Ageing and Autism

Number of studies growing

Well, sort of……….

https://www.liebertpub.com/doi/10.1089/aut.2021.0041

Start by reading the article here. Since 2012 the number of studies about autism has grown. We are being studied and understood, but pay close attention to what is said here and look at the numbers !!!

Although extrapolation of USA Census and CDC information says there are over 5,500,000

adults in the USA with autism today, only a very small percentage of us have found professional diagnosis.

There is no idea or way to know about numbers of those of us who have found our own diagnosis and know of our autism without professional guidance. This number is growing as adult autistc individuals share information, post blogs, begin support groups and forums or internet pages with information.

The growth of information about adult autism seems to be in our hands because nobody else ( medical and support community, including researchers) is paying attention to this issue. If I was an autism professional I would think the sheer numbers of older autistic adults would be enough to persuade me to open investigations.

If there are needs being met and mined for profit in the younger generations, there are definitely financial prospects in finding ways to best serve adult autistic individuals as we age into the times when we need more specialized care that almost 75 percent of senior adults need.
The very few studies done to date show us that autistic individuals have more health care and housing and support needs than the average individual as we age.

There is very little interest in helping older adults gain diagnosis and support into older adulthood ( I use 50 and over as a “cutoff” age for referring to adults as “elders”).

The idea of using a new name to gain attention as a “tag” for this group of autistic adults is convincing and important.
A key word or words might help us find more information when we are mentioned in studies and articles.
Here is the catch. There is not more information to be had. Studies and articles must be produced and they simply do not exist in any number.

Very few significant studies have been done regarding autism and the elderly.

Very few are being produced today. It is mostly blogs like this, and online groups which are growing.

Information is being shared by autistic individuals for the benefit of other autistic individuals because it is not readily available in any other way.

Note the authors of this article proposed the word “gerontautism”.
Feedback from the community must not have been great because the proposed key word has been eliminated from the article.
This is going to be debated in the community as the idea is spread, and there will be many proposed key names or tags.

Many already use the phrase “autistic elders”. or “older autistics”.

The name for us as a group is less important than the discovery in this study that only .4% of today’s studies about autism have anything to do at all with ageing autistic adults.

Its not just the way we self describe, but more importantly that there seems to be such little interest in how this huge population of older adults is faring, will do in the immediate future and learning how society must change or grow in services and skills to support this population.

How will we prepare for our most difficult years and how will we accommodate and help our autism as we experience not only old age and all its disabilities and physical failings, but also our autism and the special and individual sensory struggles we must confront daily. ???

How will society train caretakers, provide housing and other care when we are no longer able to care for ourselves?

How will we train medical and support teams, how will we know what the needs of the autistic and ageing population are?

This is a plea to researchers to begin to ask tough questions about what happens when those with autism grow up? There are millions of autistic adults who are hitting the “elderly” mark of age 65 within the next few years. All of the baby boom generation will be over 65 by the year 2030.

More studies are being done now on young adults, but there is very little recognition that autism existed long before 1980 when the very first autism diagnoses were being done.

This is yet another call for professionals to become involved in research.

Time is getting short, there is much need.

Autism Warriors

The choice to make it all a fight

Something is happening that is becoming harder to ignore. I have always been a peaceful person, live and let live, agree to disagree if necessary, you go your way I go mine. I tell people I am a lover, not a fighter. The fight is being brought to my door more frequently lately, or it is being pushed on others. I see more hype and more anger and more frustration, more people being targeted for angry attacks. Maybe I am just getting old, but it all seems so destructive and not helpful.

Kind of vague and non-specific rambling so far, right? Let me try to explain. Instead of conversation about any topic, I am meeting more people in groups I participate in and host who are intent on destroying and shutting down anybody who says something they disagree with.

I am experiencing and hearing more from others who have encountered individuals who specifically go to pages and sites to post angry diatribes about how bad certain expressed ideas are, and “why don’t you do “this and this and this” instead of saying “this” .
You are harming autistics, you are damaging and hurting us, you are not supporting us if you don’t “this and this and this” (naming specific ways the host, the speaker, the selected ‘target’ of the attack is supposed to think, act, believe and to do .
I have left several groups because of this rage and focused furious attacks on members who should be allies. If one does not think exactly as the attacker, one is a pure enemy and must be destroyed. I think this is a great illustration of classic autistic “black and white thinking”
This seems to happen on all ends of the spectrum, from parents of autistic children to old people like me, to young and barely communicating individuals using forums for social purposes.

I know about trolls, those who roam the internet deliberately stirring things up and provoking confrontations for the sake of their own amusement, and sometimes in gangs, joining together and taking turns attacking or observing others do the attacks.

What is different here is that these same attacking individuals are posting about how they go about their ways, and report triumphantly that they had these confrontations with the evil parents of struggling children, the evil old person who uses the wrong words, the evil person who dares express an opinion or suggests the wrong idea or thinks differently than what they “should”. They seem to see themselves as heroes setting the world right and destroying the monsters. Too many role playing video games in their past? Who knows?

