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 to 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)

Autism after adult diagnosis

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!

Making progress?

Autism diagnosis and ageing adults blog

I missed it, passed the 200th post in this blog!!!!

We are entering the 4th year of the blog and just celebrated our 3 years since my diagnosis anniversary.

The format for these posts puts the most recent entry on top, so to read the whole thing in chronological order, you will have to scroll to the last entry and read backwards! This will be the 209th post .

If you find the information here useful would you be so kind as to share the address?

It seems urgent that autistic adults ageing in frustration and confusion and emotional pain be found so they too can finally experience the relief of having answers to all those painful “why” questions of the past.

I am feeling as if I am running out of time. Old age is creeping up and poor health is looming… I want to try to reach as many older adults as possible to inform about diagnosis of autism even in the latest stages of our lives. There is no way to measure the difference in self understanding diagnosis can make!

I know how much help it has been to know my diagnosis and how much my self understanding and understanding of others has grown from this new perspective. I know how much diagnosis has helped me improve my every day living through making so many adjustments and self accommodations, being able to see old problems “with new understanding” I wish this for others who have lived all their lives without knowing about their own autism.

I have been able to mostly overcome the many struggles and hurts, damage due to trauma, and for so many years simply not understanding just about “everything” due to my autism.

It has been such a relief to learn everything was not, after all, “all my fault” . I have learned new ways to “work around” the autism struggles I have to find new ways to live a better life with less frustration, struggle and discomfort. I have made a new network of friends, I have begun to live my “best life ever” since I finally found out about my autism.

Although diagnosis does not change a thing about our unevenly developed neurologies, it allows us to have the understanding we need to move forward with our lives and to make adjustments to all sorts of things which used to give us struggles… self accommodation is possible in many ways, once we know about our autism.

This blog was established as a sort of “adult training wheels” or beginners collection of info about the nature of autism itself, about the vocabulary, the neurology, the social struggles, rigid thinking, and repetetive behaviors that we all must have in order to be diagnosed as “actually autistic”. I wanted people new to autism to have explanations I was finding all in one spot, not to have to hunt all over the internet, the library, etc. to glean bits and pieces of information as I have been doing since I first suspected my autism6 years ago.

The blog is about how we can find diagnosis and then adjust our lives once we learn about our autism, even in very old age .

I hope you find what you need!

Please look on Facebook for “Autism for Older Adults” a public informational study group page about diagnosis, autism’s core features, and adjusting to diagnosis as an older adult.

There are lots of links and discussions about these things as well as references to studies, articles, groups, the latest autism information, and more. Some of the blog posts are referenced and re printed there as explanation, too.

Still feeling hopeful about the future as science learns more about autism and we obtain diagnosis and adjust to new and better lives because we have done so. as January 2023 draws to a close, may I wish you a better new year.

Becoming a victim Autism

autism and being a target

Autism and vulnerability, autism and trusting nature, autism in old age, autism as targets of crime.

I probably have your attention now!

Statistics from internet sources confirm that autistic individuals report being victims of crime more frequently than the general population.

There is much speculation about why this may be so. Those with autism become easy targets once our trust is gained, and since for many of us, our “social radar” and ability to detect hidden motives is poor, we can be tricked, conned, lied to, manipulated, pressured and intimidated into situations that others may more easily be able to avoid.

One way we can help ourselves to stay safe and be less likely to become victims is to learn about the types of crime and how we can spot it, protect ourselves, what measures we can take to be safer in public and or at home, this includes the internet and email/ forums/ things like dating services, social groups, and any interactions we may have with others.

Especially as we grow older, we become focus of predators who may want to use us for their own benefit. Younger people need to watch more for sexual predators and how they may be placing themselves in jeopardy physically. As we grow older, adults need to watch for those who want access to our bank accounts, credit cards, household valuables, the drugs we may take to alleviate pain in our poor health as we age, and the multiple ways scammers use to access us and play upon our lack of social skills, lack of self confidence, our trusting ways being usually non suspicious by nature, etc are amazing.

Simply being aware that there are predators “out there” may not be enough! Learning about the ways they work can help us spot unlikely behavior and questionable motives.

Home improvement scams and home help scams : Predators gain access to your home and may present you with what seems like “cheap” help , fix a roof or paint the house, put in new steps or drive/walk? Sign this contract, and oh, by the way I need at least half of this in cash as an advance .

