Proprioception

Knowing where you are in relation to absolutely everything else.


Autism is based in our bodies’ uneven neurological development.

Proprioception is the sense (based on our neurology) that tells us about our bodies in relation to our physical world.

Proprioception tells our bodies we are going fast on our bicycle, when we run, or in a car.

Proprioception helps us navigate through a crowd of people or a room full of furniture, or driving our cars or bikes, through the traffic, or walking, running or moving our wheelchairs through the, hallways, rooms, navigating doorways, ramps, etc etc successfully.

Proprioception is what helps us stay upright in rough terrain or keeps us from crashing into things.

Proprioception is what tells us how hard to hit the nail with the hammer, how much force to use while trying to open the jar lid, how hard to pull the shoe strings when tying our shoes, how hard to pull or push to open the door, etc.

We use our sense of proprioception every day to inform ourselves about how to proceed in almost any situation.

If you have been given a diagnosis or dyspraxia or ataxia, your proprioception is definitely affected.

When our proprioception is “off” we can run into furniture or smack ourselves passing through doorways, fall off our bicycles (if we can ride them at all!).

Those of us with poor proprioception can stub our toes or smack our knees, elbows, or hands repeatedly when accidentally passing to near any object, including other people.

Poor proprioception means we may be the kid in gym class that can’t catch the ball and gets hit in the face every time, instead. We are the ones who are yelled at for being clumsy, for standing or following too closely, told “watch where you are going” and “hand’s off”. It is not something you “grow out of”, but I have learned that the right kind of therapy may help in some cases.

As we age, our bodies do not have as much strength or responsiveness and we are at risk of falls. To a certain extend, we can help ourselves by being aware of risks such as marking steps, removing throw rugs, providing hand rails, and other reasonable accommodations.

Proprioceptive therapy, whether self administered or through an occupational or physical therapist can be very helpful.

Do it yourself: there are loads of videos on the internet as well as charts, diagrams, pictures, etc which explain how to help your balance and how to strengthen yourself and train your body to be able to use it more safely. The thing is, it is something that needs to be done frequently. If you do a set of exercises one or 20 times, and then quit, you gain nothing. The body needs frequent input and practice for these new ways of moving to be effective.

Join a class: There are many classes these days for seniors, either online or in person, which teach yoga, Tai Chi, and other ways of using your body for best effectiveness.

Therapy: Ask your doctor to refer you to a therapist or occupational therapist who can help you learn new ways to use your body to prevent falls and injury.

There are loads of lists of proprioceptive activities for autistic children, and many of these may also be applied to adults of any age.

Join a group: you could even form your own with one or more others interested in meeting for practicing proprioceptive exercises and outings together.

Examples of proprioceptive activities : Hiking, Biking, pushing or pulling anything, playing catch or kickball, hackeysack, or dribbling or bouncing a ball against a wall and catching it repeatedly.

Standing on one foot for as long as possible ( of course use a grab bar or other support to catch yourself if need be).

Jump rope, bounce on a trampoline or an old mattress, or simply jump up and down, both feet or one foot at a time.

walk “one foot in front of the other” forward and backward. Use a line on the ground/floor to guide yourself, if you need to.

Walk between cones, then walk backward or sideways from each side, the combinations are endless. The idea is to carefully perform each of these things being aware of your body movements, your weight distribution, and your position as you perform each one.

Shovel, lift weights, do pushups on the floor or against a wall.

there are books written about this stuff! There are so many ways we can enhance our proprioception and help keep ourselves safer from accidents and falls.
Please be aware that we as a group (autistic elders) are more prone to falls and injury as we age due to our neurology. Know that you CAN do something about that!

Most of us have problems with proprioception, but we can take action to protect ourselves now that we know this.

If you don’t know how to proceed, ask for help from others.

There is no shame in reaching out for information and learning how to do something new.



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.

Autism and Sensory Trauma

Sensory trauma explained


I don’t often post links to other pages, but I do go back to “learn from autistics” repeatedly, and I do recommend it to others who are seeking information about the experience of autism. Useful for insights about how we as autistics experience our world.