In my own mind, I have an idea how the world “should” be too. It does not include attacking or shutting people down, shouting them down, harassing or distressing them or deliberately provoking defensive arguments. Autistic people have been bullied enough in “real life”. Forums and groups need ( for some of us) safe places where we can discuss ideas and support each other in our daily struggles. Life is hard enough without finding ourselves in the midst of angry diatribes and being the focus of hatred because our thoughts are different. We already know we are different every day. We don’t need attackers within our forums as well. I wonder what places on the internet spawn such angry and self justified individuals. I wonder how so many are seemingly cheering each other on as if they were accomplishing a victory or banishing an enemy.

I believe all sides need to be presented so that others can understand what the arguments are about, can see what issues are at stake, and can learn for themselves so that decisions are not made on quick gut emotions but are also clearly thought out and decided on from actual information.
I guess it is just another facet of autistic communication struggles, this direct attack behavior thinking of oneself as a hero, but it is one that I have difficulty finding peace with.
I would rather educate and elucidate, validate and inform than spend time fighting and fleeing while trying to defend ideas and thoughts.

I am learning how to use the “block” or “ignore” button.

I wish I had the inner strength, the ability to think quickly, the emotional resources to try to help these individuals, but I begin to think it is not passionate beliefs or intense devotion to a cause that they are espousing as much as it is some sort of sport, much as when the dog discovers its first henhouse. How exciting!!!
There, I am showing my old age, but I never did pretend to be anything but an old lady with autism… or maybe you prefer I say “autistic old lady”.
I actually use either description of myself and I don’t have to pretend that part.
No answers, life keeps rolling on. Watching with interest.

ageing with autism

the getting older side of being autistic

My father used to quip about getting older “it beats the alternative”. Yes indeed, that is true.
Day to day struggles as we age make life harder for all of us.

Autistic people who are already struggling with life and how to get through it successfully may have more difficulty than whatever is “typical”. Nobody escapes it, everybody gets older unless they have achieved the alternative (death).

Health issues and simply living longer are extra difficult when autism is in the mix.
We are often less aware we are having physical problems due to autistic proprioception/ interoception difficulties.
Some of us simply don’t notice that “something is wrong” until it is discovered by somebody else and pointed out.
Some of us are afraid of going to the doctor, the clinic, the emergency room, some of us need a lot of support to do self care such as taking regular meds, getting regular checkups, “tune ups” and follow ups .
Many autistic people have hard times sticking to special diets, shopping for special foods or aids to help us be safer, being aware of safety, keeping ourselves and our surroundings clean and healthy, etc etc etc.

I am aware that those who have “normal” neurology may struggle with these things too, but I also wonder how many elderly with those listed problems might also be undiagnosed autistic?

We may be more prone to falls, to have more health issues, to get less care if studies of the past are correct. Overall, many autistic adults do not live to become old. Average age at death for “normal” adults is 70, average age at death for autistic individuals is 54 .

I guess I don’t have to emphasize self care and attention to safety as we age. We know we will all have more struggles as we get older.
Why not consider what things we can do at present to prepare for better self care as life gets harder.

Put safety precautions and self care at the top of the “TO DO” list today.

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 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 Emergencies

The importance of being prepared.

I can’t say this is about autism specifically, but being autistic and elderly has made interactions with others harder for me than it might be for some people.

In mid March 2020 my husband had a health emergency which took us to the hospital Emergency Room.

In our state of the USA, Covid 19 precautions had just been enacted.

We were screened for that from an isolated hallway, as well as having to give a summary of what my husband’s problems were. We provided proof of insurance and established that I was his spouse, his representative, and his power of attorney for health and everything else.

I was allowed to wait with my husband while he was seen and tested by many different medical people, until he was finally admitted for emergency life saving surgery.
I was allowed to stay while the operation took place and after, I saw him in recovery, and followed him to his room and saw him comfortable. I saw him again early the following morning. At that point rules had changed for Covid Isolation in Hospitals. I got a call saying I could not return to the hospital to be with him.
I was not allowed to see my husband again until he recovered enough for me to pick him up and bring him home. ( I stayed outside of the hospital, in my vehicle, he was brought to my car in a wheelchair).
We were lucky because he came home alive and continues to be well.

Things like this can happen to anybody and at any time!
Some time ago, we had made each other Power of Attorney and Health Care Power of attorney, filled out a living will making each other designated decision maker/ representative if health care decisions were needed and the individual as a patient could not respond for any reason.
We made our wills at the same time.

Today I see we made good decisions to have these issues settled while we were in decent health, decent mental condition, and not in crisis.
We could discuss everything regarding our health issues, willingness to accept life support, choices surrounding “do not resuscitate” orders, etc. We could decide who we wanted to include in our will, how we wanted our “worldly goods” distributed, make special mention of the family special items and who they should go to, etc.

