Autism and Abuse

Abuse is reported at a much higher rate for autistic individuals.
This is a trusted web site. I don’t post many links here but the info in this page is too important to not share. Self care always first. Learn the signs of being abused and what to do about it.

https://embrace-autism.com/unhealthy-relationships/


we need to know we are more vulnerable due to our neurology and we need to learn to recognize unhealthy relationships in order to keep ourselves safe.

Like other parts of every day living, learning our diagnosis can give us new perspective on old problems and help us sort and find better ways to live our lives. It is never too late for self care, never too late to learn new ways to survive and even thrive.

I left an abusive relationship 40 years ago after learning to be abused at home and being a victim for years.
Learning healthy self assertive behavior saved my life and my sanity.
I first had to recognize that I had been abused, and I had to learn how to take responsibility for my own life and my own “complicity” or compliance in allowing the abuse to happen.
I had to learn new healthy behavior, how to make better decisions.
Reaching out for help saved my life . You do not have to do this alone!

Please take care of yourself, you are worthy of happiness, comfort, being loved, finding peace and self understanding. ❤

Autism and Sorting Emotions

Do you know and understand your emotions?


So many of us have been trained to comply, trained in obedience, trained to respond in only certain ways to certain demands by others.
Many autistic individuals on forums I attend have said they learned to disregard their feelings because they were told over and over that it didn’t matter, they must do what they were told from a very early age. “do it” nothing else was discussed or explained.

Regardless if the emotion was fear, anxiety, sadness, anger, their emotions were disregarded and told either verbally or by actions that what they felt was unimportant.

I internalized this to a great degree, since insisting on my own opinion led to punishment even before I could talk.

Resistance was futile, trying to give my opinion or have any influence on my own situation regardless of discomfort or upsetting circumstances, etc met only punishment, shaming, and other very unpleasant experiences.

So much easier to be compliant and to do whatever I was told, jump to it, make sure I was safe by appeasement no matter the personal cost to me. I will do anything you say, don’t be angry, don’t hurt me! That was the only way I lived for 40 years. Survival mode. I had no idea I had alternatives. I had to have it explained in detail that there were other options available. Rigid autistic thinking would not let me see this for myself.

I became depressed and anxious. I attempted suicide at age 30 and was sent to therapy.
I learned that I could not express emotions at all. I could not even find emotions to express.
3 therapists spent talk time asking me how I felt and all I could do was sit there and cry.
I said “I don’t know” repeatedly, or shook my head and remained mute. Miserable and discouraging. I had begged for therapy throughout childhood thinking it might help and when I finally got the opportunity, it seemed like it was yet another failure.

“Talk therapy” may not work with autistic individuals for this very reason. Discussion might need to be based on something else besides feelings. “what do you think happened” What seemed to be the problem? Why do you suppose they did or said that?? etc might work better for most of us. (what do you think?)

I finally found a therapist who could reach me and teach me by asking me to write and read.
I was able to write and revise letters to the person or thing that was upsetting me and through multiple revisions and reading back what I wrote, I was able to begin to sort my feelings.

I had to learn how to get angry and to sort that anger from sorrow. I had to learn to recognize frustration, I had to learn to sort all the feelings I had locked away. I had to recognize I was having these emotions and to sort out exactly what they were.
After 30 years, those emotions were locked up tight and it took lots of emotional homework and scary memory sorting to begin to understand even the most basic of my personal needs and wants.
I really had no other want except to appease other’s demands for so long, this was very, very difficult.

I wish I had found books on emotions back then, but I suspect there was little out there (I never looked!)
Today we have a wonderful tool called an emotion wheel. It actually names our emotions and helps us refine our understanding of our feelings. What a wonderful tool!
I found some good ones on the “therapysystems.co ” website,
You can find others all over the internet in a simple web search.
I know there are many children’s books explaining emotions today. Even Mr Rogers came after I was mostly grown. Since I never relied on TV It might not have done a thing for me anyway.
I can’t use video/tv etc, I rely on printed words.
Others will find video explanations useful, or podcasts.
We have so many resources to use to learn more about ourselves today. It is never too late to “find yourself” and have better self understanding.

