Autism Awareness

April is autism awareness month!

But every day is autism awareness for some of us. Many are acutely aware of our struggles daily.

I spend most of my time trying to either gain/learn information or to share information about autism, especially in older adults. I repeat my encouragement to share any information on these pages, to reprint or post any of my comments freely. I don’t claim copyright, use them in any way you can to promote awareness and understanding of autism. Just don’t claim my words as your own.
Please share.

Every day should be autism awareness day.

Over 5 million autistic adults in the USA may not be aware of their diagnosis because nobody “was” aware of autism during the times we grew up.

Losing my mind

Alzheimer’s, ,dementia, Parkinsonism, “old timer’s” diseases and autism

I am running out of time. Sometimes it feels very urgent to get my goals accomplished now, before the inevitable struggles with old age catch up to a point where I am overwhelmed.
There seems to be extra urgency for me because my family has a history of dementia/ Alzheimer’s/hardening of the arteries, loss of mental ability among its women.
I did a lot of family history study when my children were small. I noticed a pattern then of suicides among young women up until age 30, and of men over 50 in one family branch. I also learned that women of that same family group were often sent to sheltered care type institutions because they were not able to be cared for at home due to mental deterioration/ loss of function.

I will be 70 this year. Most women who needed care were lost by their mid 70’s, many earlier than that. I may be lucky and avoid that seemingly genetic “thing”.

Health care is much better than in previous generations, as is knowledge of nutrition, self care, and many other contributing factors. Medications for heart and blood pressure problems, and stroke prevention and to help many other common conditons may also play a part in prevention.

I am wary though!
Each time I can’t recall a fact, each time I misplace my keys or forget why I walked into a room, I wonder if I am experiencing signs of mental deterioration.
Never mind that I have been a bit of a “scatterbrain” all my life. That seems to have taken on a new significance now I am getting older.

I understand now that my mother was autistic, and I saw that some of her diagnosis of dementia came from the way she behaved as an autistic. Many of her neurological struggles existed from childhood.
Studies have shown that in some people, Autism mimics stroke injuries in the prefrontal part of the brain. I wonder today how much of my mother’s autistic characteristics were assumed to be brain damage due to stroke. She had tremors which for years were not understood, being diagnosed differently by each specialist she saw. Some said “essential tremor”
some said “parkinson disease” Some said stroke damage… maybe the actual diagnosis is not important, the result was that she was put on strong drugs to control the parkinsons, some of which almost killed her, some of which seem to have had worse side effects than the tremors alone. I was not able to care for her at home. She was not capable of supported living housing, she ended up spending the last years of her life in a mental care/dementia unit of a nursing home.
The emotional pain, constant grief, and worry was continual. I carry tremendous guilt and feelings of failure over my mother’s situation.

I am fearful as well.
I worry I will end up in an institution like my mother.

I worry about being a burden to those I love. I think about what I can do now to try to avoid those things. Self care has never been more important. A long life of bad habits has slowly been changed to healthier behavior. I don’t have any idea if it will do any good, but doing healthier things will at least not harm me.

Does your family have a pattern of health issues ? Do most family members die of heart attack, stroke, diabetes, cancer, or other health issues? Are you looking into what things you can do right now to help yourself live a healthier life with better chances of staying independent or needing less care?

I urge you to look into ways you can change your health now, for a better future as you age.
You will be buying time with those you love, helping yourself be independent as you age, and improving your health and well being if you make self care part of your plans for the future, no matter how much time you might have left. ( we never know, do we, in spite of clues from the past?)

Make sure right now your loved ones know what you would like in case of sudden need for care, and make sure that those you care about are cherished, enjoyed, and loved for whatever time we have left, and what ever the future brings.

Get READY now

What if there is an emergency?

Recent events have been on my mind lately. A good friend spent hours watching firefighters battle a huge blaze in an apartment complex across the street. An area the size of a city block was lost. All the people who lived there lost their homes and belongings. Certain surrounding areas had to be evacuated as well. Others were put on “standby” alerts.

People in the state where I live lost everything when an old dam burst and allowed water from the recreational lake it had created to inundate the subdivision and part of the large sized city just downstream from that location.
People who lived there lost their homes and belongings. Somebody I knew there was without utilities, including water and sewer for several days as the area began to recover.

There are chemical spills, forest and urban fires, floods, earthquakes, violent damaging storms, civil unrest, and many other reasons why people must suddenly leave their homes , evacuate certain areas, and try to begin new lives in places that are strange to them.

