Diagnosis makes a Difference

3 years from official autism diagnosis

and about 6 years since I began to suspect that I might be autistic.

I have spent so many hours online reading about autism in studies, reports, articles, and interacting with the autistic communities online. I have learned so much, been able to forgive myself and others, and to have new and much better understanding of my past and my self, both strengths and weaknesses. I have been able to learn new ways to compensate and to make my own life better, easing struggles and finding new and better ways to live.


I had a test of my new diagnosis and self insights as I interacted in a “real life” group of people I had only previously interacted with online.
There were 6 of us including me. We shared activities, communication and meals together for a week.
I kept being amazed at my better understanding of the social aspects of our interactions and at my ability to “read” intent in the others and to better understand what was happening as I observed the others interacting.

10 years ago I can’t imagine this interaction and sharing having the same outcome.

I have grown so much in so many ways with the insights that knowing about my autism and my strengths and weaknesses has given me. Don’t get me wrong, I am still socially awkward and I can remember several times in the interactions that I was quite socially inept or accidentally inappropriate. But I don’t think I annoyed or enraged anybody the way I would unknowingly have provoked those responses 10 years ago.

Part of the outcome of the week’s play with others of similar interests is a feeling of enjoyment and triumph.
Serial fun without shame or regret is not something I have been familiar with up until now. Without the self understanding that diagnosis brought me so late in life, I doubt that this gathering would have been half as successful.

Here’s to older adults finding diagnosis, insight and self understanding.

My entire life and world has been changed for the better because I was able to learn about my autism.

I wish this for every autistic older person struggling with so many things in life and wondering why, why, why life seems so easy for others and is so very hard for themselves. Diagnosis can be life changing.

Feeling Safe

Safety is a basic human need.

This might seem obvious to a lot of folks, but bear with me, it struck me as something not everybody might have considered.

I participate in several online forums about autism, mostly these groups are aimed at older adults since my parenting days are over. I am still fascinated with learning about autism and finding clues to my own past and using new understanding to improve my life going forward.
I hope to share insights here that might help others.

When I started this blog I wanted to be
a sort of information sharing resource so that those older adults new to autism could find out more without having to spend countless hours on research and analysis of facts.
I do read papers, articles, studies, presentations, books, and spend many hours a day doing this and interacting with other autistic adults on line.

If you question statistics or information I provide please send me a message and I can provide links for you to look it up yourself, etc. I am interested in fact based information and prefer to use well documented sources when possible. reading other blogs and interacting with other autistic folks online helps give perspective and insights which I would not otherwise have, and heaven knows most autistic individuals love to share information!


I am still exploring ways to serve those of us older folks who are just discovering we may be autistic, helping find diagnosis, sorting out all the “what next” questions we have.
Since I am only recently diagnosed myself, ( coming on 3 years ago now- amazing!) I am continuing to explore new ideas and insights into my own life as autistic.

I am looking and finding new perspectives on almost every aspect of my own past.

I am still pulling insights out of remembered experiences, seeing them in new ways and having that wonderful “aha” moment of finally understanding one after another emotional “thorn in my paws” from my past experiences.

Last night as I waited for sleep I began to think about some of the members of groups I participate in. Some are so angry! Some are so defensive! Some are so completely distraught, caught in grief and suffering! What could be done to help? Why are these people seemingly trapped in these cycles of pain and upset?

I have been reading this morning about rumination and perseveration. I have been reading about basic human needs.

Perseveration is when we continue and persist as a pattern of thought and or behavior and have a habit or cycle of repeated thoughts, feelings, actions, which become almost automatic responses in certain situations. It is part of autism’s “rigid thinking or behavior” which must be present in order to obtain diagnosis. Not all perseveration is bad, but it can make it more difficult to break patterns of unhealthy thoughts or behavior which are not helpful or healing, or which causes us more struggles and pain.

Rumination is perseveration of thinking, cycles of bringing certain thoughts, beliefs, ideas, memories or emotions forward into our minds and working at them over and over.

We can develop a mind set of feeling resentment or anger over what we see as unjust treatment from others.


We can re-live moments of multiple experiences of emotional or physical pain, re playing the hurt and the frustration, the despair and the trauma of previous experiences.

This can be true of each of us in different ways depending on our lives and how we have interpreted the things we think we understand and what we believe.