Each one of us is different, our challenges and our experiences are all different, so sometimes I do not identify with some of the people in the interview section of the pages.

This particular series, however, was so well explained and so completely descriptive of some of my own trauma due to sensory issues, that I am including it here, in hope that somebody else may benefit.

Spouses, parents, siblings, co workers, caretakers, friends, and others who are not autistic may find this website useful for understanding the “autistic experience”. Who better to explain what our world is like, than those who have lived experience???


https://www.learnfromautistics.com/autism-interview-171-part-1-emma-reardon-on-sensory-challenges-and-sensory-trauma/


In recalling some of my most traumatic sensory experience “the stairs” loom as one of my most consistent challenges.

Through second grade, the school I attended was all on one level, no stairs. Beginning third grade that changed, as our family had moved to a new city. The grade school there was on 3 levels with a huge granite staircase as the dominant architectural feature.

The stair steps were low and wide and the stair well had railings only on each side and an open inside wall from railing height and above. The echo was incredible, the height and depth of the staircase was terrifying in dimension.

The other children ran up and down the steps, pushing, shoving, some dodging in and out of the main stream. I clung to a railing trembling and carefully placing each foot, and in desperate fear of falling.

This happened going up and down multiple times a day, for recess, lunch, “gym class” etc. Those stairs were the bane of my existence and I always got in trouble for being the last in my seat, last in line, etc. I had developed the seemingly reasonable technique of waiting until the other children had gone ahead before I attempted my terrifying ascents and descents.

In every school thereafter, there was the challenge of “the stairs”. Up levels and down several times a day.

Most class changes had us hustling to try to get to our next classroom before the “bell”. I was almost always late.

In addition to this, in middle school I also contended with aggression of others, one boy in particular finding it funny to run into me in thestairs or the hallway and to knock my huge pile of books out of my arms and send them flying in a storm of paper, pencils, and leaving me bruised.

I made sure nobody was near me on those stairs, not a soul on any staircase before I attempted to navigate them.

No teacher ever scolded him, I learned to wait standing in the hallway against the wall until he went into the classroom. ( he was always one of the last in, because he stalked me, waiting for an opportunity to attack).

I was always in trouble for being late after the bell.

I was constantly asked why I was in the hallway after others had long gone.

It was simply safer to me to get scolded by an adult, than it was to risk my life and risk injury every day on those stairs with the stampeding herds. I truly felt I was in that sort of danger every time I encountered stairs.

Can you imagine living in that sort of constant fear when approaching a seemingly simple every day activity?

There are loads of other memories I have about other sensory experiences, but the trauma of stairs is still with me.

If you are autistic, I bet you can think of some sensory traumas which have been with you all your life, too.

Uncovering your hidden self

Masking, coping, avoidance and appeasement habits


Those of us who had gone through life unaware of our autism – over 5 million of us in the USA today- have developed behavior to defend ourselves, to cope, to attempt to fit in, to self protect in a world we have found mostly confusing, frustrating, physically and emotionally painful, and stressful. I lived from my earliest consciousness in fear. Fear and anxiety have been the drivers and motivation for any interactions I have had with others for the greatest part of my life. I had no idea this was so, and I had no idea how it could be changed. I had no idea that things could be different or that I could find peace. I had to have somebody explain it to me.

We learn to play roles, to try to please and appease others to avoid confrontation, criticism, punishment, being ostracized and bullied, etc. We learn when we are very young that we must depend on the adults in our lives for absolutely everything, and we often adapt our behavior to suit those who have power over our lives.

We as adults may avoid situations we know will be distressing without ever understanding why we feel so completely inadequate to cope when others seem to do these things with apparent ease.

We may have physical symptoms that are distressing and we may have been trained to ignore them or press on and force ourselves to do things even though the physical feelings are present.