Dating and romance: sometimes people pretend to be romantic interests in order to get you to give them money. I just need $$$ because I need surgery, my son is disabled and needs an operation. I’ll by the engagement ring but I don’t have enough for the deposit, I need money to complete school when I graduate I can fly to you. I need money for rent, for tickets to fly to meet you, for helping my poor granny…. any plea for money online or the phone before you have ever met somebody “in person” (or even after) especially if they promise love love love and tell you repeatedly after only a short period of contact how much they care about you… that should set of huge alarm bells.

Photos of the handsome/ beautiful person you are talking to are not likely to be the actual individual. No matter how lonely you are, no matter how much you want companionship or a partner…. think it through. Can you find them in city/state/records or other places on the internet as proof of their actual claims (address, phone number, employnent history, tax or voting records?) Romance scams may be the most painful of all. Guard your heart and your finances.

Need somebody to clean or cook or help take care of household needs or personal things such as toileting and bathing/ dressing? Watch them go through your things and take what they want, including what may be in the medicine cabinet . They may give hints that they are poor and needy and ask for loans, ask for forwarding of salary and then deny they recieved it and demand payment. Might want reimbursement for things they claim you asked them to purchase (food, meds, something for cleaning, car care, etc) Might want to bring a friend to visit … might look through your personal files to see what your financial status is, steal checks or pass books, ask you to sign papers and try to keep you from reading and understanding what they say.

The best thing you can do is talk to others to learn how these scams and theft are done. The internet can help, sometimes senior centers or police departments can help with instruction or more information.
Your local librarian may be able to help you find more information, and of course there’s always the internet.

Phone scams: somebody calls claiming to be a relative in jail, medicare, your bank, your doctors office or pharmacy, your credit card company. Anybody who asks for information about your bank account number or your credit card number is probably fraud. Tell them you will call them back, hang up and call your bank, etc yourself from the numbers on your own records (don’t use recall feature or phone ID number from which you received the call)

Internet scams: Beware of

People who post sad stories about needing money for medical bills, dental work, their mission work, home fire, family problems, etc. wanting money to find a lost family member or a lost pet. Wanting you to give your money to them for any sad reason at all. even If you have lost a pet and somebody claims to have found it, or another lost item and says they are far away and need money to return the lost item. Postage, shipping, travel expenses?

Somebody who sees you are a golden person with a good heart, a beautiful smile, how much they love your posts, but they are not anybody you ever interacted with before. Be my friend, I am so glad I found you!!!! beware!!!!

People with good deals especially for you. Just send a deposit for shipping , handling, taxes (you have won the lottery!!!!) etc.

Emails from a foreign prince telling you he needs your help… ( this has become a joke, but some people must have fallen for it at some time because the scam in many forms still exists and if it had failed and was not profitable, predators would have changed their methods)

Surveys on the phone or on line: Can gather huge amounts of information about personal possessions or habits, security measures, bank accounts and investments,

Do educate yourself on the ways fraud and theft happen especially to older folks. We might not have learned about personal safety when we were young, but we can do our best to protect ourselves in our older age by learning basic safety not only for our personal well being but also how to protect ourselves against the sea of metaphorical sharks “out there” who would like nothing better than to have access to our homes, our savings, our possessions, our health and credit records, etc etc. You have it in your power to prevent these things from happening.

If you feel inadequate to do your own research, reach out to social service agencies, the police, your local senior center, the library, or trusted others to help you get the information you need to protect you life and assets from predators. Autism may make us more vulnerable, but we can help ourselves to see beyond the friendly voice, the smiling face, the helpful “friend”… I hope this sets us to thinking about finding new ways to be safe as we age.

After Adult diagnosis

It is never too late !

Reports of older adults finding diagnosis are becoming more frequent.
Many elder adults suddenly discover that they have spent a life time working to understand

WHY they have always struggled socially, Why it seems so hard to do social things that others seem to do naturally and easily. Make friends? Mix and fit into a social group? Be comfortable in social situations from school, meetings at work, group gatherings of family, or for business purposes, or while participating in clubs, societies, organizations, church or worship activities, or simply being around a lot of others.

WHY it seems so difficult to understand the motives of others, explain yourself and your intentions or thoughts, to find “common ground” and to seamlessly without awkwardness negotiate any interaction with anybody at all?

WHY it is so difficult to deal with sounds, scents, sights, the sensory feelings of doing daily things that others never comment on and seem to do with ease and comfort?

Why doing physical things have always been difficult, being called accident prone, clumsy, thoughtless or careless all our lives?

