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?

Autism Communication

Its not always what people think! Hyperlexia and Hyperverbal defined

Its all about words! Stereotypes of what autism “looks like” in the way autistic people behave, what we do or don’t do, etc. abound. There are so many misunderstanding about what autism “is” and how it might affect a person!!!

Here is a look at the way a percentage of autistic folks experience their world.

Most common ideas about autism include thinking that all autistic individuals are either genius/savant or that we are deficient intellectually.

Of course, like all stereotypes, there are plenty of us “in between”.

It may be more difficult to find diagnosis if an autistic individual has no intellectual deficit and is “good with words”. Autism can affect us in so many other ways!

Hyperlexia is defined as a developmental quirk: the hyperlexic person learns to read and recognize words at an extremely early age, perhaps even as they are learning to speak.
Hyperlexic individuals often read and understand words at a much higher grade level than their age peers.
As well as being able to read and understand words, it is pointed out that most of these individuals do so with a child’s understanding , so reading a novel such as war and peace, or other volumes may not make complete sense to the child in question.
Being immature in years and experiences, insights, nuances, implied references, innuendoes and other social cues may be missed, just as they might be in any other children.

It is often pointed out by mainstream observers that eventually things “even out” and peers of the early reader “catch up”.
Of course even then, some people are better with reading and writing, “good with words” than others.

Hyperverbal individuals use words vocally and with enthusiasm!
Hyperverbal children use words that are usually not included in vocabularies of their childhood peers, and this may continue throughout life, with the hyperverbal person using uncommon words and different sentence structure than “mainstream” communication.

This tendency might be called “didatic” ( refer to “little professor” and autism) and there may also be problems with prosody, the tone, rhythms, patterns of our speech. But speak we do, frequently, mostly fluently, and willingly/frequently/often about our favorite subjects.

Because the person in question (hyperlexic/hyperverbal) usually has the ability to form sentence structure and present thoughts in a relatively coherent manner, diagnosis may be denied or not suspected. “autistic people don’t do that” ( one attempt at finding my diagnosis led to this comment from the neuropsychologist – who I learned later had never identified a single autistic person in his 40+ years of practice )

I suspect that many people who participate heavily on written/messaging types of internet forums, those who blog, or write may fall into this category. That only makes sense, right?

We don’t have to be autistic to have this “good with words” characteristic, but it makes sense that a certain percentage of autistic individuals may also have “the gift of words”.

If you suspect you might be autistic, don’t let the fact that you are “good with words” keep you from exploring the possible other ways autism might be working in your life.

Now approaching 5 years from my diagnosis at age 68, I can see that hyperlexia and hyperverbalism worked against me finding diagnosis, and I do believe I exercised my understanding of words all my life and used this form of learning and communication until it grew like a muscle.

Nothing else worked as well due to my sensory processing struggles. ( 25th percentile visual processing and 35th percentile audio processing)

Words were the key to understanding my world . Maybe this is true for you or your autistic loved one too.

Autism in a Box

Mistaken thinking, ideas and concepts about Autism

From the first discovery and attempts to define autism, its origins, and its struggles, there has been a natural human tendency to assign traits to all of those who are autistic.
“autistic people don’t look you in the eye”
“autistic people think in pictures”
“autistic people have no empathy”
“autistic people are ” “
“autistic people do ” ”

There are attempts to define autism by traits of thinking, sensory issues, behaviors, and more. There are many mistaken ideas being perpetuated today, too.

Here is what everybody missed from the beginning. Each of us is completely different. Today autism is understood as being a feature of unevenly developed neurology, where some parts of our neurological systems perform amazingly well all the way to very poorly indeed.

Depending on what part of our neurology is affected, we will show very high performance in neurological testing in some areas, right down to exceptionally weak performance in other areas.
Not one of us is the same, except that our neurological functions have been affected by the way we developed. (autism)
This can not be changed by diet, medications, miracle drugs, behavior training, or any other known mode of treatment. We are born autistic and we die autistic.

There is no “look” to autism. “you don’t look autistic” is a common comment totally based in false ideas about autism.

There is no set pattern of thinking, no set pattern of behaviors, not set level of intellect, no set performance levels of any tests available to us today.
Every single autistic individual has neurology that is unevenly developed, but this can show in as many ways as there are autistic people on earth.

Some mistaken ideas and misinformation I have heard “quoted” lately.
“autistic people are many times more sensitive ( some quote(sic) 8x, 12x etc) than neurotypical individuals”
Where did that one come from?

How does one measure sensitivity levels and how does one weigh how each individual reacts to stimulus.???? Do they mean physically sensitive or emotionally sensitive? Do they mean actually feeling, or are they referring to reactivity to any stimulus?

I blame this false information on the “highly sensitive person” social movement.
This idea that certain people are either slow, stupid, sluggish, or highly sensitive and therefore somehow socially or otherwise desirably “highly sensitive”, which fashion often has tied into highly intelligent.

