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.

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.

Autism Diagnosed late in life

When I first started writing here, I could only find a small handful of elderly

autistic adults who were writing… elderly being subjective… there were several authors

in their mid 40’s, one or two in their early 50’s, and none over 60.

I have been giving consideration to whether having self diagnosed (still chasing ‘official’ diagnosis, one of the subjects of this blog) my learning of my autism has changed anything? Has knowing about my autism changed a thing?

Many people have asked, what good does it do, to have a diagnosis at this age?

I have to admit that it doesn’t change my disabilities or handicaps, not one bit.

I still struggle with all the sensory processing issues in the same old way.

I still suffer emotional distress, still struggle to understand context, intent, and other issues involved in any social interaction.

What has it changed, this knowing after all these years that i am autistic?

It has changed my outlook and my attitude. I no longer see myself as hopelessly inept.
It has allowed me to forgive myself for all of my weaknesses.

I now know my failures are a side effect of my sensory struggles, and not a moral weakness or a lack of inner strength, a weakness of character.

I am beginning to understand my strengths and the way my own mind works.

I am beginning to understand so many things that I misunderstood because of my not knowing about my autism and my lack of insights in so many parts of my early life due to a complex mix of family and social issues during the time I grew up.

I have been reading and learning for almost 2 years now, intently and for hours almost every day.

I finally am beginning to understand how difficult my life is and would have been under any circumstances due to the autism. I knew it was difficult, but now I know why, and I can congratulate myself on coming so far with handicaps nobody understood, rather than punishing myself for not measuring up in so many ways. That alone has been worth more than anything else! My self image is more in perspective with reality.

My self worth is now visible. I had never valued my existence or seen myself as other than undesirable, unworthy, a failure, a burden, an affliction to others. Autism with its rigid perceptions and inflexible rules had me caught in believing things I had been taught about myself from an early age without being able to see beyond those early ideas.

Knowing about my autism, that I am not to blame for all of the things that troubled me and troubled my family and associates, and knowing that others did not know either, answers almost every “why” I suffered with for so many years.

It has allowed me to move on to learn about and understand more about myself than I had ever understood before.

The answer of knowing it is autism is an explanation, not an excuse.

I am responsible for my own behavior, beliefs, morals, values, actions and reactions. I have made some terrible mistakes, terrible choices, in my past. I will continue to have failures in the future.
If I have successes it will be because my knowing I am autistic has not changed my disabilities, it has actually sharpened my understanding of these, but it has also allowed me to understand myself and the reasons for the results of so many issues of the past.

Diagnosis of autism will help me understand better ways to go about dealing with things in the present and in the future. I have new insights from a totally new perspective. I like this side of autism much better than the place I had been for my first 65 years. What a relief to finally know and understand!

I hope more autistic folk of later years ( old people like me!) can find answers to the questions of their pasts and have the relief of knowing that autism explains so much.

In the near future I hope to put together a short description of autism in older adults to be distributed to medical facilities, public agencies of all sorts- nursing homes, senior center,homeless shelters, library, etc. to help people consider autism as a diagnosis in struggling populations. Still working toward an official diagnosis, anxious to get to work.

Research on the internet.

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

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

Finding out

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

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