Do you have plans for such an emergency? Now is the best time to think about it, as terrifying as it might be.
Emergencies do happen in every part of the world, every day.

Our autistic inflexibility can be an extra problem for us in emergency situations. We can be so shocked by rapidly threatening events that we become ‘frozen’ and unable to act for ourselves. We may not be able to do the things that need to be done quickly in such an emergency if we have not planned and thought about what we would do and made certain things ready “just in case”.

The flood issue struck close to home. We live in an area close to one of the Great Lakes in the USA, and there is a river through the heart of town, much beloved, tamed by no less than 4 dams in regions above town and in the middle of town as well. If one of those dams broke, would/could the others follow? The government agency that inspects the dams says they are reaching the end of their span of usefulness and they are not completely stable. I have been thinking about what we would do here, if there was a flood situation and we had to be evacuated.
We have important papers we would need to take with us. We do not have a trailer or access to one to bring large items with us. By the time we got our files, our pets, our clothing and medications, food and water for 3 days, sleeping bags, etc. we still would have to find a safe place to go, figure out a safe route to get there, and figure out how to proceed to live our lives from there.
I am making a check list and gathering things we might need into one area of our home, and packing up what I can ahead of time.

Something that might help you think about emergency preparedness is the usa government website ready.gov What possible threats are most likely to cause emergency evacuations near you?

I began to prepare for emergencies even before I knew of my autism. I lived in an earthquake prone area in the south of my home state and there had been a lot of publicity about “the big one” – a huge earthquake being possible on a nearby extended-area fault zone which had been inactive for well over a hundred years. I had small children and the stories of possible damage worried me. So I began preparations.

I packed an emergency bag for each family member, one complete change of clothing plus a couple extra socks and underwear, and shoes. Shoes are so important in case of night time evacuations and possibilities of having to walk in areas with broken glass, damaged buildings, down trees, etc..

I remembered to pack clothing that could be used as night clothes in a public sleeping situation. I packed a towel, washcloth, toothbrush, toothpaste, etc in the emergency bags (these were backpacks). I packed a comfort toy and non perishable snacks in the kids’ bags.

I packed a bag for the pets with collars/ harnesses/ leads, dishes, food enough for 3 days. I packed the contact number for the vet and included letters for “permission for emergency treatment” as well as all health records for the critters.

I packed food and water for 3 days for each family member as well.
I made sure we had copies of our birth certificates, our social security numbers, emergency phone numbers (family, friends, etc we would need to contact in case of emergencies , doctors numbers, health records, records of all the places we paid our household bills, so we could terminate service, ask for extensions or help restoring services, tax records, etc.
Insurance cards and copies of plans plus contact numbers went into the bags, as well as all the contact numbers and account numbers for the bank, credit cards, etc etc.
I got extra prescription drugs for family members and put those in the bags too. I had a little first aid kit and a small radio that ran on batteries, flashlights and extra batteries. I had sleeping bags and blankets and pillows stacked and ready to pick up and put in the car.

I began to be very conscious about the level of gas in my car’s tank.
If we had to evacuate I had seen the television and news articles showing long lines with waits for gas and people’s cars abandoned by the side of the road due to running out of fuel.

Especially if you live in areas that are prone to ‘weather events’ or known hazards, please consider giving yourself a huge advantage by insuring you are ready ahead of time as well as you can be.
Emergencies can happen at any time. They happen to everybody.
Being older and autistic does not mean we can not give ourselves the accommodation of being ready to react and save precious time and perhaps our own and /or our loved ones’ lives.
I do not dwell on scary thoughts surrounding these “what if” scenarios, but I have peace of mind knowing I will know what to do if the time ever comes that I am called on to act and react quickly for safety and well being of my household.
Do you need an emergency plan? How will you respond?

Who am I ???

Finding your authentic self after diagnosis

There has been much discussion lately, in the online forums I attend , about masking and finding one’s own identity.
How to drop the mask and be more authentic? How to know who I really am beneath all the adaptive and self protective behaviors I have learned over my lifetime? How do I know which parts are “real” and which parts are camouflage for self protection or ease of coping?

I was at a loss for a long time about these questions. For me a lot of these questions did not apply because as I had aged, I had adjusted my style of dress, my social behavior, my willingness to put up with discomfort, etc.
I had become more authentic to myself for the most part before I learned of my autism.

It might be a process of ageing that we become less willing to put up with social and physical discomfort or meaningless rituals or distressing social situations, or I might have been lucky to have sorted out sources of discomfort and to have allowed myself to discard those things that were most difficult and distressing to me.