This theory was around in the 1800s, perhaps even earlier when body types were tied for no actual prove-able reason to certain personalities, and perpetuated by psychologist William Sheldon in the 1940s . (and by others since, as well) (this theory has been thoroughly disproven/debunked by the way)
I need to do more research for past writings to uncover the historical bias evident in these loosely associated ideas.

There are no studies or tests to prove “sensitivity”. Science has not developed this capability. Every trait described by the “highly sensitive person” social movement is frequently found in autistic individuals, yet the most recent perpetuator of this ‘diagnosis’ denies that “highly sensitive persons” may be autistic. Oh, great way to avoid stigma of the autism label and all its misconceptions, by the way.

Any statement that begins with “autistic people” and describes a single trait should be regarded with suspicion and caution.
Almost all the ideas about the way we (autistic individuals) think (heard of “extreme male brain” ?) and behave ( heard about autism and “theory of mind”??) needs to be re examined in light of science’s new understanding of autism.

Not one of us is the same. We can not be put into a box and categorized under one thought process, one neurological response, one mode of speech, behavior, ability, or trait.

More and more, those professionals and others who understand autism in this new neurological light are looking for the ways our neurodevelopment or lack thereof affect our interactions with every day living, from the way we communicate, the way we respond or don’t respond to stimuli of many sorts, to our motor and perceptual differences.

Autism is sensory, neurological, and gives us neurological struggles that most NT individuals will never experience. Our sometimes unusual , strange, or seemingly extreme behaviors may be our attempts to adapt and cope to the experience of living with uneven development of our neurology.

When people make blanket statements about autism, what it is, or what autistic individuals do, think again. Most such statements will be based in false ideas and misinformation.

Why is social isolation “bad for you”?

isolation, loneliness, autism experience is likely different, or is it?

In searching for information about autism and older adults, I keep finding generic articles and “studies” aimed at proving that if we are not interacting with others socially on a daily basis, we are more likely to die sooner, more likely to suffer many illnesses, more likely to have mental problems, etc.

It doesn’t seem to have crossed any of the presenter/ researchers minds that we may have had these troubles and problems before, rather than as a result of isolation/ loneliness.

It does not take into account at all those few of us who choose to separate ourselves from others as part of self care. (perhaps those of us who do this are statistically insignificant?) Not all autistic individuals deliberately self isolate, many enjoy a lot of social activity of all sorts.

First, I had to find out how ‘science’ defined social isolation.
here are some definitions I uncovered.
“lack of social contact or social support”

“Lack of sense of belonging, lack of sustained communication or interaction with others,
deficient in fulfilling, quality relationships .”

Loneliness is defined as ” feeling alone, isolated, perceived discrepancy between desire for contact ( wanting social interaction) and actual social contact. ”

So there is no measurable quantity or number of contacts, in what contexts, defining how frequently or of what nature, saying “this is enough”, ”this is unhealthy”, ”this is good for you” etc.

It is all vague and seems to be based partially on the perception of those doing the “studies”. Question tests have been developed. ”perceived level of support from family and friends” test asks ”How often we see or hear from others, How many others?”
”How many of these contacts do you feel you can talk about private matters with”,
and ”who/ how many of these contacts can you ask for help?”

Then there is the little test: ”do you feel lonely?” 1 Never, 2 sometimes, 3 always.

I remember being told over and over that my mother in the nursing home needed social contact with others, and they did not allow inmates confined there to stay in their rooms. It is so unhealthy!!!

Residents were warehoused in a large multi purpose room with tables and chairs, where the staff were present, up to 2 for the 40 or so individuals confined there.
The TV was turned on, blaring, and piped in music played constantly from loud speakers in the ceilings.
There were very bright fluorescent flickering lights, constant babble, screaming, crying, and roaming of individuals.
There were scheduled activities for those coherent enough to understand, exercises in the morning, simple crafts, ”baking” on one day, fingernail painting another, ”games time”, and tea parties, socials, dress up days, something every morning and afternoon every day.
I was distressed and anxious knowing I was expected to attend these things and had to take tranquilizers each time I went to visit or participate just to function in that setting for the 3 or 4 hours I was there.
This was long before I understood my own autism and eventually after I was diagnosed, my mother’s autism as well. Knowing may or may not have helped!

I think the claim of “having to have social interaction” is a good excuse for warehousing populations of elders and keeping them confined while the business of cleaning all rooms, collecting and distributing laundry, feeding and washing/ dressing individuals goes on with very limited, over worked, underpaid, limited staff.
It is a claim to justify warehousing ‘management’ technique.

I can’t say this is true for all nursing facilities but it certainly happened in the facilities where my mother was confined ( she had dementia, Parkinson’s, other health problems that needed constant attention, and she did not sleep at night, making it impossible for me to care for her at home). Mother was confined to a “memory care” unit which was locked to keep inmates from roaming and getting lost.

