Autism and maladjustment or maladaptive behavior

The way we learned to cope with life may not work for us as adults

Autism works in us, and in our worlds in many ways from the day we are born to the day we die.
we have many struggles, most not visible to any human perception, which cause us to expend more energy, try harder, fail more frequently, cause us endless frustration, exasperation, shame and self blame.
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Many of us grew up with our autism working “behind the scenes” and we as well as our family/caretakers/ teachers, peers had no idea why we perpetually failed to perform as expected. Most of us learned coping behavior of many sorts to deal with the constant negative input surrounding our “failures”.
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Self blame, shame, aggressive self defensiveness, avoidance, mimicking behavior and camouflage, hypersensitivity and reactive behavior , including substance abuse, emotional or physical abuse and violence to others.
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Many to most of us reflect adaptation of our behaviors common in trauma responses, fight, flight, freeze, or fawn/appeasement.
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We may have dysfunctional family behavior patterns going back generations and including physical abuse, drug or alcohol abuse, fights and arguments, estrangements, lack of emotional care or neglect of children, and so much more. Unhealthy patterns are for the most part learned and can be “unlearned” and replaced with new and healthier behavior.
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I have come to the conclusion that autism hidden in many families includes parents, grandparents, siblings, and cousins, aunts, uncles, etc. who may also be autistic, in older generations like mine, there may be years of “handed down” learned behavior patterns that helped families live their lives (unhealthily in most cases) and simply survive around undiagnosed autism. I bet if you think about it, you can see the unhealthy family patterns of your own experience. Nobody knew!!!!!!
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The survival techniques we learned as children in such unhealthy homes rarely work well for us when we reach adulthood. Many of us have lived long and painful lives trying to use unhealthy behaviors we learned to survive in many cases even before we could speak. We may not have any idea at all that we have choices we can make every day in the way we choose to respond to others and how we may react to others in any situation.

Here’s the good part about this heritage of unhealthy learned behavior:
We can “unlearn” it.
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I was stuck in a rigid pattern of trained response to the demands of others, and I never had a clue that I had alternatives that I could choose in how to react or respond in any situation. I had to have an outsider point it out to me. I had to have “how to do it” explained to me. I had no insights or ideas beyond those I had been taught and clung to throughout my abusive childhood to survive.
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With the help of a therapist I was able to learn healthy communication, how to set boundaries and enforce them, how to recognize when I was being used, intimidated, manipulated, abused, and how to defend myself in healthy ways by making better choices and choosing from several responses that were healthier than the learned automatic responses I had learned through trauma as a child.
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Practicing new techniques and consciously applying them was very emotionally scary at first but as I gained skill through practice, I was able to become independent, make my own healthy decisions, and defend myself from unhealthy demands by others.
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I believe if I could do it almost anybody can.
Getting therapy to learn healthy communication and decision making was the best thing I ever did for myself. Therapy saved my life and my sanity, and it was not until 40 years later that I discovered the autism that worked behind the scenes in my own growing up and family life.
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Even without your therapist knowing about your autism, you can learn and grow new skills to help you interact in healthier ways for the rest of your life. Ask your therapist to teach you healthy self assertive communication , how to set boundaries and enforce them, how to make healthier choices.

There is no shame in reaching out to learn things others can teach us, there is no shame in recognizing that we need new “tools” to live healthier every day lives, and no shame in asking for help to do that.

What we learned in the past may not be serving us as grown adults, and we have so many new and different choices in tools we can use, we might just need somebody to help us learn “how to do it”.

Hope you find what you need. Don’t be afraid to explore the possibilities!

After autism diagnosis

Now what?

The word is out! More “fully mature” adults (over 50 years of age) are learning about autism and asking themselves related questions.
Am I autistic?

Statistics show there are more autism diagnoses being made in adults of all ages.

We will spend a lot of time looking for qualified diagnosing professionals , struggling to find those with actual experience working with adults autistic individuals and who are willing to accept our insurance, set up a payment plan, give us an appointment some time in the future (up to 3 years waiting time sometimes in autism clinics especially for older adults).