I understand the need to sort it all out, and to self accommodate in order to have the best experiences that life has to offer and to eliminate pain and discomfort where we can.

May I suggest we start with the things that we find most difficult and distressing? By figuring out different ways to do things, we can eliminate at least some of the things that are hardest for us to tolerate.

I learned to avoid physical discomfort first. Stopped spending hours on clothing, hair, makeup, and worrying about being “in style” or if I looked right. Flat shoes, loose fitting clothing, easy hair cut, minimal makeup applied only for very special times. Works for me! Even within dress codes, unless a certain specific uniform is required, there is usually some leeway.

I got rid of the scratchy couch that I could not bear to sit on, the bright flickering fluorescent lights. When I lived alone I did not use TV or Radio. I now remove myself to my quiet zone if my husband wants to participate in things that drive me wild (TV and Radio for example).
I have bright clear lighting that doesn’t flicker in places where I need it for reading and close work.
I stopped forcing myself to go to concerts, listening to podcasts or videos, trying to interact in large groups (4 or more is a large group to me), stopped going to restaurants, shopping malls, and other places that caused my sensory struggles to make me anxious and put me in ‘stampede mode”. What was the point?
If things like wedding receptions, anniversary parties, retirement parties, etc send you into panic or meltdown, consider a congratulatory card, note, email, or phone call along with polite regrets.
( you don’t have to explain, just say you are sorry you missed their big day but wanted to send congratulations or whatever message you’d like to give).

I found new ways to get a lot of things done, adapting them to my sensory struggles so that I no longer suffered loud noises, chaotic surroundings, etc.

In replacing those old painful experiences I found joy in solitary walks in nature, taking photographs, doing crafts, listening to my choice of music (peaceful or upbeat and not dissonant, no lyrics since I can’t readily process spoken or sung words), I found the ‘real’ me.

I lost a lot of anxiety and anguish by simply declining invitations to loud parties, noisy social gatherings such as dinners in restaurants, classrooms, malls, etc and substituting meeting with one or 2 people for quiet shared activities.

It may require others in your life to make adjustments too, or you might need to compromise to keep peace, but I urge you to find your most distressing activities and find ways to eliminate them or change them to things that provide pleasure or at least reduce discomfort.

Change clothing, change shopping habits, change the way you socialize or interact with others, change decor or arrangements within your home to accommodate your worst struggles. Many of us have it in our power to make adjustments that can make life so much better. You do not have to do anything one certain way, or in many cases you might not have to do it at all.

Sometimes we need to just stop and consider alternatives. Change can be scary, but taken in little bites, and not all at once, sometimes changes can bring about a lot of relief and comfort in exchange for the pain, anxiety and frustration.

What can you do, one step at a time to remove painful experiences from your life and to substitute or build new and pleasant experiences for yourself?

Autism executive function

Getting things done

Disorganized, lazy, procrastinator, negligent, sloppy, messy, always late,
late bills, late for appointments, late for work, cluttered, dirty, overwhelmed!

This is the life of many autistic adults. Although we love details, many of us need help with every day life due to struggles with executive function. Executive function is the part of us which is used to organize, start a project and follow it to completion, to do basic household chores in a regular and frequent manner, to follow up on paperwork , balancing a check book, paying bills, keeping files so that we can find important records when we need them ( or in case we need them). Executive function is getting work done in an orderly way and keeping up with due dates, project deadlines, keeping within guidelines or following directions.

There are many things that can contribute to our struggles with executive function. Like everything in a spectrum, there are some very vague areas of functioning from deep struggles with everything or not needing much help if any. Struggles with executive function are not diagnostic of autism, but many of us (autistic folk) need help sorting it out one one level or another.

Proprioceptive difficulties can add to our burdens… how do we know and recognize when to do any specific job? How far should I go with cleaning? Quick wipe down? Deep clean? How often?

The ability to even begin a project can be held back by several different issues. We could have Demand avoidance, performance anxiety, learned helplessness, troubles with memory either or, or both short or long term. There may be need to see an occupational therapist to help devise strategies that are useful to assist functioning levels. Psychologists or other therapists may be able to help with the anxiety, helplessness, and avoidant behaviors.

Some of us are great at finding details, but not at sorting them or ranking them in a way that can be useful. We might need help deciding which details are important and which are of less importance, and ranking them as priorities.