Why we have always struggled with so many things others seem to do with ease, been awkward and difficult and “outsiders”, and being the focus of struggles, blamed in any and seemingly every distressed situation, even among family and those who know us best?

Suddenly so many things begin to make sense! Our neurology is different and makes many things in live much more difficult for us! ( Nobody knew! What a relief! Now what????)

Adjusting to this new insight and the perspective it brings to the past, our present situations, and our ideas about the future can be overwhelming. Sorting out everything we have known and thought we understood from this new perspective can leave us shaken, upset, disoriented, confused, and full of re-lived emotional pain and well as suddenly grieving our old selves and understanding so many things about our expectations and limitations. So much to sort and understand. So much to learn, so much might change!

We can find many ways to help ourselves at this time.
Knowing our diagnosis can help us get in touch with others who may also be autistic. we can seek support of professionals in sorting emotions, finding help or aid for struggles with jobs, housing, food, or medical struggles such as addiction or other health issues. We begin to see how autism had its works in everything all our lives, amazing! Everything was not, after all, “all our fault” but autism had its works going on without anybody knowing or suspecting. Nobody knew!!!!

There are so many support groups available in so many places, either “in person” or on line. It has been a huge relief to understand that I am not alone but that there are many others who understand, and who have lived experience and insights and suggestions that can help me in many ways.

WE can seek insights into our past and learn about the ways we “self adjusted” to cope with our hurts and struggles. Many of us have spent a life time mis understanding what healthy choices and healthy living, both physically and mentally and emotionally can do for us. We may never have considered we could make other choices than those we learned as young people in frequently unhealthy family/group situations.

A therapist, psychologist, counselor, or social worker can be helpful to show us where we have the opportunity to work our lives differently, make healthier choices, have better and healthier communication with others, learn new life skills that will be less painful and more helpful going forward.

Knowing ourselves seems to be one of the best things that come with diagnosis. Self understanding is so important and so many of us have been so busy defending ourselves and avoiding and hiding from our struggles, trying to hide hurt and misunderstanding so much!!!

WE may not have thought ourselves important enough to take the time to do the work of self understanding, we might have tried and given up in despair at finding ways to change anything at all in our lives.

Something that can help tremendously is to know how autism works in us and to be able to see how much it affects us every day in so many ways.

This may take some time to discover, but the more we seek information about autism in general and learn how others arrange their lives in healthier ways around their own autism, the better we can understand ourselves and see how so much information can apply to our own self.

There are an abundance of books, blogs, audio podcasts, videos and memes available.
There are tons of support groups on the internet and in “real life” in many places.

Start with local, county or state associations and ask for referral or information.

You can do this by email, phone, or on line, or in person.

If what you find is not helpful or comfortable, keep trying!

There are so many opportunities to get information and support today. You may have to spend some time in getting experience with “real time” groups and interactions to find something helpful and comfortable for you. Please keep seeking information and asking questions. There are so many ways we can get information and support today. We have choices and alternatives!

“AHA” moments happen frequently as we suddenly see how some of our quirks, struggles, behavior, emotions, joys all fit into the ways autism can work inside of us. Behind “aha” comes self forgiveness and often forgiveness of others. Nobody knew!

First of all learn as much as you can about autism and see how it personally fits patterns of your life.

Second seek others who can help you understand autism and explain and support you in the hardest parts of your emotional homework. It is a lot to sort, and the longer we have lived, the more we have to examine and understand from this new perspective.
Others can offer insights. experience, explanations, and make suggestions sometimes when we are at a loss to figure something out.

Third practice your best self care right now. Life will be upset, emotions a whirlwind and others around you may also be feeling overwhelmed and lost, may have to adjust to this new perspective and the ways you will want to change life from what it has been to what it “can be”.

Make sure you are patient and kind to yourself and others as you all go through it, get enough rest and proper nutrition, etc. You are worthy of finding peace and self forgiveness, forgiveness from and for others, and you are worthy of finding the best ways to go forward as you (all) adjust to the new perspective of diagnosis of autism.

See also “tools we can use” posts elsewhere in these pages.

Happy new year to all, may it be the best and brightest yet!

Autism as disability

my autism is NOT a gift or a simple difference, not an “alternative” I would ever choose.

Yesterday was a mixed bag of experiences, overwhelmed by the loud Christmas music my husband delights in playing this time of year, I figured out that the booming base was what was the most triggering of my anxiety and was able to lower the setting so that I could cope.