We have all met people who seem to be consistently angry, looking for reasons to fight,
belligerent souls who seem to have “a chip on their shoulder”.
Anger is never under the surface for long. I realized these people are trapped in perseveration of the “fight” part of trauma response series: “fight, flight, freeze, fawn” . They seem to feel they need to constantly defend themselves over everything. They are always ready to attack any perceived insult, feeling of threat, opposition or disagreement. It is all personal, it is all over anything seen as a challenge or an obstacle to one’s ideas, thoughts, desires or activities. They react immediately by getting angry. They are hypervigilant to protect themselves and their interests, or of those they care about.


We have all met people who are always sad and who never see anything as good. They are worried about everything, afraid of what will happen next to make them feel used, abused, neglected, abandoned, or otherwise in emotional pain and insecure. They feel the injustices of the world, they often cry or feel constant suffering and misery. There is constant worry and fear.

These sad individuals dwell on “what next?” “what will happen if” and constantly anticipate the next trauma. They are frozen, waiting in fear for the next painful event and feeling helpless to prevent it.
I have realized these folks are trapped in perseveration of the trauma response of flight, freeze or fawning, simply waiting in dread for what they are sure is coming their way and expecting it all to be bad.

Sometimes we might meet somebody who has both anger and sadness.

I must say I relate and have been a perseverative thinker in the past.
I had habits of rumination about being treated unjustly, rejected, scorned and punished without ever knowing or understanding why these things happened. I believed I was singled out for such things, and I was right! I had deep sorrow over being so mistreated and misunderstood. I thought constantly about how hurt I felt and how sad I was that I could not change it. ( I was wrong about that!)

The rumination began, I believe, as an issue in my mental and emotional processing because I was trying so hard to come up with reasons WHY and to find ways to escape or overcome these experiences.
Autistic rigid thinking kept me from seeing I had alternatives to the strict pattern of behavioral responses I had learned in an unhealthy environment growing up and in the first part of my young adulthood. I simply could not see that things might not be the way I understood them and that the way I responded to all my life experiences could be managed in multiple other ways.

The problem was that I had developed misunderstanding of so many things about what life actually “is”.

Nobody knew about my autism or that of other family members, nobody understood the family dynamics that brought me to being such a dysfunctional mess as a young adult.
I had no alternatives but to use my own understanding and develop my own survival behavior even as a young child before I could speak.
I did not understand human emotions or behavior, I did not understand how it was that I always made others angry, or why they reacted the way they did.
I did not understand what I was persecuted and punished for, except that people said I was bad and evil and mean and deliberately did all sorts of things to them to harm them, hurt their feelings, make them feel bad! I could not understand how that was so.

Simply put, I was not able, by myself, to understand so many things without an outside interpreter until I got therapy and had so much of it explained to me. This was long before my autism diagnosis but even not knowing about the autism the therapy helped me understand much I had missed growing up. I got a lot of good explanations about healthy behavior and learned communication skills.
The biggest part of my own perseveration was fear of not being prepared for the perceived onslaught of anger, punishment, rejection, abuse, and scorn. I thought about it constantly, was quite sure i had been misunderstood, (not realizing I also misunderstood others) and I had absolutely no social skills or “tools” for communication to help myself. I was unable to see beyond the cycle of pain and upset and unable to do anything for myself but dread and remember, preparing myself for flight and becoming more and more submissive, hiding and feeling so anxious, and becoming more passive and people pleasing, appeasement responses.
I learned those responses as a helpless child and until I was taught that I had alternatives I could choose, I was trapped in that cycle.
When I began to learn I could choose my responses to others in any situation and that I could safely and successfully say NO, my life began to change.

I believe this will be the same for those of us who are trapped in anger. Life has been a fight, everything has been a struggle and a confrontation. Mindset says that one must be constantly prepared to defend oneself, to fight for rights, for access to what is needed, for recognition, for every little corner of life, one must defend oneself and one must push forward to make sure one is heard and responded to. I have not experienced this particular pattern of perseveration but I think I can understand it. I am thinking that explanations and teaching healthier self assertive communication could help with angry people’s rumination and perseveration too.

Now I come to the point I am going to make. Perseveration of emotional rumination seems to be a response to trauma and fear. It seems to be an attempt to understand and prepare for the next traumatic event. (in other words it seems to me to be a form of hyper vigilance, where we repeat these feelings over and over trying perhaps for better understanding of “what happened” as a way of being ready for the next trauma, which we are sure is coming soon). These behaviors must be based in the experience of fear.