We will spend a lot of money driving to appointments, staying in motels or camping near by, we will be stressed and distressed and struggle to find the right professionals in places we can reach and struggle through strange places to sleep and eat, new places to navigate, new heights of anxiety and distress .

If we make it as far as getting that precious appointment, we may find we are saddled with “other diagnoses” that explain our behavior and struggles because the diagnosing individual is not actually familiar with autism and the many ways it can show itself in mature adults who have coped and adapted on their own for so many years. We may give up in despair but still believe in our hearts that we are likely autism. Self identification of autism is accepted by many autistic groups for adults because we have experienced first hand how difficult it is to find competent professional diagnosis .

So after what is likely years of focus, struggle, many phone calls, emails, in person visits,referrals, failed leads, so many inquiries, searching for diagnosis, we finally find a rare medical professional who recognizes our autism and we have a name for our struggles and distress in all the years of our lives that came before.
Autism!

We know now that we are autistic. Autism has worked behind the scenes all our lives and most of us, although we were painfully aware of being “different” but had no idea why.

Autism answers so many “whys” of the past.

It explains physical struggles with balance and coordination, it explains our difficult social interactions with others. We can understand why we find so many experiences overwhelming. We can understand how our neurology fails us in things such as sensory input.

What we see, what we smell, what we hear, what we taste, how we move, how we process our emotions may all be influenced by the neurology we have been given, present from birth, and nobody knew.
Suddenly we can begin to understand how autism had its way with us all these years. We understand why we do many of the things we have done all this time to comfort ourselves, trying to find ways to cope with stress caused by events of every day living when we have many struggles that are not visible or understandable to others (let alone to ourselves, having been shamed, scolded, blamed and punished all this time for ways we have failed to live up to the expectations of others. Nobody knew!

Now we do know about our autism, we can begin to discover all the working of autism in our every day lives. We will experience a huge range of “roller coaster” emotions from anger and sadness, grief for our lost earlier lives and the pain of our childhood and early years, right through relief, a sense of release and anticipation, confusion, bewilderment, overwhelm; we are likely to experience it all.

Here’s where I am seeing so many posts and blogs and questions. We have established lives , we have coped and made adjustments, we have worked so hard for so long. How do we proceed from here? How do I do self care, self accommodations, how do I go on, now I know about my once hidden autism. What can I do for myself to make my life with autism easier, less distressing, less overwhelming?

First thing, understand that it took you all your life to get to this point. There are no miracle “autism treatments”, no “autism drugs” , no “autism therapy” waiting for us.

There will be lots of information to sort through, lots of people wanting your money to give you special diets, special schedules, special “therapies”, special supplements and making outrageous claims for their special programs.
It is easy to get lured down a path which promises miracles. Please keep an open mind, but do your homework. Research scientific reports carefully to see if results of any program have been proven and posted in reputable peer reviewed journals and repositories of such records.

Here is the truth. We can not change our autism, but we can change the way we face and cope with so many of the struggles we are presented with each day.

Learn about your own neurology. Read and understand what autism IS and IS NOT. Figure out what your best strengths and worst weaknesses are. This is where a report from your diagnosing professional can help. Usually there are tests given and results shown as part of the diagnosis and summary of the evaluation examinations.

In autism it is typical for us to have a few very strong features, even ranging into the level of being gifted in some way. It is also typical for us to have very difficult challenges in the way we are neurologically set up to “do life”.
Using my own diagnosis as an example, I learned I was gifted with words, comprehension and usage, but I had only 25th percentile visual processing and 35th percentile auditory processing.
Thinking back I realized why I have always used reading to get information, because what I see and hear in “real life” interactions is predominantly useless to me.
I may see well due to corrected vision ( I wear glasses) and my hearing tests at very high and low ranges, I can hear more than the average individual.
BUT what I see and hear is predominantly useless to me because it is never processed, never registers in my mind at all. What goes in does not stick or register in any meaningful way, only snatches of understanding are available to me in any “real time” interaction.