Of course each individual needs different levels of interaction with others.

I think those of us with autism may choose deliberately to self isolate to control anxiety due to constant over stimulation, feeling more comfortable in our own company than that of strangers, multiple others, group activities, or demands for social interaction which frequently overwhelm us.
For many others, it may be true that social interactions of the kind described earlier are fun and enjoyable, desirable and sought after. Such studies and tests may be aimed once again at the neurotypical population.
But I wonder deeply at the motives behind such testing and classification of individuals, and I worry about being lumped into the mix, with my loved ones being told “it is unhealthy” for me to be “isolated”. Who gets to define what isolation is?

Who defines what my level of loneliness is, and what self care and self regulating behavior is healthy, meaningful, useful, and who gets to decide how lonely, distressed, and impoverished I might be if I am placed in a situation where so much mindless overwhelming activity and stressful expectations are parts of every day life, multiple times every single day. ????

As I age and health issues creep up on me as a part of ageing, these things weigh more heavily on my mind.

I have had a talk with my closest family members, defining what I hope will happen if I am ever unable to care for myself or make decisions for myself.

If you are older and looking at end of life issues, it would be a good idea to become a self advocate and let others around you know exactly what your wishes would be in any number of possible situations.

Knowing about my autism has allowed me to find new perspective on my past, my own behavior and my strengths and weaknesses. It has allowed me to look at the future in a healthy way and to plan for eventualities.
Most people spend at least 30 days in hospital or nursing homes as their end days approach. Plan now, prepare for the worst, hope for the best.

Let others know what you think about these times of our lives.

Autism and Maladaptive Coping

(when we learn to defend ourselves against life in unhealthy ways)

Ok, so first, what does “maladaptive” mean?
Maladaptive is a description which means “bad adaptive” and it refers to the unhealthy ways we may learn to cope with our life situations.

Maladaptive behaviors are those which might have worked at one time to help us escape some of our struggles.
We develop poor coping skills in self defense, especially when we must find ways ourselves with no guidance, input, insights or role modeling from others to help us.

Maladaptive thoughts or beliefs may be ones that we used to explain our struggles and reasons for the conflicts, misunderstandings, or other troubles in our lives.

Most of these behaviors, thoughts, and beliefs are learned when we are quite young.

Maladaptive thoughts and behaviors are not exclusive to autism, anybody can develop them, but perhaps because of autism’s struggles with social interactions and communication, we may tend to develop such self protective thoughts and behaviors more frequently.

I just read a paper which polled psychologists working with autistic individuals and all of them said they had never met an autistic that did not have some degree of maladaptive behavior and/ or thinking.

This would especially be true for those who did not have positive role models, explanations, and emotional support in our lives, or those of us who grew up in unhealthy situations where poor coping or unhealthy behavior was present to begin with.

Examples of maladaptive behavior would be fearful or aggressive behaviors (meeting every life challenge with fear or anger), belief that we must always please others, that it is our job to see that everybody is happy, that we must strive to please, to make sure nobody gets angry with us, that we are always wrong.

We might think that others are always wrong or “against us”, that nobody is responding to us when we want them to or in ways we want them to, so therefore nobody cares!
The list goes on.
Maladaptive behavior can be self injury or addictive behavior/substance abuse, enforcing and insisting on rituals or certain other ways to comfort or “protect” us.
We might believe that certain people or groups of people are out to get us, hate us, or are otherwise the cause of our problems.
We might think that if only we found a love partner, lived in a certain place, had a certain job or a certain possession, won the lottery, our lives would be changed and everything would be the way it is “supposed to be”.

You can see how complex and varied these maladaptive thoughts and behaviors can be.
With nobody to advise, explain, guide, mentor, we have been left on our own to figure it all out and most of us simply did the best we could to survive. Most of us got some of it wrong!

The good news is that once we are aware of our unhealthy thought and behavior patterns, we can work to replace our old thought and responses with newer and healthier ways.
Like any habit, we can learn new ways to do it!

I had a number of maladaptive thought patterns and behaviors that I had learned and used over my early life time.
The family I grew up in had many poor coping skills and patterns of manipulative, shaming and blaming behaviors and thoughts.

With the help of a counselor I learned to recognize unhealthy manipulative and coercive communication and replace it with healthy self assertive communication , and how to defend myself against such behavior and communication from others.

I learned that many of my beliefs about my self, my life, the way others treated me, the things that happened to me, were unhealthy and simply not true. I had to learn about the actual nature of healthy relationships, healthy behavior, healthy self care and setting boundaries, and so much more.
Many young people learn, or can see these things for themselves as they grow and mature, and many others may need help, guidance, explanations and coaching to find healthier and more productive, less emotionally painful ways to live life.