I have said repeatedly that I have lived my life in fear. It took at least 40 years before I began to feel safe in even part of my life. I was afraid of the consequences of every single action I took, every single day. I dreaded the potential for drawing attention to myself and thus exposing myself to attack. I was afraid at home, I was afraid at school, I was afraid going anywhere in the car or walking in the community where I grew up and where I lived later. I feared encounters or interactions with others, I feared saying the wrong things, being caught in the wrong places where I could not find shelter (being bullied in quiet corners of school or being attacked walking down the street, playing on the playground, reading a book or playing in some corner of my home growing up), etc.
No place was safe. No person was safe, There were no alternatives but to face these things alone and not understanding how I could do anything differently until as a 30 year old I got a few basic explanations and began to find ways to make myself safer.

I have been reading about Maslow’s hierarchy of needs.

Look here! https://www.simplypsychology.org/maslow.html#:~:text=There%20are%20five%20levels%20in,esteem%2C%20and%20self%2Dactualization.

Those of us who did not feel physically safe, who grew up hungry ,( who worried even as small children about our homes and our security without the protection of the adults in our lives, and/or who were often victims of physical and emotional abuse), who because of our autism were perhaps more traumatized by these experiences than a child with “normal neurology” developed our own ways of self protection and care.
No wonder we could not feel safe!
Note that feeling safe or secure is one of the most basic human needs.

Now we are adults, how can we change our lives, our situations, our selves to find safety?

How can we help those ruminations and perseverative beliefs we mostly gained in childhood or before our diagnosis?
How can we find the tools and the understanding of our world as adults so that we can help the helpless child in those of us who are needlessly suffering repeated replays of trauma and emotional pain?

Do you recognize yourself in anything I have written here today?

I think that is the first step to self understanding.

With self understanding, we can look for new ways to live our lives. We can seek out new skills to communicate, new insights to help find our way through the complexities of adult lives. We can find explanations, we can learn new ways.
We are no longer helpless. Diagnosis is the key to self understanding and self help. We can find safety and we can find healing.
I know I have left a lot to think about. The idea of feeling safe is so important. This is all so new in my mind.

More about feeling safe as I am able to process this idea and to find studies and information about this topic.

Autism and Executive Function

Do we know what we don’t know, what we need to know?


So many autistic adults have had life long struggles with executive function.
Somehow we lack the skills and insights to make our everyday life “work”. We get stuck somewhere mid task, don’t start tasks, lack organization, can’t figure out how to prioritize,
have no idea where to even begin.

Have trouble paying bills on time? Trouble keeping house, doing laundry, maintaining the car, problems with clutter? Self care a problem, not getting needed health care, having healthy eating, sleeping, bathing ? Having problems with food preparation, grocery shopping, meal planning? These every day activities of healthy living are all things we need to do. They also all require several steps to perform. Executive function is working correctly when we know we need to do something, plan how we will do it, when we will do it, know which steps to take to do it in proper order, and how to start and finish. If we have multiple tasks we must figure out which is most important and put it in order of priorities. Deciding which comes first, and when we will do them.

Many of us can use tools to help us function better. We have calendars, alarms, reminders, helpers, or counselors, and we can get aid from occupational therapists or other specialists in teaching us how to assemble all the steps to do any job. This is simply overwhelming for many autistic individuals, and involves too many skills and too much sorting to “go it alone”.

There is no shame in asking others for help.

There is no shame in hiring others to do the “hard stuff” if it seems impossible to master it.

I had to learn every step of most household tasks and build on my knowledge as I was coached about how to do it. I was luckier than most because I could get information from books and practice advice on things like housekeeping, car care, health care, how to do household chores, and I could learn about making budgets, managing money, etc.

A trusted friend or family member, a therapist, or counselor can help you find tools that will work for you.

At 70 years of age, I have a built in routine of long practice. I have times and calendars to help me plan and execute most household and self care chores. I also have “backup plans” for if I miss something. I have a way to get myself back on track so that I don’t allow my whole schedule to go “blooey” and lost it all.

I also have a spouse that follows rigid routines to help keep me on the path to performance.

I have been lucky to have these things. If I had not been taught early how to do each little chore step by step, and been able to read about what I did not know and practice it, I am sure I would be struggling.

The good news is that we can learn how to do these things. We can reach out to others to get the help we need sorting out which skills we need to learn, and how to apply them, and to decide when and where, and how we will do each of these things.