All my life I was told I was not paying attention, I was not trying, I was not applying myself, that I was lazy, thoughtless, and many other labels were given to me to explain my failures all those years.

Your neurology may be completely different, with different strengths, different struggles with sensory input of one kind or another.
Look for the best and worst performances in your test results. It will give you clues. If you don’t have test results, for weaknesses, think about the things that have been hardest for you in every day life, all your life. Find strengths by thinking of the things that give you enjoyment, pleasure, or a feeling of being competent.

Now I understand what was really going on, that I have actual neurological difficulties that make many common daily activities very hard for me to perform, I can find ways to substitute activities, support my weaknesses, adapt my life to new ways of doing things that will not put such pointless demands on my neurology.

This comes at a price that might make things very difficult for you and those around you.

Things have not been working so well for a long time, trying to make those things better will shake up our routines.
Those who live with us, work with us, and interact with us daily may find those changes less convenient, may resent that we no longer choose to force ourselves to do activities that cause us misery.
Others may not understand when we begin to make personal decisions about our lives to make things easier, less distressing, more comfortable from health, emotion and mental well being standpoints as well.
When I began to look for self accommodations I realized there is a huge lack of information about all the ways we can deliberately change our lives to make things more comfortable and easier every day.
There are so many changes we can make !
We can start by finding the worst struggles, eliminating or coping with triggers in new ways, figuring out “work arounds” to make our worst problems of every day living easier to cope with.

We can change not only physical surroundings, but also our routines, our jobs, our living circumstances, our clothing, our attitudes and outlooks. Its a lot to sort!

What is hardest for you, every single day?
Does it have to do with demands from others?
Does it have to do with sensory input that affects you in unusual ways?
Does it have to do with your own attitude, expecting yourself to perform as society says you “should” and giving yourself anxiety, depression, overwhelm , meltdowns, and conflict within your home, at work, in other areas of social interactions?

Have we developed bad habits to cope with our struggles, with alcohol, addictive behaviors, street drugs, maybe neglecting our health and not exercising, bathing, or maybe we over eat?

There are all sorts of things we can change. It might take courage to find new ways, to face family members and draw the line, refusing to participate in activities they may expect of you, but that cause you distress and misery. There are many substitute activities to suggest and to try “instead”.

Take the time to think about all the ways you struggle every day.
As individual struggles, what can you change to make things work better, go smoother, be easier on your senses, be less distressing or overwhelming?

Relief does not come overnight! Expect to have to work at sorting your own autism and maybe expect to try several things before you figure out what is right for you.
Over time with many small adjustments and maybe some large lifestyle changes, you will likely find the path is smoother, the struggle is less, the rewards greater.
Don’t be afraid to sort it out and try a few changes !
Your health, well being, and daily improvement to your quality of life will be observed over time.
Things will get better. You are worth it!!!

Nobody Knew!

A lifetime of shame and blame for sensory processing disorders.

Those of us who grew up before diagnosis and understanding of disabilities surrounding sensory processing, autism, adhd, learning disabilities such as dyslexia, were blamed for our struggles.

Were you told “you just don’t try”, “you are not paying attention” “you are lazy”, “You know very well what you have done”, “pull yourself together” “get with it” and other shaming and blaming comments, frequently with punishments according to the failure to perform as expected?? So many of us lived lives of misery trying to explain how hard we were trying and being punished for things we failed at which were beyond our neurological abilities. Nobody knew.

In the days when many of us grew up, failure to take personal responsibility and to perform as expected was considered mental weakness, moral weakness, or even worse, we were given labels “stupid” “idiot” “simpleton” … you can fill in the blanks.

Many of us carry the scars of well meaning “correction”, emotional or physical, or both, testimony to the concern of parents, educators, religious leaders, and others “back then” who were advocates of punishment as the way to correct and control any failure of children right through adulthood, beginning in some cases before the child could even speak.

Today we know so much more about autism and the neurology of so many ways we struggle to perform.

This is such a relief and vindication for so many of us born before 1980, when autism was first diagnosed, when understanding of neurological function struggles was just being discovered.