Until I was well into my 30’s, I had chest pains, nausea, headaches, rapid heartbeat, shakiness and trembling deep deep inside, and often I hyperventilated.
I had no idea that these were signs of anxiety and a response to adrenaline flooding my system whenever I forced myself to do things that I was not equipped to cope with.
I was considered melodramatic, that all these things were “psychosomatic” and that I was doing it to “get attention”.

In truth I was in constant fear of failing and of the resultant anger, criticism, punishment, etc which resulted in my failures. I was having almost constant panic and anxiety attacks.

If I had learned to recognize the signs my body gave me that something was wrong much earlier in life, I may have been able to find help.

I may have been able to sort out that what I was forcing myself to do was not right for me. Instead I used appeasement behavior and tried to fit in as I was expected to.

My headaches and nausea every time we went to a social gathering, whether family, friends, or strangers, my shaking and quaking inside my stomach, rapid pounding heartbeat, nervous sweating and restless anxiety were all of me telling me I needed to escape, but I had been trained to force myself to do the things I was expected to do.

I am wondering how many others struggle through all sorts of physical symptoms of their anxiety, fear, distress, stress, and never have a clue that their body is telling them something?

When I got therapy as a young adult, I learned to listen to my body, to search for the emotions that I was expressing through my physical suffering, and to identify the specific time and place where such physical manifestations happened.

I learned to listen to that part of me and to find what I had been hiding or trained to deny in self defense as a youngster dependent on others for survival, for shelter, food, and striving in vain for approval and the feeling of safety and comfort
I was able to provide the self approval, the feeling of safety and of comfort after years of hard emotional homework, but let me tell you it has been worth it. Knowing my autism diagnosis could have helped tremendously. Knowing now gives me the complete perspective I needed “back then” when I first started therapy. I would have had much more insight into the “whys” of the development of my coping behavior.


Having a therapist or life coach to help you spot these things and help you learn from your own body’s feedback, is life changing. I could not do it on my own, I had to have the help of an outsider to be able to see what had happened all those years and to understand how life could be different and better by making healthier choices for myself and learning to do things to please myself instead of appeasing others.

Now if I feel like I want to run, to hide, to leave, to avoid any given situation, I can recognize it before my body gets to trembling, I get sick to my stomach, I have the headaches, etc. I have learned to recognize and respond to the very first signs my body gives me that “something is wrong” and to think it through to sort out the cause so I can take action.

I did not know how to do this by instinct and had been trained to ignore and deny myself any feelings or responses besides those expected of me (due to punishment and my seeking to appease those in control of my life to avoid punishment).

It has been a long time trying out and having the courage to practice new and healthier behaviors, but first I had to learn to recognize that the adaptations I had made to survive were not healthy, and that I could change the way I responded to any person or situation.
I had to learn that I could choose for myself how to respond and what to do as an adult.

Think about the ways your body might be telling you something is wrong.
If you feel sick physically in any situation, if you feel restless and uncomfortable, if you are upset and you don’t know why, it might be time to take a look at sorting old and useless adaptations of youth and discarding them in favor of new ways, new choices, new things to try to make your life better, ease the distress, the pain and discomfort, and start to find peace and self understanding.

You do not have to do it alone!

“fixing” Autism

“Now you know, so you can change that”


I encountered this in one form or another all my life.

I was wrong, I was bad, I was a problem.

By being told how I was wrong, bad, stupid, a problem, or otherwise behaving badly, I was supposed to understand and change my ways. Often this was not specific, but things like “you know what you have done”, “think about it” or “shape up”,
It was assumed at all times that I was “doing it” on purpose, no matter what behavior or lack of insight or comprehension of any given situation or actions was involved.

I see this constantly on forums, in discussions, in ideas about “autism training” “behavior therapy” etc.
The concept seems to be rooted in the idea that all I ( the autistic subject) need is to be enlightened or told and then I can willfully and simply change their behavior.
( In this is the idea that the autistic person will want to simply change!)

“what can I do to make my child like “this thing” ” “do this thing” “behave this way” ?