If we take it one little step at a time, the skills of executive function we struggle with can be helped in many ways.

If you find yourself overwhelmed and not knowing what to do, please reach out to others to help you sort through it all and help find the right tools for healthier living.

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 extent, 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.



The cost of misdiagnosis

and missed diagnosis regarding Autism.

I have been searching and researching for information and studies, statistics, etc regarding the missed diagnosis of autism and its misdiagnosis as “something else”.

Interesting to me is that most times when I searched, I found many discussions, studies, conversations and articles about children being misdiagnosed with autism when they were not.

It seemed to me as though this is a common question among parents with newly diagnosed children. Maybe difficulty accepting diagnosis, maybe wishful thinking/ denial? I was amazed to find page after page of discussion about how this could happen.

I found very little regarding misdiagnosis of adults with something else when instead they should have been diagnosed as autistic. I have commented many times that there is a vast vacuum/ echoing empty space on the internet in place of articles about adult autism, finding older adults with undiagnosed autism, etc.

I participate in multiple on line forums especially for autistic adults. One common topic is how so many of us have garnered so many diagnoses of all sorts before we knew were autistic.
So often a forum member would explain that their bipolar, their schizophrenia, ADHD, Depression, anxiety, or their other diagnoses were atypical and did not fall into the usual categories of definition. Many have been treated for years with partial to limited success. Many have given up trying to get help because the continual lack of success is so discouraging.

Discovering that they are autistic and understanding their diagnosis had freed many from series of unsuccessful treatment attempts, from shock therapy, over medication, institutionalization or hospitalization for intermittent periods, and on and on. Traditional analysis and therapy are often unsuccessful. I went to several other therapists before I finally found one I could communicate with, who understood me, and was able to help. I was treated with medication for years for depression and even more so for anxiety.
Now that I know I am autistic I have understanding necessary to give me a great deal of relief where traditional treatments had failed.

What if all of us had got proper autism diagnoses earlier? How much emotional pain, how much suffering, how much damage due to side effects of powerful anti-psychotic medications, how many social struggles such as unemployment, poverty,homelessness, suicidal behavior, emotional outbursts leading to trouble with the law, hospitalization, etc could have been prevented?

This post breaks my usual policy of not sharing documents and links to other pages because it explains everything I wanted to explain in my blog, in better words than I could explain it. Please read and think about how much we as a society have lost with our lack of understanding of autism, lack of training specialists and giving them tools to properly diagnose autism, the lack of access to diagnosis, the struggles and troubles that could be averted if we finally understood our own autism and were able to see how to make accommodations and to use self care or access tools already available in many places to help us in ways that we need. Finally needs of older undiagnosed adults is being recognized and brought to light. The voices of many have been raised in chorus and at least in some circles, we are being heard. Feeling grateful.

https://link.springer.com/article/10.1007/s00406-020-01189-w

Autistic voice

speech. speaking, vocal expression as autistic features



One of the things that the Dr ( psychologist autism specialist) who gave me my diagnosis talked about when he was summarizing and discussing my autism was that my manner of speech was a significant clue to his diagnosis. I have been spending a bit of time learning about autism and speech. These are more clues to use if you are still wondering if you might be autistic.

Depending on studies and opinions, it is believed that from 25 to 50 percent of autistic people never speak. The percentage seems to have come down recently, probably due to better intervention and earlier attention to struggles. Science is getting better at identifying and bringing problems with speech to the attention of those who can help. Great news!

Many adults who missed autisim diagnosis still have speech struggles, from being completely non verbal to problems with pronouncing words, using them, and voice tone, tempo, expression, volume/loudness, and more.

Those of us( autistic folk) who are gifted with the ability to speak can sometimes be spotted by the way we express ourselves. Most of us have heard about “little professor” ways of speaking as being a clue to autism, for example.

Here are some common presentations of autistic speech.

Pedantic speech : Overly formal, using complex vocabulary, situation-inappropriate because of its formality or details, when simple language would do. This is sometimes referred to as “stilted speech” it is considered stiff, detailed and overly complex .

Didatic speech is speech that is like that of a teacher or lecturer… “telling, explaining, giving detailed information in a superior or pompous way. ” Didatic speech is part of pedantic speech.

Abnormal prosody of speech: Pompous, legalistic, formal, philosophical, quaint… are all forms of prosody : it has to do with intonation, stress of syllables or inflection/ expression of speaking rather than the formation of the words itself.