We have come such a long way from those roots of scientific searches to explain why so many of us failed to thrive, failed to perform, failed to live up to expectations or to fit into society and its mandates. But many of us carry scars in our minds, hearts, souls as well as our bodies.

It was such a relief to finally understand the lifetime of failures I had lived before I got that diagnosis . “Autism” explained so much. “Autism ” answered almost all the “whys” of a long and painful life of struggles.

I never understood that I had struggles which most other people did not. What a relief! It is never too late to find new understanding .

It is wonderful to me that so many adults today are learning about autism and how it worked behind the scenes all our lives without knowing or understanding, our own or that of others.
Now we can make our own lives better through self understanding and self accommodation. We have the answers and the means to discover new tools to help us every day.

Nobody knew!

Detecting Autism

from physical clues in the Retina.

Is there a likely physical marker for autism being researched right now?

Recent studies are being summarized and new large number studies are being done to see if the results from “small number” trial studies can be duplicated and information refined.

A year or two ago an optometrist wondered if examination of the retina might be a way to distinguish autistic individuals and to be non intrusive ( no biopsies, blood samples, hair, DNA etc taken) and used as a diagnostic tool to discover autism as early as in newborn babies.

Studies have been done (and more are coming) and the results seem to show a few interesting points. (so far!)

Subsequent studies seem to prove that when children diagnosed as autistic are examined, the vast majority of them have thicker retinas and thicker coverings where the optic nerve joins at the retina than “average” or “normal” individuals.

More studies are being done to see if there are other criteria that can be gleaned.

Studies done on “autistic like” mice which have been engineered to carry several genes associated with autism also seem to show this characteristic (thicker tissue at retina and the base of the optic nerve).

Many scientific reports in journals and the news, etc. are reporting this as “fact.”

It is exciting to think science may have found an autism “tell” but here is why I would urge readers to be cautious in jumping on the “hooray we can detect autism now” band wagon.

There are many genetic conditions which frequently include autism in their symptoms. Fragile X, Ehler Danlos, Williams Syndrome, and many other known genetic syndromes/conditions have specific genetics associated with them as well.

What science may be in the process of discovering is another as yet unknown genetic condition associated with autism. As with the associated conditions referred to above, not all autistic individuals may have the genes that are present in the condition that causes thickened retinal and optic nerve tissues.

(see the genes included and known to exist in the engineered “autistic” mice and compare to the genes in the DNA of individuals included in the studies who show thickened tissue, for example.)

This does not mean that ALL autistic individuals might be diagnosed by using the retina test, only those with the specific genes which might also include signs of autism as part of the characteristics of that specific genetic condition.

Much more research is needed to make sure that somebody does not decide that if the retinas of individuals do not reflect this particular feature of development, that individual must NOT BE autistic.

Arbitrary statements in diagnosing autism abounded and were mistakenly perpetuated for years, and still are in some places today.

Today’s understanding of autism is that it is usually genetic, and that autism is caused by uneven development of one’s neurology even before we are born.

So far there are over 100 specific genes associated strongly with autism.

I hope there is much more critical research done before somebody arbitrarily decides that this potential new physical “marker” applies to ALL autistic individuals.

Watching for more reports and studies results as science moves on.
Hoping for scientific methods to be formed to ask and answer this question.
“Does this new test apply to every single individual who might have autism”???
Developments will be reported here.

Still learning, looking, trying to understand my own autism as I age. Trying to report what I am learning so you can find it here, “all in one place” rather than have to search all over the internet for clues.
It is all pretty interesting, isn’t it?

Evolution of the autism blog

My own personal blog is changing as I change

I woke up with thoughts and insights about how much my life has changed as my understanding of autism has changed and grown.
I have grown too, and it seems to me that had I known of my autism years ago I might have gained much benefit. Today’s understanding of autism has been most helpful, but of course a diagnosis until very recently would not have had the same sort of information to help me make the most of my world.