It took a lifetime to find out I am autistic.

It is taking a lot of time to find the “holes” in my life experiences and to fix them.
Life has never been better.

If you have problems with outbursts or upsets but can’t define exactly why you are upset, if you cry easily, anger easily, or mostly feel not too much of anything, learning more about emotions may help you too.
I never understood “why” I was feeling upset and anxious, I never understood why I was fearful , overwhelmed, depressed. I still can not define anything that makes me “happy”. It is still a work in progress.
I would love to hear from others who find sorting emotions a struggle. What has helped sort emotions for you?

Training me

Why some “skills training” never works

I was gratified to find this article in my mailbox recently. It is so difficult to explain sometimes

why telling me I have messed up, correcting me and scolding me, giving me “pointers” or refusing to listen to my explanations about the way I struggle to understand my world are not helpful. This article/blog makes a good start.



https://autisticscienceperson.com/2021/11/28/why-social-skills-training-does-not-help-autistic-people/?fbclid=IwAR3X5q-0JsAoDimXH7tkizE-7p7TjId4ybnGcNhU7sVQ1mth0sjJbKfK5io

I read books on “being popular”, books on “body language” , books on communication, empathy, social skills and manners, and was “taught”, “coached” “scolded” and punished for social blunders all of my life. I have tried so hard to fit in and to be aware of cues. This simply does not work for me (and for many other autistic individuals) because my “awareness” is broken. By the time my very poor visual and audio processing get through with any input, the subject under discussion has moved on and continues to progress, leaving me very far behind. I miss nuance, I miss tone, I miss subtle cues because my senses simply do not operate on a level where I can instantly and accurately interpret anything done “in real time”. I can not train my senses to pick up on cues in a timely manner, this will always be slow and inaccurate, and my understanding will always be impaired when doing things at normal speeds in “real life”. I have the same trouble watching video, movies, tv and with things like lectures, podcasts, and general conversations, especially in groups and in places where other things are going on around me, activities, background noises, other conversations, etc. No matter how many times you tell me to make eye contact, watch for body cues, listen for tone of voice or try to understand other cues which are obvious to those with normal (NT, neurotypical) sensory processing, I can not train my neurology to work faster, better, and more efficiently. For me, the best understanding of my world comes through reading the printed word and looking at charts, graphs, simple illustrations and images not in motion. Other senses are simply not reliable enough to use in every day interactions with others in a successful manner. Spending time over and over telling me I am doing it wrong will not fix it as much as I would like for that to happen. I desperately want to be able to interact successfully with others, and in quiet places with an understanding and patient other, I can many times do fairly well.
I am so frustrated with people who tell me “you can do it, you just have to try harder”. I can’t seem to explain to them that it is not a matter of teaching me what I ought to be doing, I know that full well after so many years of struggle and pain in unsuccessful interactions, even after all my study and my constant attempts to perform as expected. It has left me with a feeling of utter futility and perpetual frustration and some resentment too. I am capable of understanding how inadequate my neurology is, but all the wishing and trying in the world will not make me suddenly able to understand when my neurology is not adequate for performing the expected interaction, transaction, assignment, request, or task that I am asked to do.

It has left me with a feeling of complete futility and resignation, and I fully expect the blame and shame for my inadequate neurology to be placed on my simple ignorance, my willfulness, my lack of moral character and my stubborn refusal to cooperate out of spite, cruelty, haughtiness, pride or other assigned characteristics placed on my shoulders by neurotypical others who simply do not “get it”.

A few days ago somebody was telling me how I needed to get trained how to do a certain task involving making videos of others, and I tried to explain yet again that I didn’t think my visual and audio processing was adequate to the task.( I get motion sick among other things) I was ignored and told anybody could do it, denied that I had these struggles and that I simply was being recalcitrant and oppositional, I could do it if I would just try.