Looking back on my early years, I can see how absolutely desolate of life skills and insights I was, as autism, my unhealthy childhood ‘roots’, my unhealthy maladaptive beliefs and lack of the tools I needed to interact in healthy ways with the world around me was disabling and painful.
I could not find my way “out” without an outsider to help me understand and to see where the behaviors I relied on to survive were no longer working and that I could replace them with other more functional and effective tools which I could use every day to have a better life, better relationships, better understanding of my world.

If you are struggling constantly, are in emotional pain, if you can’t find a way out of your daily misery, anxiety, and emotional pain, I urge you to find a life coach/ therapist/ counselor or mentor to help you sort the coping tools you are using, discard the unhealthy, maladaptive ones, and replace them with better ways to move forward in life.

If I could do it, I believe almost anybody can. It is emotionally scary. for many of us, it is almost impossible to see or say “I was wrong” in my beliefs, in the way I tried to handle things, in the ways I learned to cope.
I was wrong ,as in mistaken.. yes, not bad or shamefully wicked, not to blame : I had used the only tools I had available, that was not my fault, it is not yours if you are not coping well, either!
I got a new box of tools, and I haven’t regretted it for one moment. Life has been so much better!
Join me, won’t you?

Autism history (my own)

Thinking about what I have learned. Random thoughts and insights .

It has been about 7 years now since I began to suspect my autism diagnosis; the blog here just celebrated its 5th birthday, and I got a professional autism diagnosis two days before I turned 68 years old, that would be 4 years ago.

I have had time to sort my autism, understand autism’s history and my own personal history.

I have been able to finally understand how autism worked in me and my family situation and my young adulthood right through middle age and retirement. Yes, that is right, I never knew about my autism until after I was retired.

All that happened , I had spent most of my life in struggles related to my autism before I understood I am autistic, and have been from the moment of my birth. Nobody knew!

It has taken me a long time to recognize and realize how difficult things are for me, compared to those all around me. I am truly impaired, truly disabled as a part of my autism. I had no idea!

Things others do with ease requires a great deal of effort for me to perform, and in a lot of cases, my neurology is simply not up to the job.
It has been humbling, humiliating, fills me with dismay when I remember all the social struggles with others and see how I “didn’t get it” in almost all cases.
I understand now, how I caused others pain, anger, and annoyance all of my life without ever knowing; feeling helpless, hopeless, abused and rejected but never understanding all the “whys” behind it. Nobody knew!
All my life I was told I was not trying hard enough, not doing enough, being a jerk, being deliberately malicious, cruel, thoughtless, I could do better, I should snap out of it, shape up, get with the program, change my ways. I was the problem in all cases and I should stop it right now!!!!

I had no idea how to do this, nor did I understand what they meant by those things, except that it was all my fault, and I was doing it deliberately, They thought I was evil and wrong, a bad person, and was told repeatedly I knew exactly what I was doing and I should stop it!

I still remember (and always will ) weeping with sorrow and helplessness through these times of blaming, punishment and shaming, and my wailing “but I don’t know how”
Every time these things happened being told “you know perfectly well what you are doing”.
Truly, I didn’t.

After a long life filled with misunderstanding, helplessness, hopelessness, emotional pain and damage, depression, suicidality and despair, I finally learned in my autism diagnostic process that I had sensory processing disorder- that I only understood 25 percent of what I saw in “real time” and only understood 35 percent of what I heard.

After having had my vision corrected in early childhood (around age 7 or 8) and having been tested as having an exceptional range of hearing from very high to very low registers, I was told I had no excuse for my multiple failures in every situation in my life, from social struggles, communication and understanding others or myself, following instructions, never being able to complete or learn any task without asking for loads of explanations and asking a hundred “whys”. Shaming, blaming and punishment were almost daily things for much of my life.

I found out there was a true neurological reason for my multiple failures.!!
That was stunning, and took a lot of time to sort.
I did not at first understand what these inabilities to process almost anything in ‘real time’ meant regarding what I was capable of, what I was asking of myself , what others expected of me.
My inability to perform as expected in almost every case was tied deeply to my autism and my neurological failings, not my personal ones! Nobody knew!

Maladjustment in coping with my struggles where nobody, including me, understood my neurological shortcomings, meant emotional suffering for me and most people who associated with me on almost any level. Nobody knew! everybody, including me, misunderstood almost everything !!! Amazing!!!

Ah, how freeing it has been to understand that my sordid, painful past was not all due to my moral and personal failures, but that my neurology was simply not set up to live life the way I was expected to, or to perform as I was expected to.

It has been Such a huge relief to know and finally understand all those painful “whys” of the past.

I have been able to forgive myself and others over all of the past. Nobody knew. Nobody understood!

Healing is taking place as I understand and adapt.

I realized the other day that I deserve huge credit for being a survivor!
How did I go through all of those things, and still manage to find sanity and be able to heal from that past?
It is amazing to me that I did not end up dead in a gutter long ago. I have been lucky and blessed in so many ways.