I have gone from simple wonder and gratitude and curiosity. I began sharing what I was learning as I went along, actively seeking new ways to try to reach out to individuals and groups to explain and inform about adult autism.
I began to try to show how diagnosis can benefit older adults especially, even those near the end of life, like me.

I continue to look for new information, scanning published reports and following blogs.

I participate in several adult autism support groups, and one for mixed age autistic folks as well.

I am learning that most published information from bloggers and those sorts of popup magazine like pages which have autism information meant as a 2 minute read are rarely accurate when they quote recent studies.

I am learning that blog writers often “get it wrong” too, when they use studies as reference in comments. One recent blogger claimed that studies proved people did not want to live in the same neighborhood as autistic folks, but when I looked up the study, that was a misinterpretation of what the study results claimed.

I encourage everybody to do their own research for better understanding. Don’t take somebody else’s word for it, go to the source whenever possible and see for yourself if what you are looking at agrees with what somebody else claims it does.

One huge difficulty is that so little research is being done on older autistic adults. There is very little information to glean from if we use studies as our source.
Many studies have confirmation bias, and are poorly designed, or are statistically invalid because of the very few numbers of autistic people involved in forming the group to study.
One “wild card” would skew everything on the study and all information would be suspect.
There are lots of preliminary investigations regarding autism in mice. I tend to be very skeptical of these studies because of the huge differences between mice and ( ahem) men.
If they can breed autistic mice, doesn’t that confirm that autism is indeed genetic??? (rhetorical sideline)
I have questions about the idea of autism being created in mice to begin with. Those things may be of benefit in 2055 or 2099, or they may be discarded, but anything gained is definitely not useful to me as an old lady who is fairly certain I have far fewer years of life ahead of me. Your thoughts and ideas may differ, and that is OK too. Autism in mice does not seem to apply to my own life and it seems unlikely that it will. I do not follow these studies because they will not apply to anything useful in my generation.

I am gaining confidence in my abilities, understanding my disabilities (some might say differences or weaknesses or “struggles” to stay within the politically correct center).

Knowing my strengths and weaknesses has helped me fashion a better life. I am able to make informed choices, understanding better how much energy, patience, determination, and focus it might take to embark on anything new or different. I am much more self forgiving as I recognize my problems with communication and socialization are due to my neurology and my hidden inability to understand most anything that happens in “real time”. I can allow myself to set my own boundaries and choose my own activities without feeling guilty because I do not do what “everybody else” does.

I am scheduled to do an interview for a newspaper about raising awareness of older autistic adults and the need for diagnosis. (April is autism awareness month)
I am worried about the interview, which will be face to face, and I am preparing an information sheet with facts to give the reporter, because I do not trust that I will be able to present information well in person. Anxiety will be very high and I know I do not make a good impression in person because of my awkward presentation, my slowness in understanding and my tendency to stampede in conversation when I am anxious. Years of conversational failures with strangers is not a basis to proceed from with confidence.
That is OK. If I can deliver the message that my life and my own self awareness was a far worse struggle until I knew about my autism and began to understand my past and my neurology, then I have done what I aim to do.

I am spending much more time on support groups interacting with other older adults, trying to encourage and share information that might be helpful to them as they look for diagnosis or come home with that diagnosis in hand and wonder “what is next?”
I think I am fairly well informed about autism and that I have a basic understanding of how it works in different people depending on the development or lack thereof in each of our nervous systems.
Now my work needs to focus on getting the word out.
We need more professionals who understand autism, who can diagnose autism, who can provide support in counseling and guidance in helping autistic adults to ease their struggles. This goes back to making people aware that adult autism exists, that autistic adults with hidden diagnoses are more likely to be suicidal, homeless, jobless, be low income, need health care, and statistically more likely to need help with struggles of substance abuse, mental illness, or to need assistance to access help for any of these challenges.

Please feel free to share the “you might be autistic” information at the top of the page. copy, paste, print, give to others to promote awareness of autism in adults.
Please share any information, comments, insights or words here with my permission as long as you do not use them as your own.
Please continue to help raising awareness of the great need for the growing populations of the elderly which will peak at the end of this century.
Send a note to your own local newspaper or magazines, professional newsletters, groups and pages.