Many autistic people use abnormal prosody. This is what the Doctor spotted in me. I use all my words, I don’t simplify in speaking with others or in different situations. I have abnormal prosody, my speech is pedantic.

I don’t do it meaning to be pompous, I had always looked at my style of speech as “information sharing”. I love to meet others with information to share, but I have learned not many other people do!
Now I know it is inappropriate to speak in this way and I am trying to change to less formal and less information sharing ways, but a 67 year habit is showing itself as difficult to change. (work in progress) .
Have you ever been called a “know it all”??
If your nickname is something to do with encyclopedia, professor, teacher, books, etc, you might have a form of pedantic speech too.

Pitch/ tone/ volume… how loud, how soft, we speak, or if we are variable in these qualities of speech. We may speak too loudly, too softly, or vary the volume from loud to soft without taking our surroundings or our social situation, etc into account. We may not be aware of this!
Have you been told to shush, hush, or speak up at different times?

Then there is the question of “pragmatics”. Intent, usage of words in context or if they are used “creatively” as metaphors, the use of words in traditional ways allows better “pragmatics” or ability to express ones ideas.
If words are mixed, substituted, changed in form, some loss of intent to the hearer or receiver of the speech is possible.
I know many autistic people who use words in non traditional ways to express themselves.
It can be confusing or amusing to others.
Have you been teased because of your word usage, or told that you make no sense?

The more we have self understanding, the better we are able to make adjustments to help ourselves get the most out of life. Diagnosis is the path to self understanding. Diagnosis can be life changing!


Summary “so far”

This blog is already almost 2 years old!

2020 was one of the most confusing years yet.
Covid19 and its fallout have changed everything forever. Lots of us are scrambling in so many ways just to get from day to day. We know we are not alone in this.

Sorting my autism and finding ways to compensate or accommodate my neurological struggles has continued to be helpful.
Old painful memories are seen in a new understanding and finally put to rest. New ways are being learned, how to do things differently to make my every day life easier. I am having more insight and understanding of others and seeing how my own autism has worked and is still working in my life.
Self forgiveness and healing of old emotional wounds is in there too.

My goals to find and reach local undiagnosed autistic elders has failed miserably.
In our area there are few medical resources, let alone psychologists or therapists. My search for diagnosis showed me how few there were. I guess that is understandable because our area is so rural and such low population. Covid 19 set in, about the time I began my “awareness campaign”.
I began to contact local agencies, places that serve the elderly, the mentally ill, the homeless, the needy, medical/psychological groups, the local newspaper, substance abuse recovery, shelters for homeless or abused folks… I do not do well on the phone, so I generated an “autistic elders” email and began emailing these groups. I probably sent out 50 carefully worded emails. I got not even one response.

I wondered if there was anybody in these offices to sort emails. My email name might have backfired and never been opened due to the name and people’s thinking I was spamming to ask for donations. I hope to contact radio and tv stations next.

I was able to present a “webinar” through the local college which drew only 3 interested new people but at least as many supporting me through friendship. It was not recorded or saved for the internet. I am learning what works. I may take out classified ads in the local paper or on the radio. I have very few funds available for advertising, being a retired person with no income.

I am steadily gaining followers here, which is very gratifying since I am not attempting to self promote. So glad you found me and are here with me! I am grateful for all your messages of support and your interest, and hope you will share when possible, and hope that insights I have written have helped. If you have read some of the blog, you know nothing I have said is in copyright and that I want you to share freely anything I have said that helps!
Just don’t use my words as your own, OK?
Knowing each of us is different in so many ways, I do realize there will be “if’s, ands, and Yeah-buts” regarding any suggestions or thoughts I post here. I find that interesting too!

I have no idea what the future will bring. It is difficult to figure out what one person can do to make a difference for others. “think globally, act locally” was something I took to heart.
I can not change the world, but I can keep trying to find others in my own area and offer insights and suggestions to help the unsuspecting, curious, newly diagnosed older adults right here where I live. I know what a difference finding out about my autism has made in my life. I want others to experience that too!
As always, I will keep you posted.
Thanks so very much for your interest and your support. ❤ I am truly grateful!
Sending best wishes for a better 2021. Stay safe, self care always first! ❤

Self accommodations

New ways to do old things for the Holidays

Many people today are having to adapt to new ways of celebrating old traditions due to Covid 19
restrictions. It might be a good time to think through establishing some new traditions of your own.

