Making progress?

Autism diagnosis and ageing adults blog

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

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

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

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

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

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

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

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

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

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

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

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

I hope you find what you need!

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

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

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

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.

The Nature of Autism

How Science has given new information to help us

Our understanding of Autism is changing.
At the time of its addition to The DSM, autism was thought to be a behavioral disorder, probably caused by poor parenting and bad things that happened to individuals especially in early infancy around the time autistic behavior or signs began to be observed in a child.

Autism was in the past believed to be something that could be cured by treatments including coercion, which is modified somewhat today but still in use in many places, training children to behave or respond only in certain socially accepted ways to any circumstances or surroundings, stimulus or lack thereof.

Autism conversion treatment was through training using among other things corporal punishment including electric shocks. ( how could this have been worse than the so called poor parenting and trauma thought to have caused autism during this time?) (rhetorical question, think about it, though)

Autism was thought to have been caused by simple willfulness, ( autistic kids being wicked, evil, bad children) wrong thinking,
autistic children having been being “spoiled” by having been raised by inept adults in charge of them, or by having been given no love or caring at all. ( no win for parents who likely in most cases actually cared a great deal more than others about their own children )

Ideas about autism have since undergone beliefs about poor diet, deficiencies, allergies, immunizations, bacteria, lack of bacteria, brain inflammation due to many things including various childhood diseases, vaccination status, food, water or other contamination, pollution, ozone or atmospheric or genetic engineering of food, processed foods with “chemicals” in them and so much more. These ideas are being proved wrong, one by one. Science today has a better than ever understanding of the true nature of autism.

Truly scientific research today has found and confirmed these causes today:

Autism is known to science to be mostly genetic in cause, always present at birth, (not acquired or developed after birth) and autism is defined today as being caused by uneven neurological development.

Let me say that again. Autism is a result of unusual or different neurology that has happened through uneven development of various parts of the nervous system. The “programming” for neurological growth after being born is present before the autistic baby ever leaves the womb.

The nervous system? https://www.news-medical.net/health/What-is-the-Nervous-System.aspx

Yes.

Autism is the sign of uneven development of the nervous system.

What this means: Different parts of the nervous system can be developed or underdeveloped, deformed, missing, non functioning or poorly functioning or extremely highly functioning in different ways in every autistic individual.

Now we can understand how “symptoms” of autism can vary so widely in every autistic individual. Every one of us will have different struggles because every single autistic person will have ” unique to them only ” neurology from birth.

Science has defined markers of normal or typical development of neurology from newborns throughout childhood.
Typically developing infants and children grow in expected and predictable patterns.
A look at any book on child development will describe a newborn’s progress from birth, with a typical average child marking developmental milestones such as sitting up unaided, crawling, walking, talking and so much more at certain ages/stages and in certain expected order. Most “normal” or “typical” children crawl before they walk, for example.

Autistic children may not follow this pattern, in fact, this is one sign that diagnosing professionals use today to diagnose autism.

If a child does not sit up, crawl, walk, talk, or perform other expected developmental milestones “on time” and in the expected neurotypical (NT) order, these are signs of possible autism diagnosis.

Now we know autism is based on irregularly developed neurology with any area of neurological development and function likely to be affected, (most of one’s neurology or only part of one’s being affected) , we can find new ways of making life better for any given individual.

Gradually, autism behaviors are being understood to be due to poor neurological processing of any or all of the sensory systems.
This includes things we see, hear, feel, taste, smell, and our senses of place, time, physical or emotional self, our ability to sense things like light, temperature, taste, our ability to understand our bodily signatures that tell us when we are moving, how hard or how much pressure to use when we touch ourselves or others.
Sensory abilities to understand our emotions, or to do simple things like use eating utensils or open and close a door, climb steps, catch a ball, or use words to speak are directly affected by our neurology.

Things that come naturally to neurotypically developed/developing individuals can be huge sensory struggles in so many ways for those of us with autistic neurology.
When we consider how complex the neurology of any given human is, we can understand how so many varied “symptoms” of autism can be observed.

“Treatment” for autism is gradually changing from “training” the autistic individual how to do things in the way that neurotypical individuals do (this will always fail to a large degree because we are not equipped with typical neurology to begin with) (remember the old saying about fish and bicycles?)

Today focus for helping those with autism to succeed in a neurotypical oriented world is based on understanding of each individuals’ struggle. We seek to understand each autistic individual’s strengths and weaknesses and to help find ways to make performance of every day tasks easier, to make communication better between autistic individuals and the rest of the world, to give autistic individuals better individual tools they may need to succeed and thrive in a world which for the most part is not friendly to performance of daily living functions in other than “normal” or “typical” and socially expected ways.