If you are alone and do not have family or spouse or others to speak for you, it is most important that you have these papers showing intent and giving the persons you trust the power to help you through health struggles if you ever need it. Alternatives would be next of kin, no matter how far removed, or to have court appointed guardians or your individual health care providers making decisions regarding your situation on their own. Didn’t want to spend the next 10 years on life support in a coma? Without directives and representatives, you might not get your way.

If you want to assure your best interests, it is important for you to make those choices and decisions for yourself or have available somebody who you trust , and who knows what you want, to help you.

When I was my mother’s caretaker/ representative and we had to travel, I carried copies of all the papers we needed, as listed above, plus her medicare/medicaid/insurance papers and copies of her social security card, a list of her medicines, her meds for the day, a change of clean clothing and other needs all in a backpack that I could put over her wheelchair handles.
When I had to meet the ambulance at the hospital to have her admitted for frequent health crises, I had everything I needed to assure she got the help she needed and was her spokesperson and caretaker while she was in hospital ( Parkinsons’ dementia, autism, etc made it necessary for somebody to be attendant with her at all times.

The point of these illustrations is that we don’t know what the future might bring, but we can make any crisis we experience easier to deal with by preparing ahead. Please consider how you want to be helped, who you want to help you, and what you will and will not want “done to you” in any health crisis. You will have peace of mind and you and your Representative/Power of Attorney will not have to wonder if they did the right thing. You are more likely to get the care you need if you speak up about things that are important to you while you are not in the middle of a crisis.

Just another set of tools you can use.

History of Autism

This is a condensed history of Autism. In keeping with the practice of citing references, please note I used a Parents.com article titled ” The History of Autism” as a base of information, ( see original online). They provided the “bones” for this blog. ( Thank you) Here I have used my own wording, but full credit for the majority of dates listed and the homework involved in creating the list must go to them. I have added comments and changed wording, details, and added dates that I was able to find while searching for documentation and more information. I have been able to fully confirm the statements here using online research outside the quoted reference above. You can check for more info online as always.

Autism Timeline

1908 Eugene Bleuler , a Swiss psychiatrist, uses the word “autism” to describe traits of a certain group of schizophrenic patients. The word is based on Latin root words which mean “keeping to oneself”

1925 Grunya Sukhareva, a Russian child psychiatrist , described symptoms of recognizable behavior patterns in a group of children she described as autistic.

1943 Leo Kanner MD, publishes a paper describing “early infantile autism” describing traits of children who isolated themselves from others.

1944 Hans Asperger , Viennese pediatrician, describes “a milder form of autism” in a group of boys he was studying, saying they had trouble with social interactions and obsessive selected interests.

1950’s ( and well into the 1960’s ) Through the work of Leo Kanner, autism and many psychological disorders were blamed on cold and uncaring mothers. In 1967 Bruno Bettelheim even coined a term “refrigerator mothers”, and Kanner’s original theory was popularized on news media and talk shows. The idea of “poor parenting” being to blame for so many disorders was touted- although the same ” poor parents ” might also have had several children who were thriving. This theory has been disproved and for the most part discarded, and not a moment too soon. ( my opinion)

1977 Studies of twins shows autism is genetic and due to biological conditions in brain and neurological development. ( continuing scientific studies have even located specific genes which seem to be connected to autism)

1980 “infantile autism” is listed in USA’s DSM( diagnostic criteria) for the first time as a condition separate from schizophrenia.

1981 Lorna Wing, psychiatrist in London England, originates the term Asperger’s syndrome in describing higher functioning autism in a group of individuals. Lorna Wing is also credited for recognizing and describing the “triad of impairments” that is used as part of the diagnostic descriptions of autism today.

1988 Rainman movie is released, and public awareness of autism is raised to a higher level. Today autism is a feature in many characters of fiction, movies, television, even cartoons. Media has raised awareness, but frequently also has caused many misconceptions about autism.

1991 USA adds Autism to be included in education system under Special Education category.

1994 Aspergers’s Syndrome added to the DSM in USA as a separate category of high functioning autism.

1998 Lancet publishes a study looking at the possibility that MMR or other childhood vaccines may cause autism. This theory has been debunked by many published scientific studies after, but it still has a following despite proof to the contrary.

2000 Thimerosal is removed from all childhood vaccines due to public pressure, there has been no link found in studies; once again, the theory of vaccines or any of their components as a cause of autism has been scientifically proven incorrect.

2009 USCDC estimates autism is likely present in 1 of 110 children.

2013 DSM 5 in USA removes Asperger’s syndrome as a separate diagnosis, replacing it with new diagnostic criteria as autism.

2015 USCDC statistics now show autism may occur in 1 of 58 individuals. Males are still diagnosed more frequently than females, and the change in numbers is most likely due to better recognition and diagnostic criteria. There is discussion today (2019) that diagnostic criteria need to be developed further and there is a growing perception that females may show different signs of autism than males.