So many autistic people struggle with holiday gatherings and activities because of sensory overload. Many of us will try to cooperate with family agendas because of tradition, social pressure/guilt, or a thousand other reasons, even though such gatherings and activities are very hard on us. I am here to tell you that you can celebrate without all of the stressful bits by establishing new traditions of your own.

Sensory overload is especially tough in groups at parties and places like crowded malls or stores, noise levels reach preposterous heights, flashing lights and sparkly things are even more common than “ever day” experiences.

Due to Covid restrictions, these experiences may be less this year as crowd sizes and gatherings are limited, etc. Why not establish new ways while everything is changing anyways?
For me, family gatherings were always distressing and stressful. Noise and chaos of so many stimulated adults and children all in one home or at a restaurant/ etc was so overwhelming. I was anxious to the point of feeling ill and it took me years to connect the distress it caused with the physical illness I almost always had at these gatherings, even getting ill before hand.

Instead I taught myself to seek out smaller gatherings, one relative or friend at a time in my home or meeting in a quiet place for a quiet activity together. There never seems to be enough time to visit at the large gatherings anyways.
Why not send cards or make phone calls or emails/ messages to individuals who are dear to your heart and make plans to meet or interact with only a few at a time instead?
Or stay home and wish everybody the best from afar?

Its OK to put your health and sanity first, no excuses needed; say “I’m sorry I can’t make it this year” and wish them well.
I learned to tell them simply that I had other plans this year, no excuses about my sensory overload, my sense of upset and failure about it all, etc..
My life became more bearable when I learned this coping skill.

Its OK to say no. Its OK to visit with individuals or not to, its OK to change plans even if there are established “tradition”. It is OK to do what it takes to make your days Merry and Bright… instead nightmares of struggles using coping skills and failing.
I am here to give you permission to allow yourself a life of fewer struggles, less frustration, less sensory overload and better days. There are so many alternatives to the things that cause such intense struggles for you.

Shop online, use the mail to send gifts or cards, use the phone or email, you can show your love and still give yourself the gift on health and well being.

Covid restrictions may make this even easier for those of us who are worried about “bucking the system” of “established traditions”. Blame Covid if you need to, you can do this!

What happened to all the autistic children?

They grew up to be adults!


Awareness is rising about autism and most people have heard of autism. Autism is primarily thought of as a children’s issue in the eye of the general public. What happens when these kids grow up? What happened to all the children who grew up before autism was commonly diagnosed in kids? They are now autistic adults!
If the CDC is right, there are well over 4 million autistic adults in the United States alone, and most of us have never suspected we are autistic.

How do we find autistic adults today?

Autistic people are more likely to be suicidal.

Autistic people are more likely to be victims of crime.


Autistic people have a higher rate of depression and anxiety.

Autistic people account for about 10 percent of admissions for treatment in rehab centers for alcohol and drugs ( compared to 1 percent of the general population admitted) This is truly stunning when you understand that autism is believed to affect 2.2 percent of the general population.

Autism may account for up to 10 percent or more of the homeless population.

Autism may be involved in those admitted to jails and prisons although very little or no research has been done specifically on autism. Intellectual disability in general has been studied as a factor in prison populations and shown to be present in higher than normal levels among the general population.

Autistic people tend to have poorer health and to die younger. Life expectancy in some studies is as low as 38 years. Other studies say around 58.

From these statements one can see how knowledge of autism would be particularly useful to certain groups. Doctors and health care workers of all types, law enforcement professionals, social workers, can you name others?

Diagnosis of autism as an adult can change lives. Self understanding is one of the keys to finding a new life amid common social struggles. Autistic people seem to have more than our share from a statistical reporting level at the very least. I can not tell you the huge difference my understanding of my own late diagnosis has made in my mundane and every day life. I can only imagine how useful such self knowledge can be to those struggling with such difficult issues in their lives, and how useful it would be to know and understand about how autism may have been involved in so many lives of pain and hardship.
I am reading of mandatory screening for autism in new hospital admissions for suicidal behaviors. I am reading of mandatory screening in clinical situations for care of those struggling with addictions.
I am grateful that professionals in some places are using today’s understanding of autism to help recognize and diagnose autistic adults. So much more needs to be done. Please help spread the word.

Autism Anger

Shhhhhhh don’t talk about that!!!!!