Communication is emphasized much more today. Finally those offering “treatment” are discovering that if the autistic individual can communicate their needs and their understanding of their lives, the approach we need to help them succeed will become evident sooner and to better effect. It should have seemed obvious so long ago!

“Autisim treatment” simply can not be effective by “one size fits all” rote “training” therapies which attempts to “normalize” our behavior to “make us acceptable” in today’s society.
Such training simply is not helpful because the underlying very different strengths and weaknesses of each individual is so varied and so different from any other autistic person’s. “faking normal” by standardized training methods will never be successful. Ask autistic individuals who have been through these courses of “therapy”.

Behavior is not being “trained out of us” today as frequently. Instead autistic behavior is being examined to understand the neurological processing struggles that drive the behavior.
This is the key to a better life for all autistic individuals. All autistic behavior has some neurological basis driving it. Behavior can be learned as adaptive (and maladaptive) as we experience life, but today we understand Autism is neurological, not psychological in nature.

Today tools are being developed and lifestyles are being changed to make every day problems around certain neurological challenges easier to handle, easier to work around, easier to do in different ways.
Actual communication and understanding is imperative in these therapies/ treatments/ ways we are addressing autism and autistic struggles and strengths.

How long before this understanding is the standard for ongoing diagnosis and therapeutic or supportive aid to be the norm in the medical and social world surrounding autism today?

Autsim Overwhelm

Autistic burnout, shutdown, meltdown, and other distressing things

It can’t be avoided, these are stressful times. Life always throws something extra at you. All times for mankind were stressful times: war, famine, floods, invasions, pestilence, plagues,revolutions, and other traumatic and negative things have always been with us. ( as human kind)

What is new, is that today we are getting information about it all, all over the world, almost as soon as it happens. Until recent generations, news was not spread nearly as quickly, and there were far fewer people in the world. The advent of electricity and the way humans have been able to use it has changed everything. We have changed from a species which mostly worked and lived from sunrise to sunset to a species which works continually, and at the speed of electricity (or light!)

I don’t think our minds and neurology, let alone our bodies are equipped to deal with these changes.

Forward to today, where we are constantly presented with images of horror, terror, distress, anger, fear, and anxiety showing and reporting on things we have absolutely no control over.

Media of all sorts presents these things, sights and sounds, in as upsetting and emotionally provocative a way as possible, since those in charge of making the $$ money $$ have found such distressing things sell the news better than word of health, healing,beauty, safety, caring and informative non-distress-causing reports.

I am still attending forums and reading blogs, and I find so many autistic people are so distressed, angry, unhappy, anxious and fearful. This applies not only to the autistic communities I attend on line. One only has to look at today’s headlines or watch a news report. News will inevitably tell you that things are horrible, frightening, and about to get worse. $$news$$ will be happy to tell you all the ways you are about to suffer and how others in far away places are suffering or about to suffer as well. It will show you how many people hate you, tell you why, tell you every mean and horrible act that one person or group has done to another.
$$$ are there in every report you buy into $$$ and they keep escalating the horrors so they can sell more advertising and make more money. Don’t buy into it!

I have never had a “filter” for images, and never been able to tell myself “its over now, they are not suffering” or to separate myself and my own emotional experiences with those of others, remaining aloof and unaffected. Each horrifying image, report, sound (such as distress, grieving, painful crying or fearful screaming) Stays in my head and repeats itself with nowhere or no way to remove it or soothe it. I put this down to my neurology and my inability to process visual and audio input in the way most people seem to do. But such anguish and distress seems to be everywhere these days, not just in the autistic community.

Have you noticed? Did you ever ask yourself why?

I learned a long time ago that I simply can not listen to the news, watch it, or see photos or read reports of painful and distressing traumas, fear causing “what if” events, nor can I assimilate the huge deliberately pain-distress-fear-anxiety-anger-causing, emotionally provocative input of so many web sites, newspapers, or other printed matter.

I have learned that to survive emotionally and remain functional, I must be very careful of the “input” I get every day. Add to this inability to process upsetting things, the daily load of worries over things like jobs, health, family, demands of your “out of the home” commitments such as volunteering or participating in community events, and you will understand why it is so very difficult to maintain a steady attitude and a feeling of stability. I suspect this is true for all humans in varying degrees. How would I know for sure, though?

Here are things you can do to help yourself avoid overwhelm, shut down, melt down, anxiety and perpetual distress.

1. Consider controlling the “input” you are forcing yourself to deal with daily. Do we need up to the minute reports on the election, the hatred of one group for another, the horrible ravages of every tragedy occurring all over the globe, the sights and sounds of so much distress, fear, rage, etc?