How many people in my age group will go to the grave blaming themselves and others and feeling pain with no escape, never knowing the answer to so may of their struggles is that one word, ”autism”. ???? My heart goes out to every single one , we all deserve to know the truth about our life long struggles.

Give yourself huge credit for finding ways to make it this far in life, even with maladaptive behavior and all the problems living without knowing our diagnosis can bring to life.
You are a true survivor!!!!

There is hope for a better future. Knowing about my autism now has been a really powerful tool, something of monumental importance – a key that opened up the insights and perspective I had lacked to understand my world. I can not begin to describe the importance this has had for me personally, and my world!

I have learned that for us, our autism diagnosis is stimulus to explore our personal experiences and traits, and at this old age, its a lot to sort!

I think I am still having those wonderful “aha “ moments of insight and understanding, and that satisfying opportunity to say “so that’s why” about still another part of my past or even my present life.

I have learned that nobody else is as fascinated or interested in my autism discoveries and insights, except other autistic individuals.

Even people who have children or partners, or other family members with autism are not as interested in the autism itself as in finding ways to work around its worst struggles. (the ones that are the worst for them, even, maybe instead of the experiences of the autistic individual in their lives).

Blogs, articles, chats, autism support groups both in person, online and using all of the features of today’s best technologies are the perfect way to share information and support each other in a world where nobody else wonders much about autism and how it affects 2 to 3 percent of the world’s population. I am so grateful for the internet!

The reason I started the blog was to explain for others my experiences in searching for diagnosis as an old lady here in the USA, my insights and the things I have been learning along the way.

In the past 5 years, much has been learned by science, with the general consensus being that autism is mostly genetic and it is developmental. The ways we struggle with autism is due to uneven growth and development of our neurology. Each of us will be different because no two neurologies develop equally . Performance on sensory tests and neurological tests show uneven performance, with amazing highs sometimes to really low performances in other sections of testing. The so called “autistic behaviors” are the direct result of our uneven neurology.

I wanted to show everything I was learning here in the blog to help others who have just begun to suspect they might be autistic as older adults, who are seeking diagnosis, who are recently diagnosed and looking for ways to make their every day lives better with self accommodation and seeking self understanding.
Everything looks different when we discover our autism.
Wishing all a Happy New Year. May the new year be your best yet!

Five years ago

happy birthday to this blog

I started writing here almost 5 years ago January 2019, in order to share details about the struggles an older adult goes through to obtain diagnosis of autism here in the USA, and to explain the need for such diagnosis even in those of us who are elderly. I hoped to attempt to share all the things I was learning about the nature of autism for those who had gone through their lives into old age without ever knowing they were autistic.

The story begins on the last pages of this blog with my first entries, so to find things that happened in my adventure, you must scroll to the bottom of the page and read backwards. Had I been more tech savvy, the blog may have been easier to use

. Old dogs may be able to learn tricks but sometimes we are slower at it, especially if we have sensory processing disorder and are autistic (this dog, me).

What a huge difference knowing about my autism and how it has worked in me all my life has made! I have such better self understanding, and am learning that it is OK to be me, OK to feel emotions, OK to be different and even to enjoy that aspect of myself.

I have learned I do not have to “fit in” or force myself to live up to other people’s expectations, to say NO to their demands, and It is not my job to “make other people happy”.

At 4 full years and a few weeks now, from official diagnosis, my life has changed almost completely.

My self understanding has changed, my ability to recognize and deal with my emotions is growing, my understanding of my very long history of misunderstandings and pain in growing up, going to school, leaving home and living an adult life, working, parenting, being in a healthy relationship all have changed! It has been a huge relief to learn about my autism and how it worked hidden all those years in so many harmful and hurtful ways. My past finally makes sense!

I have the answer to so many “whys” of my life history.
I can make a better life for myself now, with better self understanding and this new perspective.

Today autism is understood to be not behavioral, but neurological. Behaviors of autistic individuals are due to struggles with sensory processing.

Autism itself presents as uneven development of an individuals’ neurology.
We are born with autism, we die with it. There is no diet, no pill, no treatment, no supplements or special therapies that can cure it . Autism is “for life”

Knowing we are autistic helps us make sense of “what happened”, helps us know our personal strengths and weaknesses and especially important, how best to self accommodate for our own unique “brand” of autism.

When we understand our past and know our own selves well enough to understand how our autism works in us, then we have the opportunity to change our lives in our surroundings, our activities, our schedules, our health care and diet, our own struggles and how to support ourselves through the worst of them.

Diagnosis, whether self discovered or diagnosed professionally, can help in so many ways.
Diagnosis gives us a new and completely different perspective on absolutely everything we thought we knew or believed in our long and painful lives. Self understanding is so important!

There are well over 225 blog entries here, all about discovering autism, the nature of autism itself, and adjusting to diagnosis late in life.

If there are questions about those topics that you’d like to see discussed, please drop me a line.

I hope you find what you need, right here, to explain some of the painful “whys” of past life, to suggest some adjustments you can make to make life better, and to help understand your own kind of autism.