” What can I do to make my autistic partner more responsive to me” ?

“I love my mate but they are so socially inept, how can I help them”?
( meaning how do I get them to change to somebody who is not like that)

“I want to help my mate be a better partner, he or she ( description about all the things the partner does that are not what the complaining mate wants)”
“I care so deeply but if my partner does not do (this) I will leave them” ( its not a partnership where we work together, it is either my way or the highway)

I see this as maladjustment of the person asking the question in each of these instances. It is not convenient or easy or comfortable to change oneself, so it is easier to blame problems on the other person. The autistic child or adult carries a double whammy because, well, autism. Relationships always require the work of all the individuals involved to be successful, in shared problem solving, especially.
Subjects under a dictatorship are likely to revolt eventually.


In many instances there is a great deal that could be done if the complaining person, parent, partner, spouse, classmate, friend, etc. Would take a look inside themselves and see if there are other ways they could choose to behave or react in cases where they want the autistic person to change or “do better”.

I was subjected to rages and physical abuse, emotional abuse, manipulation, intimidation, and more, to try to “fix” my autism and make me into an acceptable form of person to my parents, my siblings, my friends, my spouse and others.
I did not do what they wanted me to, did not react or behave as they thought I “should”. My childhood and young adult life was a misery.

If your child does not do something you want them to, how do you change your actions, reactions, behavior, environment, words, schedules, expectations, to adjust to this circumstance?

If your autistic partner, friend, spouse, etc. Is doing something that you do not like, do you continue to punish, abuse, berate, criticize, harass, belittle, intimidate, scold, and shame in expectation that they will change ?

Do you just do that over and over, maybe more loudly or harshly or with more anger?

I suggest that the person who has the complaint needs to think of new ways to approach any problem, so that it is not simply up to the autistic person to change.

Instead of expecting the leopard to change his spots, try changing your approach to the leopard.

Some things are not possible due to invisible workings of our neurology. Some things may be negotiable or navigable with support and encouragement.

Constant criticism, “fixing my problem” by making me miserable because everything is all my fault for not doing better, fixes nothing at all.

Is it any wonder so many autistic people avoid contact with others ? Avoidant behavior may be considered a personality disorder, but it makes perfect sense to those of us who have lived our lives under constant demands we are frequently not equipped to respond to in the expected ways. After so many repeated social failures is it not reasonable to find relief by withdrawal?



So that’s why!

that feeling of discovery


We have all had them, those “aha” moments when ideas and details come together to form a complete idea and we finally “get it”.

I had the pleasure of spending some time with a fellow rock and fossil collector one recent afternoon. We explored and collected specimens in a local area that is well known and were able to share finds, thoughts and ideas. We had met on the internet and shared finds, thoughts, and ideas in a local collectors group for over a year, and agreed to meet “in person” for the first time to hunt specimens.

I have found this is a great way to make connections and to “find my own kind”, slowly getting to know somebody through internet interactions, messaging and emails… shared ideas, through posts in interest groups, using photos, asking questions of each other.

The transition to “real life” interaction was painless and without as much anxiety as I would have experienced in a group activity among strangers. The meeting was well planned with location, time, and expectations we both had well defined ahead of time. My slower processing speeds work better online and of course allows for better understanding.

As my companion and I walked along, sorted finds, and talked, he would ask me a question, and after I responded would be silent for a few moments, then would say
“so that’s why”.

I was charmed. I am sure I was seeing autistic thought processes in fully engaged mode.

The use of that word “why” seems to me to be a dead giveaway.

Interestingly enough, we shared similar family histories and early life experiences, had similar outlooks on life, and similar views. Like seems to be drawn to like. Life struggles he described sounded familiar to me. It stands to reason that over time some part of our selves find others we identify with, understand, and who seem to be ‘coming from the same place’.


In a world full of billions of humans I find that this seems to happen over and over. Amazing!

The “why ” questions we both asked each other (and gave answers to) were basic information sharing, about our rock and fossil collecting specimens, about geology and about others we both knew from the group, as well as about each other’s life histories and situations.
Where so many people tend to hide their struggles, many autistic people are open, frank, and direct about almost everything.