There will be so much need for care and insights of all older people.
Knowing of our own autism diagnosis may help so many to have fewer struggles and to live better as we age.
Knowing autistic kids do grow up to be adults will help autistic children today have better lives as they mature.

Please join me in finding ways to bring attention to this need. There are over 5 million adults with autism over the age of 21 in the USA today. CDC and Census information statistics provided this information. ( you can do the math for yourself)

How many of us know we are autistic? I imagine that less than 1/4 of us know about our autism. You won’t find that statistic anywhere. People born before 1980 were very unlikely to be diagnosed with autism, since there was no standard diagnostic criteria at the time. Nobody began to look closely at children with autism until the 1990s.
Today’s understanding of autism is vastly different than it was in the 1990s.
When were you born?

Undiagnosed Autism

and social struggles

go together. There are over 5 million adults in the USA today with autism (age 18 to 100).

Two tenths of one percent of adults in the USA are homeless. ( Gov’t statistics)
Some studies ( or ask a social worker in the field of homelessness) suggest the actual number is much higher.

Long term unemployment in the USA is around 1 percent.

9.3 percent of the population has a problem with substance abuse.

Studies link autism to a high ( up to 36 percent) percentage of autistic people within the socially struggling groups listed above).

Statistics in studies show that autistic people are more frequently victims of crimes.

Autistic people can be prone to trauma/cptsd/ptsd because of sensory differences and struggles to understand many social interactions or situations.

Admissions to hospitals for suicidal behavior/thoughts/ treatment have been documented to be so frequently related to autism that many hospitals now make mandatory testing for autism part of the initial admission procedure for this struggle.

Studies of autistic people related to health and longevity show greater risk for multiple health problems and shorter life expectancy.

To learn of our autism diagnosis is to open new opportunities for self understanding, self compassion, and self care.

Diagnosis provides insights that allow us to use new tools for self care and healing, both emotionally and physically.

Many autistic people struggle with missed or misdirected diagnosis, frequently reporting having multiple diagnoses which had been treated sometimes for years and don’t respond in the expected manner to psychological treatment, therapy, or drugs. When autism is discovered, many of the old diagnoses are no longer explanatory of the struggles the person experiences, autism fits the criteria better. (not always, it is very common to have multiple diagnoses and still be autistic) .

Knowing we are autistic allows us to get help for our struggles in a constructive manner with our self understanding and accommodations for our neurological struggles.

If you are struggling with social problems in any of these ways, or perhaps in multiple ways,
please check out the possibility that autism might be the answer you have been looking for.

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?

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!

Adult Autistic reaching out

Self Advocacy, Ageing on the Spectrum

Advocate as noun: Person who publicly supports or recommends, or stands up for ( an idea, a person, group of people, certain ideas or beliefs)

Advocate as a verb: To publicly recommend, or support, promote, advise in favor of, stand up for or endorse ( an idea, a person, a group of people, certain ideas or beliefs)

Standing up for oneself , actively representing one’s own interests, welfare, health, well being,

Speaking for oneself of one’s needs, one’s beliefs, one’s best interests is Self Advocacy.

At my age, 6 months away from age 69 years old, I have finally become a self advocate.
Self advocacy has been one of my hardest struggles in life.
I had nobody to recognize my autistic struggles, nobody interested in helping me through my struggles as a child, nobody to speak for me in any situations I found overwhelming, frightening, distressing, or difficult in any of the very many ways I struggled.
I had been trained to be compliant in everything. Wait for directions, wait for permission, wait for somebody to notice my needs or wants.
Don’t bother people, don’t ask for things, don’t be a pain! Don’t talk to me, don’t tell me, don’t say that, I don’t want to hear that from you.

So many of us who grew up this way are simply not prepared to stand up for ourselves and ask for help with our problems.

One of the issues that comes up repeatedly on the adult autism online forums I participate in is how to overcome obstacles in our lives, from speaking out about being abused and asking for help to get safely to a new situation, about stopping bullying, about being blamed, shamed, or victimized in various interactions, including medical situations and needing adjustments or explanations made in health care situations.