Have a happy and healthy new year, may all your dreams come true.

Positive Thinking

“gratitude is an attitude”

Of course the impending holiday of Thanksgiving inspired this! As a child with trauma and anxiety, I learned to watch and be vigilant for anything that could be scary, dangerous, possible trouble impending, etc.
The term for this is “hypervigilant”, if you want to look it up.
I also had so many negative experiences with misunderstandings and punishments, bullying, etc that I became wary of others and mistrusted everybody’s motives nearly all the time.
The term for this condition is “rejection sensitive dysphoria”.
You watch everything and suspect everybody’s motives, worry that any interaction is going to be either emotionally painful, a trap to foil you and embarrass you, or to be used to cause distress or discomfort.

I had an overwhelmingly negative attitude, and overwhelmingly sad and distorted view of my world, and an overwhelming expectation of no good to come my way.

In therapy at the age of 30, the therapist pointed out that I had developed a “negative attitude” and that it was not normal or healthy, and it was unnecessary to my life.

I had to be taught to look for positive things. I learned to look for positives in any and every situation.
The best I could find for a lot of my experiences was that they taught me “what not to do”.

Thinking negatively was a ‘self defense” habit that I had developed because I had no other skills or “tools” to use to comfort and protect myself as a child.
I had to learn how to be positive, how to be healthily self assertive in a positive and open manner. I had to be taught that I had a choice in almost everything in life. I could choose the way I responded to others, to events, to random things that happened in my life. I could change my attitude! I struggled hard with this idea for quite a while and “disbelieved” it for the most part, even as I attempted to perform exercises assigned to me around positive thinking. It was a really hard concept to grasp and put into practice. Habits of any sort are notoriously difficult to break.

It has been a huge learning curve, but I can say at the age of 72, I have been able to develop a positive outlook on life and I face each day with a less fearful and anxious attitude. Life has become better. I see the goodness in it now. Even if I have to look very very hard to find the positive in some situations or circumstances beyond my control.

How to do it? Each time you catch yourself in a negative thought, (and you will have plenty of opportunities to do that!) try to look at whatever is happening at the moment that makes you think badly about it.

Turn it around and look for something positive instead.

Instead of “I have to do grocery shopping, I hate the crowds, I hate the noise, it is going to be so difficult to get there, I hate to put away the groceries” ,
Try looking at it from positive angles.
You are able to shop for yourself, you are able to buy groceries and get what you need, you have the means to get there and the ability to do the things you need to do to get good food and bring it home.
Your cupboards will be full, you will have what you need to be healthy and strong and independent.
Some people must fight for each of those things. OK, maybe you are one of them. Even those struggles can be put into perspective, alternatives can be found, things can be done and steps can be taken to help.

Looking for alternative viewpoints in any situation can be helpful in having a healthier life, building better foundations to live in a healthy and positive way, having better mental health and finding ways to enjoy life instead of fearing it.

If you have overwhelmingly negative friends, family members, or input such as news, whether newspapers, tv, radio, internet showing life full of tragedies, sorrow, pain, suffering, it does no good to fill yourself with these things.
They are beyond your control. But you can control your exposure to them and the time you allow them to occupy your mind!
The skill of separating those things in life that you can’t control from those you can, and deciding to react in a positive way instead of a negative way can be very helpful to living a better and more balanced life.

If it distresses you and you have no control over it, put it on a shelf mentally or lock the metaphorical door on allowing it into your life and dwelling on the pain, the distress, the sorrow.

It is somebody else’s struggle and there are others “out there” working on it, trying to help it, doing something from their own ability to have control over it. You can rest and you don’t have to solve the problem, you are not responsible, others in power to help those issues are working on it!

You can choose to focus on things closer to home that you can control for yourself.

It is OK to have moments of peace or joy when others in the world are suffering, it is OK to make time for yourself to heal and to find comfort and a quiet refuge among the horror that is brought into our homes every day via media we can control.

We can say no to habitual pain, discomfort, distress, anxiety by controlling our own behavior and attitudes and our environments, the input we choose to allow into our lives every day.
Yes, that is OK.

Choose to find peace and positivity where you can and to practice self examination and learn the skills of positive thinking.

Gratitude is an attitude, it is a habit that can be developed.
You can do what is in your power to help , then let others take care of it, find the patch of sunshine, look at the beautiful scenery, read a book , enjoy a painting, listen to music, you are aware there is suffering and pain in the world. Do what you can, (maybe donate to a cause or share information ) and look for something positive in your life. Focus on finding peace and looking for good in the little things that surround us all.
I have so much to be Thankful for. Have a wonderful, peaceful and grateful Thanksgiving.