I guess in many ways our autism is very hidden. If we are good at faking it, we are then punished for the ways our neurology still can’t keep up with what is asked of us, judged as lazy, willful, ignorant, stubborn, and uncooperative, even accused of being passive aggressive when we fail at expected tasks .

I came home feeling like I was going to vomit, with a severe headache, neck and shoulder aches.
Once again I may have chosen the wrong group to volunteer for. I seem to be OK in very small groups, although I am exhausted after a meeting, but if I continue to come home not only physically and emotionally exhausted but also sick from the struggles of trying to “keep up” with what is happening in “real time” this is yet another failure at attempts to interact with others as a volunteer or to be useful in meaningful ways when interacting in “real time” with others.

You’d think I would have learned what doesn’t work after years of failed attempts, wouldn’t you?

It simply does not work to try to teach ourselves how to do things that are neurologically impossible for us. It simply does not work to tell me how I have failed in so many ways. I am painfully aware of this. I am made to feel the failure and the shame, It is not something I will get over by willpower and “training”. My neurology is what it is.

No matter how self aware we are, no matter how much we try, autism makes us different, autism is often a struggle, autsim is a core and essential part of who we are and who we must live. No amount of willpower or training will change my neurology.
Today is “autism awareness, autism acceptance, neurological diversity day” .

Autism and burnout

Self care always first


Burnout is common among autistic individuals since it takes so much energy to participate in every day life and all it entails. Most things that come naturally for NT (neurotypical or average) individuals are a struggle for many autistic folks, form daily activities such as shopping , workplace demands, housekeeping, care of family and trying to keep up on friendships and other important relationships. Even special interests can be all consuming and draining of energy, especially if there are a lot of other demands in one’s life.

I began to suspect my autism diagnosis about 6 years ago and spent several years studying autism, learning about it online, reading books, articles, blogs, and participating in forums for up to 5 hours almost every single day. I began to blog, have been trying to work on a book about adult autism, and attending several forums, being admin and moderator for several autism pages as well. Autism has become a second career. Add to that recent speaking and volunteering for a “lifelong learning” group at our local community college.

I could sustain that pace indefinitely but find I am exhausted now and in mourning. Our old dog is leaving us little by little. We will soon have to make a decision about putting her down. Mean time I am getting up every 2 hours every night to make sure there are no “accidents” in the house. This is leading to exhaustion and feeling tired most days, napping for a couple hours off and on during daytime hours. I am feeling very drained physically and emotionally. I know the physical side, not getting enough rest, contributes to the limited emotional resources I now seem to have. Depression is setting in.
Other struggles adding to this are complications and frustrations over book production and a recent bout of rejection after having been given a specific invitation to participate in giving a presentation have led to my feeling depressed and frustrated. I am glad I can recognize this right now and try to change things. Self care always first is one of my most insistent mantras, and I plan on taking my own advice.

Time to back off and do self care. I am cutting back on my groups and passing the torch of admin and moderator on to others where possible.
I am going to at least try to keep up with the blog and spend more time doing rest and self care things.
I want to head this off before it becomes complete depression and breakdown.

If you are feeling exhausted, frustrated, depressed, anxious and overwhelmed, are you taking the time to do self care?

Random Autistic Thoughts

Things that are on my mind lately: ” aha moments”


Things are kind of quiet and sad at our house. Our good old dog is ageing and it won’t be long before we have to make a painful decision. I am getting up very frequently to let her out at night and sleep is scarce lately. I am very very tired. This will be our last dog. Our cat too is elderly and has a chronic sickness, also not doing well. We have decided it would be unfair to bring a new animal into our lives at our old age and risk leaving an unwanted pet behind if we might pass on before it does. Risks of falls and all the chores of caretaking another animal might be too much as we continue to age. Animals have always been a very big part of my life, so my mind is working on this sad transition even as I expect it is coming soon.

So these circumstances got me thinking about my own ageing process. I am 70. Women in my autistic mother’s family tend to get dementia by age 80, although their bodies have gone on much longer. I feel as if my time is running out and there is a certain sense of urgency to almost everything I write or post these days.

