? I can’t get out of this situation” “what is the use? I just can’t do what they expect me to do”!

This negative thinking can become deeply embedded in our daily lives, our responses to almost any challenge. We may give up trying, completely, especially in cases where we are overwhelmed.
People who are abused often develop learned helplessness as a response to physical and emotional abuse. We have all heard of many cases where an abused person refuses to leave a partner because they believe they are helpless to stop the abuse or change their situations. Abused children can develop unhealthy patterns of behavior in reaction to continual abuse as well.

Think of the multiple ways in which an autistic individual might fail where the general population does not. We have many more “opportunities” for failure every day.

Autism predisposes us to negative experiences through continual bullying, intimidation, childhood training using strong negative reinforcement such as spanking, humiliation, punishment for unintended mistakes, etc. We struggle with mistaken understandings, sensory overwhelm and overload, poor coordination, poor understanding of the intent of others, and frequently we lack insights into task performance and problem solving which may be obvious to others.

We soon learn to wait to be told what to do rather than take initiative. We soon learn to become apathetic. No matter what, we will be criticized, scolded, mocked, bullied, hurt physically, we will fail and fail and fail. Do you relate to these struggles? Many autistic individuals probably will!

I have been reading about learned helplessness and am amazed at the comments from psychologists and therapists saying that almost all autistic individuals they have worked with have had some form of learned helplessness.

Individuals with learning disabilities may have parents and caretakers who just “do it” for them because they struggle and are slow with whatever is asked of them.

Individuals with perceptive struggles may have the same problem.

I don’t do it right, exasperated caretaker, partner, parent, etc etc either writes me off or punishes me, taking over and “showing us” by doing ” it ” (the chore, the skill, the task assigned or expected) themselves how easy the action is and shaming us, punishing us, and even more deeply convincing us that we are inept, stupid, useless, a loser, a bad and willful person , etc. No wonder we give up!

Depression can have its roots in learned helplessness. Can you understand why this may be so?

We may give up on trying to do those things that are hardest for us. We develop a negative mindset. “what is the use of trying”. We resist challenges, we break down, refuse to even try. One more scolding or punishment averted!

“learned helplessness” is something we get from being constantly overwhelmed, when we feel absolutely powerless to stop whatever negative thing is happening to us and when we simply give up trying.

Thinking back on your childhood, youth and life before discovering your autism, can you discover a pattern of hopelessness, helplessness, or overwhelm that set your mind to believing that you will never succeed at whatever you tried, that you became so overwhelmed that you stopped trying?

I can think of many instances in my own life where this was so. I had a very strong negative attitude to myself first, and to all parts of life.

I found out about learned helplessness in counseling which I got at age 30, I needed to have somebody explain to me that I had alternatives to the fixed patterns and beliefs of my early life.

I was able to learn through being taught, that I could choose to respond to others in any situation in many ways, rather than the rigid learned responses I had been conditioned to in all my earlier life experiences.

I needed to learn that I do indeed have multiple choices in almost every situation and every part of my life.

If you suspect you might be one of those who learned to give up, please reach out and ask for help. It is never too late to learn new ways of thinking, to see and learn new ways of doing life.

I was so lucky to get counseling at age 30 to learn new life skills that made my life so much better. Even though I did not get my autism diagnosis until I was 68, in therapy I got every day life skills and tools I could use to make life better.

I repeatedly tell people that therapy saved my life and my sanity. If you are living your life in misery and emotional pain, please reach out to find a therapist to work with.

Learn that you have choices to make and take the emotionally very scary chance to live a better life when you let go of your learned helplessness burden and learn to fly!

Autism Accommodations

Self accommodations you might not have thought about.

There are lots of suggestions for self accommodations on line. Things like ear plugs and other sound protective devices, dark glasses, fidget toys, sensory things like adjusting temperature, the kind of clothing we wear. We have access to special sound systems, things such as special furniture, special diets, special selected therapies.

We can surround ourselves with conditions that give us the most comfort and the least distress (changing lighting, special blankets or special diets, how to set up sensory friendly spaces, etc etc.
While these are great and can be extremely useful depending on our struggles, I want to suggest something else that might not be evident at first.

Have you thought about changing your routines or changing the way you do every day things in your life to give you less stress and less pressure. We can change things that trouble us about our social struggles too! One of the best things I was able to do for myself was to excuse myself from participating in large gatherings of any sort. I have been able to adjust my self expectation (and family or friends social pressure) to allow for my deep struggles to do things “in real time” with others, especially in large groups or in loud public places.

A family vacation at a resort which has planned activities would be a nightmare. A family party for individuals for weddings, birthdays, promotions/graduations or any other reason either in the individuals home or at a fancy restaurant always has me with a huge headache leading to vomiting from the stress/distress.

Instead I have learned that I can adjust my schedule and avoid the distress these situations cause by writing a note, Sending a gift, giving a telephone call, or doing a brief one on one visit or having the celebrant over for a quiet dinner at home and explaining that I have already made other plans but that I will be wishing them well on their special day. This applies to funerals, wakes, and memorial gatherings too.

I have given recognition to the special occasion and the special celebrating individual/s and they will not miss my personal presence when surrounded by teeming noisy others who are actually present for the big event.

Going to the store can be helped by home delivery services.

Going to the doctor or dentist can be helped by advance planning for accommodations such as being allowed to wait in the exam room or being called from your vehicle by cell phone when they are ready for you rather than waiting in a crowded “waiting room”.