Autism in motion

Talking about the way we move and our sensory experiences

An online discussion in an autism group the other day got me looking up information on proprioception and motion in autistic folks.
I looked at several studies and was disturbed by a series of reports which discussed the differences in the way people move. Comparison was done on limited numbers of young autistic adults and children and a similar group of neurologically normal/average (neurotypical or NT) adults and children. It has been discovered that the autistic ability to adjust oneself to one’s surroundings (proprioception) seems not to rely on visual input, but other senses are used more strongly instead.

It was suggested that this finding could be used to correct the way autistic people carry themselves and how we move.

My own autisistic neurology has been tested to be 25th percentile visual processing performance, and 35th audio processing performance. My NEUROLOGY is set up differently enough that I do not function well using vision and hearing in my everyday life. I must rely more on still images, written words, and the sense of touch (smell and taste too) to get understanding of my world and to make my way. The idea of training me to use my vision to have better proprioception is ridiculous.

This goes back to the many studies that show us some little fact about a certain group of autistics studied and the conclusion that because we do things a certain way, now we know that, we can correct it.

Take it a step farther for illustration : because we know Terry is in a wheelchair and doesn’t walk, we can make Terry walk by teaching him/her to use their legs. or, taking it even to more extremes,but referring to another neurological condition (also one that appears in a high percentage of the autistic population) knowing when somebody is epileptic, learning how the seizure occurs, we can teach epileptic folks not to have seizures. Wrong conclusions.

Wrong, too, to study small groups of people, 23 in one study I read and 100 in another, and draw the conclusion that ALL of us are the same in our use of vision or any other sense.

So many so- called studies are so absolutely blind to common sense.
Studies still try to lump our different neurologies into a one- size -fits- all, “everybody all together with the same signs and struggles” with lots of assumptions about function (If a few are like this, all must be like this).
It is true that many autistic people, probably the majority of us, struggle with proprioception.
It is also true that autistics can be outstanding athletes and performers of physical feats both small and large motor oriented.

Along these lines of proprioception and motion, I found discussions and studies about autism and the need for proprioceptive input.
When we “stim” we are seeking feedback from sensory stimulus.

Swaying, rocking, spinning, flapping, slapping, stomping, throwing oneself against a wall, or the floor, biting or squeezing oneself, scratching, pinching, burniing, cutting, jumping,walking, running, etc are all seeking sensory input.

I spent a lot of my childhood doing many to most of these things to myself at one time or another. I had another of those “aha” moments recently, while thinking about this.

As a young teen, I walked everywhere, all over our town, both daytime to and from the school,( about a mile) the downtown shopping district (about 3/4 of a mile away) the library (about a mile). Then when homework and evening dinner and dishes were done and the rest of the family sat down to watch television, I left home and walked and walked and walked.
I remember walking to the far side of town and thinking I would walk as far as one street went. I ended up far out in the corn fields, barns, and unlit spaces of rural country. I walked back home, too.

I have realized how important this walking motion had been to my ability to survive my daytime life.
I was stressed all day at school, came home to even more stress, and in summer vacations was most stressed of all because even the stressful school situations were less distressing than my home life and the situation I grew up in.
My walking helped relieve the distress, tension, stress, anxiety, and gave me focus, gave me plenty of proprioceptive input in seeing new surroundings as I walked.

Feeling the ground beneath my feet, feeling my body in motion, walking over various terrains and making constant adjustments to that and allowing for avoiding traffic, avoiding other people, thinking about where to cross at intersections and how to avoid giant mud puddles, barking dogs, etc, the scents, the sounds in each place I passed through; all provided loads of proprioceptive experiences without my having to worry about the troubles “back home”.

My thoughts turned to the caged “big cats” and other animals in any zoo situation, dogs and cats kept as pets, and the horses I have worked with all these years until my recent retirement.
In cases where natural activities are restricted, these animals develop quirks and ticks of behavior. They rock from side to side, shift their feet in a specific pattern, changing balance from one foot to the other. They self mutilate, They kick the walls or chew them, or do all of the above. They may eat their own feces, urinate inappropriately, have unnatural rituals or participate in patterns of destruction of their surroundings. Check with any zoo keeper, stable hand, or kennel worker, check with pet owners!
Confinement under unnatural or stressful situations needs to provide an outlet. Those that don’t get this natural outlet will find other ways of expressing their needs.

How much of that can we apply to people confined to their homes, to support /care institutions, to hospitals and nursing homes, to situations such as schools and offices or day care?

All of it!!!

Highly intelligent in our own human way, we probably need a lot more support in those confined situations.

Humans are indeed animals, and our natural state is to be in motion.

If we provide plenty of opportunity for more natural proprioceptive input for animals in zoos and horses in stables and confined to small paddocks, or to pet dogs in apartments or houses , many of the unnatural behaviors are limited in expression or fail to appear, disappear in those with established habits.

How can we provide opportunity to move naturally for those who are restricted to rooms, houses, institutions, or other unnatural surroundings, especially those of us in “captive” situations?
Think of children at home, think of children at school, think of all those adults in any situation where their actions are constantly controlled by others.