One of the many problems repeated over and over are problems with misdiagnosis when people turn to professionals for help in understanding their struggles.
So many of us who seek diagnosis are handed misdiagnosis and scoffed at by those in power for thinking we might be autistic, usually then being told that we don’t fit diagnostic criteria from ages ago, with no current understanding of autism facts that have been learned in the intervening years since the days of the Doctor’s/ professional’s medical training.
One of the struggles we have in obtaining diagnosis is the sheer lack of numbers of autistic people applying for diagnosis.
If a doctor has 2 percent or less of his practice involved in the population they(he/she) sees, how much time will be spent trying to stay abreast of the most recent research and information for those issues? I base the 2 percent of population quote on the current basis of understanding of the frequency of autism in the overall population. Most of the people seeking diagnosis will be better informed than their consulting specialists unless the person we are seeing is an autism specialist.

In so many of our struggles, we know what is best for us, what works for us, what is wrong for us, yet we are somehow afraid to speak up and speak out.
I was afraid of aggression and anger from others, afraid to draw attention to myself, afraid to speak up about things that were wrong or distressing to me. I was convinced nobody cared. I was right.

Nobody does care about you like you do! Unless you speak out on your own behalf, nobody is likely to understand what it is that is troubling you, whether domestic abuse, workplace bullying, medical issues regarding your care, medications, treatment, clarifying instructions you get or attempting to get professional diagnosis.

I have several things that do not work in my favor. I have no social status, I am elderly, I am not physically appealing/attractive, I am a woman, and I am not wealthy.
I do have the advantage of previous training for diagnostic battles. Our now adult daughter struggled from an early age with many things that made life painful and dangerous for her. I got my experience on the medical battlefield when she was young, as an advocate for her diagnosis and treatment, being forced to learn all the ins and outs of insurance, government requirements and definitions of disability, researching diagnoses, finding the right treatments, understanding therapies and medications, etc etc etc.
Mother love was a great force in helping me overcome my own struggles and in learning to speak out for things that were not right for her.

Have you given thought to self love?
Our daughter was worth of fighting for, of seeking treatment for, of my learning about her struggles, learning the required rules and regulations from the government at state and national levels and diagnoses involved, how to apply for help, where to go, who to see, and my learning about medications and help that might be available. I was highly motivated.
Our daughter was/is worthy of continuing to fight for when she had given up. When she was discouraged, when she was overwhelmed, when she was in her darkest times. There has been no question of that!
Would you fight for somebody you cared about?
I think almost all of us would.
Then consider being a self advocate and standing up for yourself when you need to.
I did not think I was worthy. I still don’t want a fuss.

I still am afraid to bother anybody, still am worried about what others will say or do if I speak up. I am timid, I don’t want to annoy or anger or be the focus of negative attention that one draws if one opposes authority in the form of the doctor, the teacher, the boss, the spouse, the family… there is a huge list of people it feels unsafe to speak up to about any subject. My social conditioning is that deep it is a struggle every day to remember it is OK to ask for support, for help, for explanations, for adjustments, for changes, for things I need.

I am also learning that my life can be so much better if I ask for accommodations, if I ask questions about directions, diagnoses, treatments recommended, or even protest or contest certain proposed actions supposedly to be done on my behalf.
I am worthy of self care, I am worthy of respect, I am worthy of being heard, I am worthy of making decisions of what is right for me and speaking up on my own behalf. I had to learn this and fight to overcome my deepest beliefs about myself and my own value.

If the “professionals” you are interacting with dismiss your fears, pooh-pooh your questions, patronize you, demean you, treat you with contempt, or ignore your concerns, please report their attitudes and actions to their superiors and try to find others who will respect you and make you a partner in your own care and other interests.
You are worthy.

I am learning how to be an advocate for older adult autistic people and to educate and to encourage and to speak up whenever I have the opportunity.

First I had to learn how to love myself enough to feel worthy to speak up for myself.

More on self love soon.

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.