Things that you hate doing around the house, like cleaning, cooking, laundry, etc can be tackled in similar ways. You can bathe without taking a shower or a bath, for example, by washing your hair and face in the sink, washing yourself with damp cloths or using wipe/on/wipe off lotions. There are dry shampoos and many ways to clean and maintain hair and skin, too.

WE can change the cleaning routines we use if we think through the things we hate most and make adjustments for them. There are probably a hundred ways we can do routine cleaning chores, using different products and going about it in different ways.

We don’t have to cook, ever! There are so many meals completely prepared in the freezer sections of most stores, so many foods available today from the store deli or from carry out places.

Self accommodation is possible for almost every “every day living” activity.

Think it through. How can you change the things that are difficult/ that you hate to make the activity easier and less difficult?

Self accommodation is not about only changing our environment and our tools but also adjusting our routines and activities to make life better for ourselves every day.

Autism and Emotions

Why is recognizing and sorting emotions so hard???

Of all the things I have learned about autism, this is one I struggle with the most.

As a child I was trained to instant obedience and punished if I cried or resisted any direction at any time. I learned to be silent, obedient, and that my feelings and opinions did not matter.

Over time the lesson was repeated endlessly and I was fawning and appeasing, fearing the next round of punishment for things I only began to understand in my early teens.

Without insights and intuitive responses to the physical body language, words, thoughts of others, I simply waited in deep anxiety and fear for the next instructions telling me where I should be, how I should think, what ( they said) I meant when I behaved differently than “they” wanted me to. ( see “learned helplessness” )

I was labeled as willful, mean, spiteful, and I eventually became those things as I tried to understand and defend myself from what seemed to me as unfair treatment in so many ways.

I avoided contact with others, avoided doing things with others, rarely approached others, but waited and hoped they would approach me.

Any attempts at self initiated contact was met with failure repeatedly. ( see rejection sensitive dysphoria, it becomes a self fulfilling negative behavior pattern)

I got therapy at age 30 which helped tremendously with communication and started me on a path of positive thinking.

I have struggled to sort my emotions under layers of self protective resistance. I had to learn to recognize anger, how to get angry, how to direct it in healthy ways. I had to learn to recognize sadness, and I learned that the predominant emotion in me all my life has been fear.

Fear I would do or say the wrong thing, fear I could not cope or handle any situation I might get into. Fear about interacting with others, fear about being physically assaulted. I still struggle with fear and anxiety all these years later although I know logically that I am not in physical danger and have not been for many years.

Knowing about my autism has helped tremendously, and I learned that the struggle to sort emotions is a common one. I wonder how much of our struggles are because we misunderstood everything from an early age and nobody explained about our emotions and how we use them, as well as the significance to our selves of every emotion???

I believe I can get better at sorting my emotions, that I have got better over time, and my current “project” is to see if I can find happiness. So far that emotion eludes me.

I can find peace sometimes, even feel content.
I rarely experience what I understand as joy, and happiness is simply going under my radar or not present.

I have found a new book about “finding happiness as an autistic adult” and am reading it with interest, but also with deep dismay.

I find the “exercises” described by the therapist who wrote the book upsetting and difficult.
I wonder if this is simply because I was programmed by childhood training to fear having emotions and to block them out like a good little robot?

I wondered after reading the first few pages, if the therapist/psychologist/ author is NT?
I am struggling with many of the concepts and the ideas behind them and this is upsetting too, since struggling to understand written words in not something I experience often.

She does seem to understand the idea that “happiness” is going to be very different for most autistic people compared to the neurotypical (NT) idea of what makes people happy.

This is going to be the year of emotions for me. I have recently joined a writing group to see if I can improve what I post here, make it better. The leader of the group seems to want us to find and express emotions, and maybe that will help.

I can’t help thinking about how late I am coming to all of these things, and how grateful I am that I found out about my autism and can make sense now, of so many of the painful “whys” of the past. What a relief!

I am so lucky to have the time and opportunity to do so. I think with sadness of all those like me who grew into old age never understanding, and who may yet be in pain and filled with struggles, never knowing the key . Autism explains so much. I hope you find what you need.

Autism first or Person First?

Why are we arguing about this?

Whenever there are 2 or more people in a room, there are politics. Humans tend to disagree and have independent opinions on many subjects. There has been a trend here in the USA to
suppress and “shout down” those who disagree with many ideas.

Autism as a topic is just as loaded with disagreements as any other topic.
I am constantly getting hostile email and comments from those who disagree with my flexible use of either “title ” for those who are autistic. I have autism, I am autistic. There is a lot of strong feeling in both camps.

It is obvious to me that the two perspectives will range from moderate to extreme, but I find the closed mindedness of those who camp at the far side of each of these opinions exasperating.

Shouting at me, “correcting and ‘explaining’ how wrong I am for using these expressions ” does not help, it merely causes friction and tension. Fighting about how we use words in expressing our ideas of self identity seems pointless since changing the word does not necessarily change my opinion or thought process.

Over 50 years ago there was a folk story that “went around” about self ( racial in this story) identity.

A child went to school in a new district and was introduced to classmates as Lisa , and since she was of a skin color much different from most of her classmates, was asked what term she wanted to be called, “afro american, person of color, Black????”

She said she preferred to be called Lisa.

Substitute any group or identity having this experience.

Don’t forget there is a person there under that label you want to choose for somebody else.

There is plenty of room for all of us to go our own way without getting angry about the names and identities I choose for myself, even if you strongly disagree.

Why are we fighting about this??? ( rhetorical question)