Random thought two days ago. I am still sorting the past and gaining “aha” moments of insight, still putting past upsets, pains and struggles, humiliations, failures, etc to rest.
My mental filing system is working well and after maybe a couple of repeats even the worst memories agree to go to the “finished business” file where I send them and don’t seem to appear.

But with those issues settled, my brain keeps bringing new experiences from the past up for examination. I am rarely truly troubled by these memories as I have alread re lived and painfully examined them over time all these years, and can readily assign them to the files as soon as I recognize they too are “finished business”.

It crossed my mind that I have known about my autism for about 6 years, had diagnosis 2 1/2 years ago in Sept of 2022. I suddenly realized that I will probably be sifting, examining and sorting the past for the rest of my life.

I have loads of difficult memories in the memory bank to work through.
I wonder if I had obtained diagnosis earlier , would this still be the case?
I am willing to do the emotional homework, it is still interesting to understand those old traumas through the new lens of my autism.

I am randomly struck again by how truly impaired my sensory processing struggles and my neurology are. I have been so interested to follow random studies and look for blogs, books, articles on pages about autism, and to follow groups online which support older autistic adults and those of us who are just learning about autism and suspecting we may be autistic .

I made a comment in one forum about some books and links that had been helpful to me, and immediately after my comment, another participant listed many many websites and youtube, twitter, and other very recent media which all involve video and visual presentations.
I realized that I have missed out on many, many sources of input because I simply can not process video content (movies, videos, moving pictures or images of any sort or real life interactions/lectures, podcasts, etc) in “real time”. I was stunned with a huge feeling of loss for my inability to participate in those things.
I have long ago accepted my limitations, so the feeling did not last long, but the infrequent self insight is always an unpleasant surprise and involves for that short time a painful feeling of loss. I know everybody experiences these feelings off and on. It just tends to be something of a surprise. Like other “aha” moments it is a sudden unexpected insight sneaking up on me.

Like the disturbing memories I must file in my “finished business” mental file, and like the sudden insight into how impaired I actually am in one way or another, I suspect that I will also have other “aha” moments for the rest of my life.
I welcome most of those insights.

I have 68 years of not knowing about my autism to sort and understand. I have far less time on earth than that to continue to work to sort it all out. I truly consider myself a “work in progress” even at this late stage of life.

Autism and speaking

Autism mutism and related vocal topics

This started out with my own struggles with selective mutism as I thought about how to explain that. But selective mutism is just the tip of the iceberg.

One of the primary defined struggles listed in the DSM in order to diagnose autism is struggles with communication.
An autistic person must by default, then, have struggles with speaking, self expression, understanding others speech or communications, and responding to such as in a conversation, taking or giving directions, understanding expectations or intent, etc..
We may communicate with written words or sign language, use a message board or an electronic device and be able to communicate, all good.
But a significant number of autistic individuals have struggles, challenges, disabilities, and problems in speaking at all.

Studies tell us up to one third of autistic individuals never speak.

Many to most others( autistic individuals) have specific trouble with self expression, either due to physical or neurological differences, or because of anxiety or sensory processing differences.

Today’s children are being screened and helped much earlier in most places in the USA and much more is understood about how to help with communication skills.
Older adults may have grown up without benefit of professional assistance and my be firmly locked into old diagnoses or misunderstandings and labels about their speech patterns, their difficulties in self expression, about their ability to understand and to be understood.

How many older adults today could be helped though new tools being used to help youngsters in clinical and professional settings today? How many older adults trapped in institutions and care homes or at home in caretaking situations could benefit from today’s understanding of neurological problems with communication and speaking. Once labeled are these folks stuck in non productive and unhealthy patterns that keep them tied to being dependent and misunderstood, frustrated and heavily medicated??
How many could have a better life through better communication now that we have learned so much about autism, speech and communication, and physical, neurological and emotional/ anxiety which lead to difficulties in communication?