“Why ” seems to be what many of us (autistic folks) base our interactions on. We need details surrounding almost everything in order to understand.

I loved hearing my companion say “so that’s why”.
It was great feedback that meant I was with somebody who understood me and who I was able to understand as well. Finding somebody like that in today’s world is like finding a ruby in the sand on the beach. Rare and valuable, and infrequent.

Listen to how others around you use the magic word “why”. My friend does not identify as being autistic (yet).



Autism Diagnosis online?

Web-based health care raises interesting questions

With the advent of Covid -19 restrictions come new ideas for diagnosis and treatment of individuals.
Instead of going to the doctor, many are staying home in front of their computers and talking to their doctor or other health care individual using web-based technology.

This prevents potential exchange of germs/virus/disease through limited contact.
Insurance companies are beginning to approve these “meetings on line” as they would an “in person” consultation. There are loads of convenience factors and cost savings when this works well for both parties.

What about seeking diagnosis for autism on the internet using such services?

I have witnessed an increase of diagnostic services available along with “treatment” and other autism related “professional advice”, from people who claim expertise and who will give advice and diagnosis using web cams and internet messaging questions, or phone diagnosis.

This is very encouraging. Diagnosis may be available more easily without the wait and the stress of “in person” testing. How tempting !


BEWARE AUTISM SCAMS and WOO WOO

Reminder here to be wary of those on the internet claiming to be professionals, and seek verification of qualifications carefully.

I just did a quick search and found many web sites claiming to have doctors available to diagnose and help at the touch of a button.

No locations were given for their services, no physical way to contact them and their names were hidden
.
Example: Dr J had a very earnest looking profile photo of a middle aged man in a white coat and descriptions about how he cared about his patients, how he was careful and thorough, etc, supposedly in his own words, were printed below his image as quotes.

The on line ” psychology clinic” I visited had several profiles of very caring looking individuals with similar descriptions of the comfort and insight they offered along with their diagnosis and treatments.
I could not find documentation for any address, location, registration of professional groups, or other information either on the website or in on line searches.
It all looked so professional and caring, without a whit of actual concrete information to back up their claims and the identities of any individuals related to the pages.
Even superficial investigation raised more questions than answers.

I have been approached through my blog, through interviews I have given to autism web sites and individuals, and through my public email address.
Somebody can help me!!! Always for a fee, always somebody who truly cares, always somebody with flashy web sites long on “sincerity” but short on true information about location, training of the providers, professional involvement, experience, etc.
If somebody approaches you offering to help, ask yourself “why”???

Informative videos on you tube and other web locations can be helpful, but look for full identity disclosure, including verifiable information such as address,phone number, business filing and standing with local authorities, documentation regarding education and practice, etc. before deciding to use this new tool.
Will your insurance pay for it?
Will your application for aid be taken seriously when you tell the Social Services person you got diagnosis through online websites from another country?


The idea of being diagnosed from the comfort of your own home is tempting.

Do your homework very thoroughly first!

Who benefits from giving you a diagnosis? How much of your hard earned cash will you have to cough up?

Will you give your credit card number and never hear from them again?

Will the diagnosis help you obtain disability or workplace accommodations or is it the equivalent of the “5-day degree on line from our intensive courses” .

Where were the diagnostic individuals trained, how long have they been practicing, what is the phone number and address of their place of business, look past the flashy website for actual information and use your research skills to follow up the claims and verify the statements made on that web site.

Is the individual known and active in their own community? Is the business registered in that country, state, city, and are all legal requirements for practice met?


The internet is a life and sanity saver for many of us, it will be with us for a long time in the future and practices will continue to grow and change as more and more business is accomplished at the touch of a button from home or office. The web is a great tool!

Unfortunately scams and fraud are always with us. Don’t be a victim! Check out claims of training, experience, degrees, associations, Schools, Clinics, and publications, etc. thoroughly before even thinking of proceeding.