Struggles vary and each of us will need help with different things.
I might know I should do the dishes and clean the bathroom, vacuum, do laundry, change the sheets, etc. but how do I know when to do these things, and have I learned how? I needed to learn each of these tasks individually and was fortunate to have been taught much of it as a child. I had to get books on household administration and read them, advice on auto care, information on lawn care, household maintainence and how frequently to have things like the furnace serviced, etc. There are lots of informational resources on line! We can ask others to teach us or help us sort out the details of almost anything. We do not have to struggle along and make do, there are usually resources available.

With autism, we can break each individual job down to its smallest components.
Naming Tools needed for each job, and supplies needed. ( how do we choose them?) Then we learn how to go about doing each task. How to use the washing machine( what kinds of things go in the wash water, cleaners, brighteners, scent, softeners?) and hang clothing to dry, our use the dryer ( do I use dryer sheets?) How do we treat stubborn stains and spots? How do we fold the clothing and do we have a single certain place to put it every time ? It is more complicated than it may seem. If we missed those lessons as children, we need to find a way to learn them today. The same for every single thing we do to take care of ourselves and our possessions, and our households.

A project such as “housecleaning” can overwhelm us until we learn to break it down into small steps.. instead of “cleaning the kitchen” as a job, we can break it down to small tasks. Collect all the trash and take the garbage out. Wash the dishes. Put away food/spices and utensils. Do we have one specific place where each item belongs? clean the counters and cabinets, wash the floor. We learn individual things like cleaning the oven and cleaning the fridge as separate tasks and make sure they go on our list of things we don’t need to do daily, but less frequently. we can use lists, schedules, electronic devices, calendars, reminders in the form of post it notes or a cell phone that might call you back and remind you.

The same goes for individual paperwork tasks… do we know where we keep supplies, what supplies do we need? Where will we work (desk, kitchen table, ???) Do we have adequate light? What dates do we need to be aware of? Bills and other deadlines can not be ignored, but must be planned for and this is something that we can learn. Many management techniques are available, from credit, debit, electronic banking, using an accountant, etc. If you don’t feel you can do it yourself, please ask for help. We can get easily overwhelmed or frustrated, and letting these things go can cause such major problems.

If you are not able to sort executive function issues on your own, there is no shame in reaching out to get help from others or to rely on paying others to make sure some of this stuff gets done. I must point out that I do not know what resources are available in other countries, I am speaking from the perspcective of a person living in the USA in a small and relatively poor and rural community.

I suspect some places have nothing at all to help. In this case, talking to others and asking how they handle specific issues may get some guidance or insight.

Who do we go to for help? Talking to a friend, family member, therapist, social service agency, your doctor or minister, and explaining your struggles can get suggestions, help you find ideas the might work for you, and get referral to others who can help if they can not. Many areas have senior citizens agencies set up to help seniors with daily living struggles, senior centers usually have information services. government agencies, on city, county, state levels may have programs to help seniors with issues of daily living, including cleaning, keeping appointments, food plans/ meals or food programs, etc. If you need help, there is no shame in asking for it.

Millions of autistic adults

undiagnosed in the USA today.

Per the USA’s Center For Disease Control (CDC) there are 5,437,988 autistic adults as described by those being over age 18 upward in the USA today. CDC claims this statistic as 2 percent of today’s population in the USA. Census numbers after 2020 may drive that number still higher.

A notice posted April 27, 2020 claims the CDC has determined these numbers so that states can be aided in budgeting and planning funds, etc. regarding diagnosis and support (“treatment”) for autistic adults. All states now require insurance plans to cover diagnosis and supportive therapies for autistic adults. Children ageing out of the system, which used to close at the age limit of 18, are now going to be supported as adults as well.

The happy side effect of parents of today’s early diagnosed children’s and young adults’ activism ( this was entirely unintentional, I am sure within myself) is the new availability this could give older autistic adults in this country for access to diagnosis and support.
Support plans will soon be in place for adult autistic folks. Will elders once more be overlooked as focus is on the younger generations, with most Americans never suspecting the hidden millions of autistic adults struggling without diagnosis and support that many so desperately need?

Educators of those already practicing diagnosis and those now just learning how to diagnose and recognize autism must learn how autism displays differently in all adults and how diagnosis of adult females may be more complicated than today’s standard diagnostic criteria.

Statistics posted by the CDC show that males ( children) are still diagnosed at much higher rates than females.

There are no known statistics on how many adults have been diagnosed, or the proportion of males to females who have received late diagnosis.

I see the CDC’s post as a ” first light ” showing in the attempts to find diagnosis for all age and gender groups who have struggled lifetimes with autism and never knew, never had help, never suspected.