Autism has a few “sore spots” that seem to be avoided as topics for discussion in the forums I participate in. When somebody does open up, there is a flood of responses, seemingly relief in finding that individuals are not alone in their struggles. I am talking about emotional regulation struggles this time.
Autism and anger, autism and emotional breakdowns due to anxiety, fears, frustration, and inability to cope displayed as meltdowns, shutdowns, violence, tantrums, and outbursts.
We all understand this happens frequently to many of us. But we are ashamed or afraid to talk about it.

Autism is all about our neurology. Many of the ways we experience the world are not the same for us as “neurotypical” or average, “normal” or non-autistic people. Struggles with emotional regulation are definitely not limited to autistic people, we see examples everywhere of people behaving with one or another form of problems with emotional regulation.

Emotions and responses to those emotions are things we generally learn about when we are very small (people in general).
We are taught to recognize our emotions and how to deal with them in socially acceptable ways, usually before we leave home for school days.
Learning to recognize emotions can be helped by explanations given through instruction person to person, videos, books, and role playing, role modeling and other ways.
Learning to recognize emotions and learning ways to express those emotions in healthy and socially acceptable ways takes practice. The good news is that for the most part, these are skills that can benefit from a coach or teacher, a therapist or a counselor.

Sorting and learning to recognize one’s emotions and how to deal with them in healthy ways is part of the sensory system ( remember I said emotions had a neurological basis?) called interoception.

Interoception used to be considered part of the proprioceptive group of neurology but more recently has been removed to its own special category.

Interoception has to do with what you feel physically inside you. It is the sense which tells you what you are feeling when your body gives you physical clues to your needs and wants. That empty feeling in your middle is telling you that you need to eat. The pressure you feel in your lower regions means you need to use the bathroom. The tenseness of your muscles in your stomach and legs can mean that you are afraid and ready to run. The tenseness of your muscles in your neck, your clenched jaw, your tight fists may mean you are getting ready to fight.

Autism often interferes with our ability to recognize the first physical signs of our emotions… so we end up surprised at our own emotional outbursts and our extreme reactions to emotions we did not recognize we were feeling until they reached crisis proportions. The body experiences emotions in a physical way and we can learn to recognize the signs.

Many of us have not been aware of or have not learned to notice the physical signs of emotion. Elevated heartbeat? Heavy breathing? Weak pulse, feeling faint, tight muscles in any part or parts of the body? Feeling sick to one’s stomach, clenched fists, gritting teeth or tight muscles in lips, jaws? Smiling, grimacing, frowning, head lowered or thrown back? What we are feeling physically and doing with our bodies is a huge clue to how we are feeling emotionally. Many autistic people might not recognize body language in others, and many might not recognize our own body’s signs as well. We can learn!

In the forum discussions I have participated in and observed, many autistic adults have remembered that as children they decided emotions were not useful and made deliberate choices to disregard them or to hide them. This seems generally to have been “early on” in the nursery or as a very small child. We can learn to recognize and make use of our emotions, but it does not come naturally to may of us. It is one more thing we might need help with to sort it out. Especially this might be true in older people who are set in their ways and less likely to realize or recognize alternatives.

It is never too late to learn about interoception and how to recognize our building needs and emotions before we reach the bursting point.

Occupational therapists might be able to help, and there are many anger management classes, biofeedback specialists and therapists who specialize in behavioral difficulties. There is much printed and online regarding how to recognize emotions early inside us and how to use that “early warning system” when we recognize it in order to work with our emotions in healthy ways instead of finding ourselves in a huge and surprising/ distressing/ destructive/embarrassing/ blow up situation.

If you struggle with overwhelming emotions of any sort, I want to encourage you that this can be changed, and new ways can be learned to recognize our emotions, to direct and control them into healthier behavior in distressing situations. We can learn to recognize and use our interoception skills as an ‘early warning system’ to detect and divert our physical reactions to emotional situations and make better choices in how to express ourselves or to deal with those emotions before we are overwhelmed and helpless in still another emotional blowout.

If this is an area of distress for you, please be encouraged, it is something that can be helped.
We can learn new ways, sometimes we need to reach out to others who can help us sort it all out.
Don’t be embarrassed or ashamed to take action. Those folks are there because they want to help and they want us to live better lives. There is no shame in asking to learn new skills. And the benefits are beyond measure in terms of the quality of your life and your relationships to others as you move forward.