Selective mutism is an anxiety disorder that results in a person’s “locking up” or inability to speak at certain times or in certain situations. Selective does not mean that one has a choice or that one chooses to become mute, but rather that it happens only in select or specific situations or conditions.
In my own experience, it seems to be that my processing of speech and hearing (which are very poor) is not fast enough to meet sudden demands. I tend to lock up when asked to respond with words quickly with expectations from others as I am pressed to respond rapidly and with full understanding.
I just can’t make myself “go” that fast! I called it “deer in the headlights” response because I freeze before I can respond, just as a deer freezes sometimes before it explodes into action.

I am fortunate to be able to speak in most situations and have got better at it with my life experience.
As a child this was truly disabling, to be called upon in a classroom or expected to interact with a stranger and being prompted to “say something” in many situations where my anxiety was already on high alert. I simply could not perform as expected. The more anxious I become the less speech I seem to be capable of, and the slower I am to respond.

Today I can tell people ahead of time that this might happen or wait for the freeze response to pass and explain (not always, opportunity to say something in social situations is often fleeting)

If you struggle today with problems in communication of any form, be assured that you have many alternatives. You can get referred to professionals of all sorts who are able to help you sort out your struggles and help you get connected with tools and training you might need to live a better life through better communication.

If you were given a diagnosis regarding communication problems long ago and told there was nothing to do about it, consider checking with today’s speech and language experts, occupational therapists, psychologists, and other professionals to see if more has been learned since your diagnosis.

There is new understanding of speech and communication today and there are so many new ways to help. There is no shame in reaching out. Self care always first!

The Nature of Autism

How Science has given new information to help us


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

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

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

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

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

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

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

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

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

Yes.

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


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

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

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

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

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

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

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

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

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

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

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

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

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


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

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


Autism and epilepsy

autistic seizures are common co morbidity

There seems to be a very strong connection between autism and seizures, or epilepsy.

Recent studies have linked both developmental neurological conditions, with some studies showing up to half of those diagnosed with autism also having seizures.

Autism has not been linked with specific types of siezures, all types of seizures may be experienced; but it has also been tied to several genetic syndromes which are also known to be related to epilepsy or seizures.


The fact that both seizures and autism are neurology based is where we are likely to find cause and effects. If you have been diagnosed with any genetic syndrome, look up the incidence of both autism in the syndrome, and of the incidence of seizures.

Only approximately 2 percent of the total population is likely to have seizures, but up to 46 percent of those diagnosed with autism ( in one study, many studies cite lower percentages from 6 percent to 33 percent) may have seizures. The disparity of study results may depend on age groups and other factors in the studies performed. Very young children or infants may not have seizures but develop them as they grow older, for example.

Much needs to be learned, and genetics is suspected to play its part.

Females seem to experience seizures more frequently than males. If you are searching for information suspecting autism diagnosis and you also experience seizures, this may be another signal to seriously explore possible autism as well.

Autism and energy

I forgot what it was like to interact in the “real world”

I have been relying on internet communications, reading and writing and conversing in emails and on forums using the printed word almost always since I have obtained my autism diagnosis.

Yesterday I gave a talk on the nature of autism for the local adult learning group associated with the community college where I live. I was video taped and participants joined on Zoom.

There were 3 persons besides myself in the studio/classroom, including the camera operator and several online. I was gratified to have the support of the group to make my presentation, since I am trying to reach out to raise awareness of autism, especially in adults.

I had forgotten how difficult it is for me to do things in “real time” .
I became anxious as the presentation went on and more questions were asked. My mind could not form words fast enough to say clearly what I was thinking and I gave inadequate answers. My heart pounded, I had chest pains, and I was shaking inside… I was essentially in flight mode, I call it “stampede mode”. But I was able to finish the talk with the help and support of those in the room with me.