Choose to visit a news website once a day instead, or to watch one tv broadcast, listen to one news report on the radio. Do you need to subject yourself and those around you to the constant battering of so much emotional (for the $$$ media company’s $$$ profit!)
You already know that distress and emotional turmoil are what is used to market today’s news. “if it bleeds it leads”… the more upsetting the news, the more likely somebody is to tune in, buy the paper, etc etc… “$$$gotcha$$$” Do you need to experience every one of these painful reports repeatedly? Why?

2. Consider whether you need to attend every holiday party, or even one.
Decide: If anybody in your household needs to attend every class, group meeting, visit or activity the season offers.

3. Do you need the media blasting away in the background all the time? Can you substitute music or nature sounds, silence or something like a “white noise” machine instead?

4. Are you playing over- stimulating games with loads of disturbing graphics that create a sense of urgency ( especially meant for video-gamers). Can you substitute others, watch a documentary, nature videos, take a break to take a walk or a hot bath or to prepare a “real” complete sit-down meal or to do a hand’s on craft, artwork or something that involves all of your concentration without the perpetual demand to process distress? You can be activating your fight/flight anxiety response over and over instead of finding peaceful and interesting things to fill your time with.

5 If you are a reader, do you read nothing but upsetting, graphic, anxiety causing stories? Can you change to another topic, read non fiction, read blogs, studies, feature articles about other topics that interest you? If you have a ‘special interest’ or hobby, can you read about those instead, or at least substitute some of the input for things less likely to create feelings of stress or distress?

6. The human body evolved to be in motion. It is not natural for us to sit for most of the day in artificial light. Why not make motion of any sort at least part of your day? Your moods, anxiety level, and attitude may show improvement, let alone the health benefits.

7. Remember the old saying about “accept the things you can’t change, and change the things you can, and have the wisdom to know the difference” .

I have almost completely cut out and shut out all of the things I have no control over. I check news once a day in print using a source that is not prone to graphic images. I am sure I will hear if doom is on the horizon, if there is some huge catastrophe I need to prepare to move my household or myself to safety for.

Otherwise, I let those who are in control of those things take care of it all.
My job is to care for myself and those I care about. I do this to the best of my ability.
I practice responsible behavior and “adulting”, do my civic duties, volunteer for things I think are important, donate to causes I believe in, but I deliberately turn my back on so much of the hate, horror, distress and fearful things reported in the media daily.

If you are constantly distressed, angry, fearful, or overwhelmed, perhaps you can find ways to reduce the input that feeds those feelings. It is something to think about.

Autism Tools You Can Use

Ways to help you get through autistic struggles

Chances are you already use a few aids or tools to help you survive and thrive in every day activities. Once I learned about my autism and the ways it works in my interactions with the world, I found things to help me deal with struggles in ways I had not thought of before.

It has taken a couple of years and lots of study and thought to understand my worst autistic struggles. I know my strengths and weaknesses within the spectrum fairly well. I have learned “how to be autistic” from others with more experience, and many have shared what works best for them in many struggles. This is a partial list of tools to use to help you get by every day. By knowing my diagnosis, I learned that I could make my own struggles less by planning ahead and using certain tools in new, very deliberate ways.

Sensory processing issues are at the heart of autism.
Things like sensitivity to light can be helped with dark or colored glasses, light blocking curtains, adjustable blinds, rheostat switches on lights so the brightness can be adjusted.

Using different type light bulbs or different wattage around the house, wearing hats with brims, sunglasses, using a parasol or umbrella, can all help regarding issues with light.
Plan ahead for circumstances you can predict. I keep sunglasses in my car, my pockets, and my back pack for driving, stores and other public places, beaches,etc, and the ones at home are for gardening, taking out the trash, walking the dog… etc etc.. Keeping several pairs of sunglasses handy is new to my knowledge of autism. Before I used sunglasses if I remembered them randomly or when I could find them. I made them easier to use by having many pairs in special places. Today they are a tool I use to make my life more comfortable.

Ear plugs, noise cancelling headphones or listening devices can be used for the person who has auditory struggles and needs to isolate from noise and chaos.
I carry sets of ear plugs in all the places I put my sunglasses. They come in handy everywhere and reduce the stress of areas with lots of background noise, sudden loud noise, ( I watched the 4th of July fireworks this year with ear plugs… best yet experience).

Noise cancelling headphones are great, and some people use audio devices the same way, just plugging in to music and hiding the noises of crowds etc in that way.
I do not do well listening to headphone music etc because for me it adds to confusion and is too much stimulation to my already over stimulated brain in those situations.. it is distracting and or disorienting and for me unsafe to use outside my home or in the car. You might have to experiment with music to see if it hurts or helps in your own struggles.

Proprioception problems can sometimes be helped by wearing certain items such as weighted vests or very tight clothing. If you feel more “wobbly” or fear falling as you get older, you might see if physical therapy could help. Check with you doctor! Certain exercises for balance and motion can be obtained from internet sources of prescribed by physical or occupational therapists. It is probably better to involve a professional because of the chance of not performing the exercises correctly and thereby not getting the benefit of the efforts.