I have been feeling frustrated and discouraged lately. My personal plans to offer local talks and information to local groups likely to encounter un-diagnosed autistic elders has been completely shut down by Covid restrictions.
Now I am considering a different, possibly more effective approach to gaining more diagnostic and support structure for older adults with autism.
College classrooms are the places that need to offer more information about autism and how it presents in adults and the elderly. Professional groups for individual practices need to be alerted to the presence of adult autistic people. Political entities who plan and portion out those huge budgets need to know about adult autism. The list of places to raise awareness is practically limitless!

As a group, older autistic adults need to speak out about finding diagnosis, and need to bring attention to the need for support, to organize much as the parents of autistic children have.

If population statistics are correct, the adults in the USA who are autistic out number the children who have been diagnosed up to age 18 .

Time to speak up and ask for educated diagnostic and support systems.. Laws for insurance coverage have changed. Colleges and other schools need to be aware and make changes to provide for the future.

Baby boomers will all be over the age of 65 by the year 2030, just 10 short years from now. Will elderly autistic populations get the support they/we will need as they/we age and rely on others for our medical and physical decline as we grow older?

Will young adults “ageing” into the system get the support they need? CDC has taken the first step by providing numbers and an “authoritative” source of information on which individual states will be basing plans now required by law.

Many of us will be watching with interest.
If we are able, most of us ( ageing adults who are autistic, whether formally diagnosed or not) can help raise awareness and place social pressure by making lots of noise to legislators, planners, providers. Call, text, write letters, email, write letters to the editor of your local newspaper, contact local TV or radio outlets…. whatever you can do, we need each other right now.
The demand is there, we know it, but I am not sure that those in the places we need to reach are hearing us. Please do what you can!

Autism Self Love

Autistic negative feedback” baggage” and learning to love ourselves.

Self love is a very difficult concept for me.

I think it is difficult for many other elder autistic people too. The very idea that we deserve anything as an individual has been driven out of our thoughts by negative feedback for too long.

From my earliest memories I recall feedback from others about my selfishness, laziness, thoughtlessness, worthlessness, my failures and my seemingly deliberate wickedness.

Those negative statements about me and my behavior, plus early and continual childhood training as a Christian (where everything is about taking care of others, service to others, selflessness, giving and humbleness) were absorbed early and taken to heart. Having no other guidance and trying to understand the rules for living life, it is no wonder I got so much of it wrong.

In a recent online discussion and subsequent blog ( Was there Love?) wrote thoughts about how most of us in my autistic forums on line felt unloved and unlovable. This is sort of continuing the theme and enlarging on it. What do we do with all of those negative feelings about ourselves and our lack of worthiness?

I got therapy at age 30 due to suicide attempts and depression/anxiety I could no longer control by my willpower alone. The therapist probably had his worst problems in me with my self worth and my inability to stand up for myself.
I did not understand that my thoughts and opinions or preferences had any value. I had to learn that I had worth as an individual, and then I had to learn how to express my thoughts and preferences, set healthy boundaries and above all, learn to take positive actions to keep the boundaries and to take care of myself instead of sacrificing my self in response to other’s demands and desires. I had learned to appease others when I was very small, to avoid punishment and anger. I had to be taught that I was a person in my own right and that it was OK to want things, to ask for things, to have my own beliefs and ideas. Autistic rigid thinking was at work, and I had no idea that I had alternatives. It was terrifying to suddenly be responsible for my self.. I had to take responsibility for my thoughts, my behavior, my ideas, and above all to take action to enforce boundaries to declare myself a person and not a servant, slave, or accessory. ( among other roles I was expected to play )

I was not able to get past the idea that I was at all worthy of being more than a puppet for others to use as they chose.
I ended up having to look hard to find the time in my childhood when I began to learn the negative things and believe them.

I ended up seeing myself between ages of 5 and 8, and being able to find the little girl who was so afraid and who felt so unloved and unwanted. When I was able to do this, ( and remember I can not picture a thing in my mind, so I need visual aids such as photos, models, maps, or drawings to “see” things), I purchased a sad looking child-doll (not a baby!) and put her near my bed so I could see her and think about that child and how I was now able to give her what she had need and not got. I took care of her in my mind and heart. I took pleasure in giving her new clothing, imagining her being cherished, supported, fed and cared for, helped with struggles and given love. I was able to transfer those feelings first to my childhood self, who had missed it all, then to my middle school and teen years and the years of my early 20s.

Breaking though that initial barrier of feeling unworthy took a lot of time, though, and emotional homework. I cried for that little girls a couple of times, but not for long. I had been trained to believe my feelings were not worthy of being recognized and taught to hide them deep within myself. That was yet another skill to learn, to identify my own emotions and to recognize them properly, and to learn to respond to them properly.