Interacting in “real time” with others even in that small group was so difficult and so draining. I must use a tremendous amount of energy to perform under ‘real time’ interactions.
When my sensory processing keeps me from keeping up with events, questions and what I am seeing it takes a huge amount of concentration to focus and understand, to prepare the words I want to speak and explain things adequately .
None of my spoken words or the things I hear are intuitive or well sorted, things just go too fast for my processing. I simply don’t have proper tools to do “real time” without struggles and anxiety.
I used so much energy and was so stressed and distressed by the time I got home!
I had forgotten what a toll on my physical and emotional resources it is to interact with others in “real time”.
I am amazed that I survived all those years of not knowing or understanding my diagnosis and that I survived with luck, keeping my sanity and health for most of my life. How blessed I have been, how lucky to have made it this far.
I was acutely aware yesterday of my sensory struggles, ( my disabilities) and am worried about how it will be seen and understood by those who are just learning about autism. Maybe that is good if observers could see how I struggled. That is part of the nature of autism.

I was exhausted by the time I got home about 2 hours after I had left home, and the inner quivering did not quit for several hours.

I am determined to do this more frequently if I can find groups to talk to, to force myself to interact in “real time” to explain and interact, answer questions and raise awareness about the real nature of autism without all the stereotyping and mistaken assumptions.
It is so important to me to spread the word about autism, to explain it, to try to reach adults who missed early diagnosis because it simply was not available at the time of our childhood or young adulthood.

I am hoping I will become more comfortable and be more self forgiving of my struggles and feelings of inadequacy as time goes by. Right now part of me feels like I failed miserably.

The video may be available on youtube for a while, look under “ALL Alpena Michigan” for a series of talks from this excellent program. I have never seen myself on video before. I think I am in for a shock. ( if they post it online) I will try to post a link here if the video is shown on line.
LINK address to Youtube video, you may have to copy and paste. thank you
https://www.youtube.com/watch?v=Ol1m_tMZDi4


Resting up now and doing self care, finding my self comfort rituals and trying to figure out how to do a better job next time. Thank you all for being here!

Autism in progress

Science of autism is a work in progress

Nothing we know about autism is “written in stone”. Science keeps learning and discovering new features of autism, learning more about neurology how completely that is tied to the behaviors used today to diagnose us.

I wanted to comment on a couple of areas of growing information that seem to be related to autism but so far have not been completely proved through strict scientific tests.

More is being learned about ADHD and ADD as it has many parallels to ASD (autism). Many people with diagnoses of ADHD and/or ADD are learning they might be autistic, and many who have been diagnosed as autistic are today being diagnosed with ADHD or ADD as well. ADHD and ADD have been given more attention in the medical community and drugs are often used to try to help diagnosed persons attain more control over some of the worst struggles.

Many new drugs have been developed specifically for this purpose.
So far there are no pharmaceuticals specifically for autism, but there are many for the frequent co morbidities of anxiety and depression. (those drugs are used for folks with ADD/ADHD diagnosis as well).
Many recent and current studies are trying to sort how these diagnoses differ and how much they share in the associated neurological performance issues.
Progress seems to be so slow for the hundreds of thousands of people to whom these neurological diagnoses are given.

Another area of recent interest is something which is more rare, “selective mutism”. Selective mutism is something that happens to many people but despite the misleading title, the mutism is not chosen or controlled by the individual, mutism happens in select circumstances only, and speaking ability is entirely out of the control of the person it happens to in those circumstances.
This has been thought to happen to less than one percent of the population.
Selective mutism is also described on DSM 5 and many early studies found no connection with autism.
I read a recent paper however, which tested a group of persons who had a diagnosis of selective mutism for autism and 63 percent of those tested had scores high enough to be diagnosed with autism.
Science moves slowly. Neurological struggles have been classified by behavior for most of our history. We had no other tools available. Now with the advent of modern science with its ability to measure and test actual neurological function through scans, electronic monitoring, and so much more, we may be on the verge of being able to look at a person’s actual neurological function and see which struggles will be the worst and the best, enabling us to more accurately pinpoint useful things we could do to help.
There are loads of comparative studies and reports, and recent articles on the WWW, where you can find links to all the subjects I discuss on these pages.