Atypical

Not your average label


I have been reading about autistic people with previous diagnoses to getting a diagnosis as autistic.

I attend discussions and online forums on various web pages every day, and also am moderator or admin for a couple as well.
I read over and over about people with diagnoses – but they are “atypical” in presentation of the labels/ diagnoses they have been given.
I am reading recent studies looking at how many older autistic adults have previous diagnoses before learning about their autism.

So many people tell of diagnosis of many sorts, but say they have unusual presentation of symptoms for that diagnosis.

Almost all diagnoses are mentioned in these discussions. Schizophrenia with unusual presentation, Bipolar, Borderline, OCD, ADHD, Depression, Anxiety, PTSD….all with non- typical behaviors, etc. you get the idea.

I just want to call to your attention that when Doctors don’t know where to put your diagnosis if they don’t know about autism, they may put diagnosis in the closest category of things they are familiar with, saying your presentation is unusual but matches most closely with… ____________. whatever the diagnosis they give you besides autism.

If you have such a diagnosis and you are still trying to find out if you are autistic, especially if you have been getting therapies, or medications, without standard response, this might be a strong clue that your actual diagnosis might be autism.
Misdiagnosis is very common because autism is not well understood among the majority of professionals today.
We may not respond to standard therapies for our “atypical” diagnosis, finding them not useful, not understandable, difficult and unhelpful, frustrating and more.

We may have been told our case is “intractable”. (nothing they try has helped).

We will not respond in expected ways to medications, either.
After all, it could be that the treatment we are getting is not for our “actual” diagnosis.


If you find yourself in such a position, it is perfectly OK to question that diagnosis. It is perfectly OK to say treatment is not helping and ask to try something else or to look at other options, even ask if diagnosis could be “something else” .

Sometimes people do have multiple diagnoses, and treatment will possibly be more complex. Knowing about ones autism as well as any other diagnosis can only help to shed light on struggles and offer new and helpful ways of living our lives.

If you have not had success being treated for your “atypical” diagnosis, you might want to look again at Autism being the answer.

Knowing we are autistic opens a world of self understanding and helps us find useful accommodations to make our lives better.

Diagnosis of Autism can be life changing, even as an older adult. The difference between my life ” before and after” diagnosis is immeasurable.

Autism associations

Regarding genetic and developmental syndromes

Today I took some hours to look at associated genetic developmental syndromes. I looked at studies from 2004 to the present , they were easy to find, there have been a lot of studies done which mention autism as associated to these syndromes, some of which are quite rare. If there was any question that autism is developmental or genetic in origin, perhaps this will be informative.

Search any of these scientifically and medically defined syndromes by name and add “autism” to the search key words for as much information as you can handle. The studies are there in significant numbers.

List from this morning’s work. Any diagnosis can be “stand alone” or it can be “co morbid”, these seem to be associated with autism often enough to have been mentioned in over 24 studies I used to compile these associated syndromes. I am sure there will be more if I continue the search and study. Do you have, or do you know anybody who has one or more of these syndromes and is/are also autistic?

Names of Genetic Syndromes associated with autism

Hamartoma
Fragile X

Cri-duChat

Tuberous Sclerosis Rett

Down

Phenylketonuria

CHARGE

Angelman
Prader Willi
Neurofibromatosis
Laurence Moon Bidel
Joubert
Goldenhar
Hypomelanosis of Ito
Noonan
Sotos
VCF
Lebers amaurosis
Ehle rDanlos
Williams
Ludan Fryns
Coffin Lowrey
Moebius
ADNP
Cohen
HEADD
Phelan Mcdermid
Stenert
Timothy
Marinesaro Sjodgren
Smith Lenli Opitz
Coffin Siris
Duchennes
2Q deletion
De Lange
Rubenstien Taybi
MOMO
Smith Magenis
Apert

All of these syndromes involve genetic changes that cause differences in development of various parts and systems of the body. Interesting, Isn’t it?