Autistic people have many struggles identifying emotions and sorting them out as it is,
our proprioception/ interoception neurological issues being common to most of us.

I was taught to deny my emotions or to redirect them until my whole idea of self was buried deep in what I hid, and never thought or understood that there were other ways and that other people handled these things differently.

It has taken a very long time and lots of hard work to develop new behaviors and to find new ways of thinking. I am certain that many of us, especially older people who have never considered they might be autistic, grew up with similar training… and with similar results.

Years and years of negative feedback from family, neighbors, schoolmates, co workers, spouse and other contacts in our experience have led to our deep self hatred. How could we get things so wrong? How could we fail over and over to perform as expected? How could we mess things up so badly. It was our fault! We were useless, stupid, worthless. Years of negative feedback is a lot to overcome.

When I learned about my autism, suddenly things began to make sense. No wonder I could not do what they wanted me to! I have neurological struggles which they do not have! They expected me to behave as they do never knowing, any more than I did, that I simply was give a different “tool box” from which to do what they expected of me. So amazing!
No wonder I failed! No wonder I could not work to expectations ! No wonder everything was so hard!

Diagnosis changed everything for me, even though the therapy 38 years ago helped me survive and do better in the world, it was not then that I discovered how much my autistic struggles contributed to the difficulty and distress in so many parts of my life.

Here is my message.

You are worthy of respect. You are worthy of caring, you are worthy of love and friendship.

You are an amazing survivor of so many things that were so hard to understand and so difficult to live through, never knowing about autism and about how it has worked in your life to cause so many struggles that others simply do not have.

There are so many new ways to live and to care for yourself, to assure your needs are met and to give your life a richness and fullness you might never have thought you could have.
Please take the time to explore the options, to feed the needs inside of you for so many things you have been missing all these years. Take time to find self care, self comfort, self accommodation, self interest!

If you struggle with self care, I suggest that you think about a stranger you might come across, who has had a very hard life and is full of hurt and feeling un-cared for and misunderstood.
How would you help that person?
Would you punish, shame and chastise them?
Would you be constantly angry at them when they struggled to do things that were difficult for them?
No, I doubt you would.
Instead you might try to help and encourage them, wouldn’t you?

I hope you can look at the lost stranger inside yourself and be at least as good to them as you would be to any other person .

Autism Awareness April

April has been designated Autism awareness month once again.

The word is getting out. Autism awareness and acceptance news is spreading.
This is a challenge to all of us to go one step more, some of us will make posts, give talks, write our blogs, participate in other awareness and acceptance activities.
I hope we can add awareness of autism in adults to the things we discuss this year. (2020)

Extrapolated from the most recently completed USA Census, There are 1.6 million children in the USA (2 percent of the total population of those under age 18) who likely are autistic.
Awareness is rising and help is becoming available for children. Never quickly enough but we are definitely making progress.

Children do grow up. Here is a statistic that might surprise you.
Did you know there are likely 4.2 million autistic adults over age 18???
(2 percent of the adult USA population age 18 and older). Did you know the majority of them will be completely unaware of their own autism?
Please share these statistics. Those of us who are affected by autism know the difference a diagnosis makes in our lives.
Thanks for sharing, and for promoting understanding of autism in all ages.
Learn more here:

https:// oldladywithautism.blog/author/debrabrisch3436/

feel free to copy and paste! Share Share Share thank you.

Autism enrichment

learning enhancement

stimulation for growth or comfort, adding wealth of experience

creating new opportunities for self expression, growing skills,

finding new ways to connect with our world.