Using a set of walking sticks or other tools may give you more input as to your surroundings.

Using a walking stick or cane will also give a visual cue when you are in a crowded situation, and people tend to notice and give you a bit more room.

Short term memory can be helped by using note pads by every phone, at your desk, in the car and in you pockets or purse.. self reminders with sticky notes can be helpful too. Calendars on the wall or on an electronic device can help. There are devices or apps that can give you an alarm to remind you of events or appointments, and there are devices or apps to help you wake up or remind you to take your pills, remind you to eat, exercise, etc.

Executive function can be helped by planning a schedule using calendar, dry erase boards, chalk boards, felt boards, placed by the door or fridge or other place where you must pass it frequently. Reminders can be posted in each room (make bed, hang up clothes, shut off lights) etc… The biggest problem in using these things is to get into the habit to remember to use them. Now I have trained myself to put everything on our calendar, life is not a scramble to remember appointments, meetings, social engagements, etc etc… it is all there in one place because we remember to put the information in place. “did you remember to put it on the calendar?” is one of the most frequently spoken phrases in our home.

Telephone had been a source of anxiety for years. We solved this by using a phone answering device… today most people have caller ID. We also used “nomorobo’ programs to screen against robot callers and dunning sales calls. Today most people only have cell phones which can be programmed to recognize only certain callers etc.

Knowing my needs and sensitivities now I can think about the things that cause me the most struggles and can take measures to make things easier by planning ahead. I can make special foods to take with me on trips. I can make sure I have my coping tools and things to comfort myself. I can plan ahead to have alternatives if things do not work out the way I thought they would. (important stuff to autistic inflexiblity survival).

I can make sure I have the right drugs in the right amounts and use a pill management arrangement to keep track of when or even IF I took the right meds today.

There are so many things we can use to help us keep our lives sorted and on track. Thinking about what will work best for us may take some time, and will change as our needs change and our lives and situations and abilities change. Take the time to think it over and see if you can apply new ways to help you have more comfort and success every day.

Things such as getting good meals might be helped by buying pre-prepared food. (now you can even order at most groceries and have things delivered without having to ever set foot in the place!) Foods that go from the freezer or deli sections and is microwavable… are easier than cooking and cleanup.. or using one of the many food-at home or meal delivery programs available in many places. This saves preparation time, helps with safety issues (burns, spills, oven left on, etc) and cleanup.

Many alternatives are available for cleaning your home and for struggles with shampoo and bathing, too.. If you do not do these things as well, there are products on the market that can help make these chores easier. Occupational therapy may also help teach you new ways to handle old chores.
Laundry will be easier if it is located on the main floor and stairs avoided especially when carrying things such as laundry baskets so that you are not able to use a hand rail.
Cleaning and home help for personal care and most household chores are sometimes available and can sometimes be prescribed by a doctor if needed.

If you do not need accommodations now, do be thinking about what may be needed in the future and try to prepare for it.

Check out agencies available, insurance coverage, talk to family or friends and ask for input. this may give some insights and also help you judge if there may be help available from them if you ever need it. ( Some people think their children or neighbors or friends will provide for them or take care of them if they need help, only to find out too late that this might not be the case) If you want things a certain way as you age, you are your own best advocate to set things in motion to make those things happen.

I know I may have struggles sorting out emotions or dealing with stressful situations. I have had struggles and depression and anxiety and have needed help with issues in the past, both for myself and loved ones. I know that there is therapy and meds that can help many of these things. If you are constantly hurting emotionally or have difficulty with anger or compulsive behaviors, please do not struggle alone. Reach out and get help. There are so many alternatives, and you are not to blame for your struggles. You can learn new ways to deal with these things. There are choices you can make, there are insights you can find, there are new ways of dealing with terrible situations in the past or present. Professional help is so valuable. You are not alone. Please reach out and seek help for painful past or current situations or disabling social struggles. I don’t regret one moment of the time I spent in therapy years ago. It changed my life for the good and better and improved my life in so many healthy ways!

Occupational therapy and physical therapy are available to help me learn new ways to do physical things which used to be easy in my youth but have become a struggle. If you have struggled with balance, depth perception, odd gaits, inability to do daily household self care or care of your home, occupational therapists can show you new ways to do things. Consulting a neurologist or other specialists can help too, especially if you are dealing with multiple diagnoses. If one professional does not help and has no alternatives, remember that you are entitled to a second opinion or even a third.. You know yourself better than anybody else does. You are worthy of being the best you can be physically, emotionally, and mentally. What can you do to make life better for yourself right now? What plans can you make to have a better future? If you can’t find a way by yourself, please reach out to others. There is help available. Make sure you get the help you need.