I was working next door in the kitchen and the base was simply overwhelming while my poor audio processing garbled all the vocals and left me scrambling to try to keep up with the tempo of the constant change of tunes. This is difficult to explain if you have not experienced it… sound can be simply overwhelming in many ways.
I did better after adjusting the volume and especially the bass settings to very very low.

At lunch my husband spent a lot of time explaining the setup of a “new to him” comedy he has begun watching on TV and really enjoying . His delight at the setup and the performances was so evident!

It was hard to keep the multiple characters sorted in my mind, lots of players in this program.

I generally do not watch TV because the audio and visual input are usually way too quick and my understanding and processing of images gets left way behind.
I confuse characters as soon as the set changes, the location of the characters or the costumes change. (prosopagnosia does not help here!).

I feel I miss out on so much and I see how much pleasure he gets out of some of these programs. Let alone the enjoyment we could otherwise share by doing something together, even as simple as watching his favorite tv programs.
So when spouse invited me to watch his program, meaning to share the fun with me, I agreed.
I would love to spend more time with him and it was so obviously important to him that I appreciate this!
I was able to watch about 7 to 10 minutes of it before I became completely motion sick.

The camera did quick switch and focus for every interchange of the many characters as they spoke.
I had to keep asking spouse for explanations of what the characters were doing, which one was which, etc etc.
I had to beg spouse to excuse me and forgive me, I felt physically sick and growing sicker, nausea, dizziness, headache…growing worse by the minute, although I could see and appreciate his enjoyment of the program.
He was kind and understanding and I don’t think he was hurt or offended since he does understand my perception problems . I think we were both disappointed.

I went to my quiet nest ( recliner in the bedroom where I sleep far away from the TV) and I began to recover and then began to read, but felt overwhelming sadness at the fact that I must be so limited in so many things that might help our relationship build strength and develop deeper companionship and understanding. I have missed so much over the years! We have missed so much!

I was sad, am still sad, for all the missed input I lose by not being able to process videos, movies, tv programs, etc and all the ways that I could have to share time and pleasurable experiences with my partner and others through shared activities.

My inability to process visual activities and sounds related to entertainment and education leaves me far behind many people who use these venues daily with never a thought.

Yes, that is a true disability. Not understanding or being able to keep up with what is happening in “real time” or using these things to enhance and share experiences with others is truly difficult and when I stop to think about it, and I can see so completely the many ways this inability is a huge loss of opportunities, insights, information and shared experiences.

I am stopped, blocked, frustrated, sad and sometimes so very sorry for my personal losses due to my sensory processing problems. I do try not to dwell on things that can’t be changed, but sometimes I am forced to notice how very “different” I am.
Yes, I am disabled . There, I said it!

Today I went to the Facebook page I moderate/admin and somebody had put a huge video up about how ” autism is not a disability, it is just a difference”. I took it down. This is a political football that some autism activists are pushing in many media formats today. You can find multiple posts, arguments and discussions all over the internet. Is autism a disability?
Take a look and decide for yourself.

When I am so different that I must find ways to keep from being physically and emotionally distressed, being both sick and overwhelmed, when I must ask for help to be understood and ask for accommodations for helping me be accepted, to communicate, and to function satisfactorily in ways that others may be able to take for granted, I do not see how in the world this is just “alternative neurology” and NOT a disability.
Perhaps others have more imagination. I simply can not find a way to appreciate that “just different” thing. There is way more to it than that simple dismissive statement.

The videos and writings of this sort are so frustrating and humiliating, they declare loudly that “we are not disabled”, then ask for special attention and accommodations because they are so very different. but it is just an alternative neurology, not something that we struggle mightily with every day in so many ways where others do the same things completely and easily, fully naturally without special setups, supports, accommodations, tools and accessories, special training, programs, etc etc etc.
I think of the autistic individuals who are brothers and sisters of my heart and soul who have so many more struggles than I do, so many really intense problems from intellectual disabilities, inability to speak, or read, or write, I could name a thousand ways so many of us struggle every minute of our lives with our simply different neurologies, no its not simple at all.

Nope, this does not compute. People of all abilities and neurologies deserve respect and compassion, kindness in an ideal world would always prevail.
But to deny that our disabilities are not disabilities at all is to deny our struggles, our painful interactions, our difficulties in doing what comes naturally and more easily to others, and to deny our existence and our histories, our painful interactions of the past, and the very difficult passage through our lives that so many autistic individuals have all our days on earth. That denial is so painful and distressing on so many levels!!!!

My autism is a disability every single day.

I can’t be the only one who experiences autism in this way, even though our individual neurological struggles may be very different.