When I was a very young child I spent my time in a ‘chair table’ seat which

kept me confined for much of the day. From the time I could sit up until I could walk with the aid of my parents holding my hands, I rarely left that table. My mother was autistic and I was her first child. She was terrified of germs since they brought me home as a preemie of 4 lbs with strict instructions to wear masks and sterilize everything!!!! I can remember spending time in that chair clearly. She would give me things such as measuring cups, spoons, some plastic toy or bits of food whenever I would get restive or call to her. She spent a good bit of time out of sight in another room but I could hear her, and often she had the radio on. The sounds fascinated me.
It got to the point that I was bored and restricted in that chair and began to fight being put into it.
A few whacks on my bottom got compliance at first, but soon after I began to fight in earnest. She finally understood that she needed to do something else with me. I was allowed to roam on the carpet or spent time in my crib with playthings.. when I was ‘free’ I was hit on the hands or the backside if I touched something I was not supposed to. I never understood why I was getting hit, It would come out of the blue and I never associated the punishment with the transgression. (that is another story).
A few times when at the grocery store my mother selected little “wonder books” from a rack and brought them home. She was a very poor reader, but I do remember her reading those books to me and my sister … the presence of my sister means I must have been at least 2 years old. How I loved the books! I was hungry for more books and as soon as I could talk I asked to be read to and asked for books when I spotted them in the stores. By 4 I was reading way above my age level, my first adult book was “Robinson Crusoe” which I found at the back of my grandmother’s closet on a visit to her along with a treasure trove of Will James, Sanford Tousey, and other books for older kids and adults. It is hard to describe the joy that brought! I started kindergarten as a reader but although we were taught words to read on the blackboard (boring, I already knew them) I was not allowed access to library books of the classroom in first and second grade. Instead while all of the other kids were reading, I was expected to work on my very poor penmanship and learning to print in first grade, then to write cursive in 3rd grade.
It caused me such pain to be punished like that. I felt only discouragement, the idea that I could write well enough to be allowed to read was never grasped. It caused me such despair that I struggled so with writing. I would never get to that bookshelf. ( I never did, in those classes) I was burning to get at the books!

About that time ( summer between first and second grade) my mother learned to drive and took us to the library a few times. I was so disappointed that I was only allowed to take out 2 books at a time. Sister could take out 2 books too, so that gave me 4 new books to look at. Soon I was pestering my mother for more trips to the library. I think she dreaded it and had very little interest in it.. it meant she had to read new and more difficult books to us (she was so dyslexic her reading was probably 2nd grade level).
Mother hated books around the house, ( somebody might ask her if she had read them, or ask her questions about them) although she usually had a woman’s magazine for the new recipe and craft ideas/ decorating ideas they contained. She hid my father’s favorite books in the back of the closet and refused to let him leave them around the house.
I read those magazines, and when I discovered my father’s books in the closet around age 10 I devoured every one of them. “How to make friends and influence people”, “Shepherd of the hills”, “Sgt York and his people”, ” How to build your dream home for under $5000.”… What if I had volumes of appropriate reading material instead?

I often wonder what might have happened if I had free choice and help in choosing special interest books and free- will selection of books at that age? I did not get that until I was allowed to walk to the library by myself at around age 12. I had to walk to school and the library was on the route. I came home with armloads of books several times a week.

What if I had been given more input and stimulation during the early years in that chair and in my first explorations as a barely-toddler. What if? ????

Fast forward to today’s children, especially those confined in any of many ways and in care (as are all infants and small children). Are children getting enough input from other sources besides tv and videos and continual exposure to electronic games ?
Are they having adventures in new places, seeing ,touching, feeling, observing, hearing,tasting new things every day?
At that very young age I was a sponge for knowledge, absorbing everything I could. Instead of being exposed to every possible stimulus and source of input, I was confined for the convenience of the adults in the house, shut away for the comfort of the adults, restrained and made to refrain from learning new things by the adults in control at home and at school.
Parents and caretakers may not be aware of the huge thirst for information and the inextinguishable curiosity that goes with many autistic children (and NT children too!)
Imagine nurseries, daycare, schools, institutions for care taking for both young and old people.

I worked in a child care institution before I retired ( most of the kids were autistic) and my mother was confined to a nursing home for the last 6 years of her life. I saw for myself the poverty of input on those “care” levels. Except for one ‘planned craft’ a day, it was videos, tv, music… and not much else, all day every day, even those in very limited amounts. (the kids had school and counselors daily as well).
I have seen the minimal interest in giving input and creative/ self expressive outlets to the residents there. “it just makes a mess” “what is the point?, it is a pain”.
What a desolate and vacant environment! Overworked, underpaid for the most part, struggling with their own lives, caretakers, parents, daycare workers and some teachers may be far less enthusiastic than the would-be participants.
I urge those who might have autistic persons in your charge to consider how lives could be enriched at every stage of living.

The best way to work

Autistic strengths and weaknesses of function
Find the best way to understand everything!

I have been spending time examining the ways I learn. I am beginning to understand all the best and worst ways I deal with the world.
I spent more than 65 years not knowing that it was near to useless to attend a lecture or live demonstration of any technique or process. I simply can not absorb the information presented.

I spent more than 65 years never understanding that what I heard and saw in lectures, live demos, and other audio or visual presentations such as television, video, or podcast would be wasted time for me.

I spent 65 years wondering how I could be so stupid, and how come I didn’t
seem to “get it” or understand what was evidently plain to others. Any social interaction or gathering was nothing but confusion, chaos, misunderstandings, frustration, and disappointment or humiliation or both to me.