Think of ways we might be able to help so many who self injure, have unwanted habits of seeking proprioceptive stimulation in unhealthy ways.

What can be done to help provide healthy activity instead?

There is no way to express how strong a need there is for awareness of this principle in the autistic/autism communities and classrooms, homes and institutions of today.

I read so many complaints and distressed queries from staff and family members where somebody is hurting themselves, and what do we do?

think about the multiple ways to provide proprioceptive input that might be available and pour it on!

More about ways to provide proprioceptive input soon.

Autism and energy

Autistic exhaustion : why life is harder for us.

First, let me say this is not some sort of one upsmanship social game, ” my life is harder than yours, poor me!”
I am not looking for sympathy, empathy, etc, I simply want to explain about the amount of effort and energy it takes me or most any other autistic person to do “everyday life” in the mainstream of society.

We ( human beings) all have struggles, I know, and circumstances in life can be very hard.
Consider that what is effortless and natural, maybe even subliminally understood has to be derived for most autistic people through conscious effort to focus, sort information, categorize it, decide what response is required and to call upon memory and training to elicit the “proper” response.

None of it is “automatic” or intuitive, but for many autistic folk, must be constantly viewed, heard, felt, sorted and processed before we can perform.

It requires a great deal of purposeful behavior, directed in consciously thought of and deliberately performed ways to do what most neurotypical people do from some natural store of saved information and programmed, automatically accessible responses or actions.

Many of us (autistic persons) do not have intuitive understanding about any activity or situation.
That means we have to work hard to understand and come up with the correct response.
Meantime, sensory input is not automatically sorted into background noises, background activities, which is important at the moment and which can be safely shut down (most of us can’t shut input down) and ignored. So we expend mental and emotional energy trying to sort information we recieve from all our senses all the time.

Almost every act, every word , in any social situation requires deep focus and concentration, strict control of responses to self edit and direct words and actions, and conscious attention to not only the person or persons involved in the interaction, but also to keep from being overwhelmed by the other things going on around us, by the emotional responses or anxiety to do well and not “mess up” the interactions, sort visual, audio and other sensory input and grasp what is needed to perform the interaction at the same time as trying to keep all the other sensory input from overwhelming or intruding.

Most “normal” “average” or “neurotypical brains” do this stuff automatically, but for many autistic folk each part of any activity or interaction must be consciously sorted and directed, and in so many cases, this is done much more slowly and deliberately since any response is not automatic.

The major underlying automatic response for me is to be afraid… afraid of what will happen if I mess this up, afraid of making somebody angry or annoying them, afraid of being mocked or bullied or chastised, afraid they won’t understand what I am saying or that I won’t be believed. Coping with this feeling of fearful anxiety takes energy too.

I have a terrible time trying to sort out what is being said, what is actually meant, what is expected of me, and what I should do to respond in every situation. Depending on our sensory processing, the problems other autistic folks have in interacting may be very different from my own.

Unless the setting is exactly the same every time, each experience is new and I have to decide carefully on my responses or dig through my emotional and mental response resources to draw from scripts saved in my head. This is conscious, and not automatic. I can “lock up” or “freeze” when attempting to find the correct response, especially if I feel pressured to respond quickly. Worrying about whether this “freeze” might happen adds to stress and distress of the performance anxiety which is always present in social interactions. Stress drains energy and emotional resources too!

Practicing scripts is useful, and has proved helpful over my long life, but they are only useful if I can find them in my mental files and recognize the opportunity to use them. I can get the scripts very wrong, and can misapply them, leaving aggravation or bewilderment, dismissal and rejection in my wake. So very frustrating.

Communication struggles are one of the core struggles of autism.

These struggles take place all around me every day, even at home.
It is much more difficult to succeed in interactions in unfamiliar places, places with loads of sensory input (lights, sounds, activities of people, machines, traffic, or other unfamiliar surroundings) and it takes a lot of emotional and mental energy to perform under stressful and distressing (to me) circumstances. Things many neurotypical people take for granted must be dealt with as individual actions needing sorted and active responses considered, sought and sorted from previous experiences and applied consciously rather than as simple perception and responses typical of “normal” folks.

No wonder I am exhausted after a day out, whether planned activities for fun, or things I must do as part of living life and the things life brings to us.

Emotional and mental resources give in to overwhelm. Many times after doing things in the “outside world” I come home and almost immediately require a nap!

If you are autistic, you probably understand what I am trying to convey,

If you are not autistic, I hope I have helped you understand why some things that seem so easy and simple for you are actually very difficult for many autistic persons.
I hope you will take this into account when planning activities, outings, or any other situation where you may include us in your agenda. I ask that you will help us find a way to escape the activity if we become overwhelmed, and that you will forgive us and not be offended if we don’t fully participate, leave early, or decline an invitation.

Please understand: Even the seemingly simplest activity can be very stressful and difficult for those with autistic neurology.