I finally found out , through neurological testing once I knew of my autism diagnosis, that my sensory processing in all things audio and video, and especially in a combined format was only 30 percent or less functional. That is very very low! Finally I understood.
Try this. put on a pair of sunglasses, tear a tiny hole in a paper napkin and cover the lenses of the glasses so that you can only see the bit of light and image through the hole. Then put on earplugs, the kind that muffle all sound. Now go watch a movie or a video you have never seen or turn the radio on and listen to it without raising the volume . How much did you understand?
That is what most of my life experience has been like! No wonder I ‘didn’t get it’!

In order for me to learn, and to understand, I must read the information and look at diagrams, line drawings or simple photos in order for me to truly absorb and process information.
I will always struggle to understand real life interactions with others, or anything I observe (think of baseball games at the stadium, a concert or an opera, a lecture or appearance by somebody you admire) Real time is always too fast for my processing. It is how my neurology works.

Do you know how the neurology of your autistic children , autistic parents, spouse or friends works best?
Like my parents, peers, siblings, bosses, co workers, and teachers all those years ago, are you thinking I am being stupid, obstinate, willful or deliberately mean when in truth I do not understand what is expected of me, why, nor understand what might have just happened to create the upset situation I have somehow caused?

Neurological tests show I have high average intelligence… it proves I can learn.

But I also have real definable handicaps to understanding most things around me that happen “in real life” or “in real time” around me. Think of how this affects me every day. Interactions at the grocery, post office, doctors office, with neighbors, spouse and family, any ordinary interaction for you is filled with social hazards for me!

Sensory processing is how we receive any information, make contact with our world, or understand
what is happening around us. Sensory input is how we interact with others, with how we learn.

I have become convinced that knowing my strengths is the best way for me to proceed from here forward in light of my autism diagnosis.

Now I wonder about all the ways other autistic people process information. It seems that most autistic persons are highly visual. Movies, live demonstrations, videos can all be helpful. If the person has audio processing struggles, or is not visual, but is able to process audio spoken or sung words, etc best, learning techniques can be adapted. Not only learning, but what of every day life? What if the person whose best strengths are visual could use visual reminders of things needing to be done, of schedules or lists or to learn new ways to do things? How can this strength be put to work for better successes in every day living?

What if the person whose strengths lie in hearing and audio input could use those to learn, to deal with lists and reminders, to find new ways to do things? Recorded information, books on tape, audio reminders on phone or hearing/listening devices would boost learning and performance. How else could tools that aid audio processing help every day?

People whose strengths are in physical performance, or related to scent, tactile information, or other ways of processing the information accessible around them could all be aided and supported better by finding ways that utilize their strengths.

I am especially concerned with children being forced to participate in meaningless rituals of social and traditional ways of ‘teaching” and other interactions, when in many cases very little benefit is to be gained. I struggled through out grade school. I was constantly scolded, punished, chastised for not paying attention when indeed I was trying very hard to understand what was being presented. It was demeaning and frustrating and I simply did not understand why I could not listen and learn. I was a very unsatisfactory pupil, and very unhappy almost always. I was completely lost! And I was trying so very hard to be good, yet getting scolded and demeaned almost continually. Nobody knew!

I got very little out of school until I was in 6th grade and the lecture method of teaching was augmented by assigned reading. I finally was able to read the assigned chapters and understand what all of the spoken lectures and demonstrations were about. I finally began to do well in school classes. Because my visual and audio processing lags so, I was never good at and never will be good at social interaction on a face to face, ‘real time’ basis, nor on the phone…… but because I get most out of reading and writing, I can still have a decent social interaction with people on the internet or by email. We can exchange ideas and information because I can process what I read at my own speed and do not make others or myself uncomfortable with my odd reactions, expressions, appearance, or easily misunderstood demeanor or emotional or flat expression in my spoken words. I do not get anxious to respond within moments to spoken requests, questions, statements, etc. I can take my time to understand the words in print, and to formulate my responses in print as well. Perfect media for my situation and particular strengths and weaknesses.

I urge parents to look deeply into learning the best ways to reach your child. The same for spouses, caretakers, teachers, and others interacting with autistic folk. By changing the methods you use to communicate, teach, interact, express yourself, you may find you change the attitude and outlook of the autistic person/s in your life. Find new ways to do everything , keep trying until you get positive responses.
It will mean all the difference in both your lives to find the best ways to make the “real” world’s input make sense and to share information.