Overload, Burnout, Stress and Distress

Its OK



I have gone into a mini depression lately. Not sure if it is the change of seasons, the culmination of my frantic search for information and the feeling of the need to reach others about adult autism and how diagnosis can be of so much value and usefulness even in old age.
Maybe everything in this world combined at the moment is overwhelming me, what with Covid, politics, etc etc.
I want to hide. I want to escape, I want to find peace.

I have learned that its OK…. to put self care ahead of everything else.

I am spending lots of time sleeping, reading, cuddling with my fuzzy blankets in my favorite spots.
I have given up going onto forums and web pages discussing so much pain, angst, hurt and anger.
I have taken up indoor gardening and am involving myself in growing things.
I am walking again on the lake shores and in the woods and glorying in the peace and being completely alone.

I am not keeping to my strictly healthy diet lately and feel both guilt and relief, probably in equal doses, knowing that what I snack on directly affects my health. That is OK too and I will resolve that problem in the future, just not today, and maybe not tomorrow.

It is OK to shut the door on the world for as long as you need or want to.
It is OK to spend time alone.
It is OK to shut off the media, to avoid the internet, to give yourself time and room to process the things that are causing such difficulty and pain in your life.

It is OK to reach out for help if you find yourself stuck and overwhelmed and unable to meet responsibilities.
Make sure those you are responsible for are safe (children, pets, property, jobs, etc) ( of course you will) and ask for help if you can’t do this alone.

It is OK to be human, to have needs and to have struggles.
Being autistic predisposes us to struggles, and sometimes we need more time and “space” to sort our lives and figure out new ways to deal with the things that are hardest for us.

Deal with, cope, negotiate, approach, contend, are all descriptions of conflict and struggle.

It is OK to have struggles, to need time to find ways to make life work its best for you.

You are important and you are worthy of peace, safety, rest. and self care. Don’t let others tell you what you need, don’t let others tell you “you should” do anything or that you “ought to be able to handle” things when you are overwhelmed.

Seek help to find ways of getting your needs met, doing things in better ways, finding paths that aren’t as painful, solving your problems creatively and finding self compassion along the way. You are worthy. It is OK to have needs, to need help, to have problems so overwhelming you can’t contend with them alone.

If you are struggling and in emotional pain, please reach out and ask for help.

Was there LOVE????

Something is missing from the lives of autistic children.

If the insights I am gaining from adult reports of their childhood are any indication.

Growing up I truly believed my family hated me and could not wait to get rid of me,
did not want to hear from me, was not interested in anything I had to say, how I felt,
what I thought. I believed they looked for reasons to try to hurt me, to shame me, to humiliate me, to cause me emotional pain and to punish me. I learned to be wary, defensive, self protective, afraid and anxious.

I still remember vividly almost every incident in which I was treated this way . To be fair, my perceptions might have been skewed due to my very poor visual and audio processing, which did not allow me to experience anything in “real time”. I was not equipped to understand a thing I saw or heard (human interactions face to face or in any person to person settings such as family interactions, school classrooms and free time association with others, watching tv, movies, or today watching you tube or other online visual and audio presentations). Nobody knew or understood about autism back then. I do understand (now) how it happened.

I remember family sometimes said they loved me, but in day to day experiences it was very difficult to believe. I remember my sister asking me if I believed I was loved, and I replied that I believed my mother when she said she loved us. That’s what she said, one did not doubt mother!
But I never felt loved. I never understood the concept of love. Nobody ever explained it. I could not see it, so I could not feel it. Looking back, I can see signs ( now ) of concern and caring, but at the time of my family and youth experiences growing up, I did not see or understand. Nothing in my childhood was ever explained. I was simply ‘told’ and had to accept whatever i was told, and accept it immediately, whether it was good or bad.

I rely on my autistic brothers and sisters on several forums to give me insight and understanding of how my autistic life experiences compare with others’.
I rely on insights they provide to make adaptations or adjustments in the way I see my world. They explain much that has remained hidden to me all these years. I asked on a couple of the larger forums (over a thousand members in each) this question.

“When you were growing up , did you feel loved?”

Hundreds of answers poured in over a period of days. If the answers I got were any insight, the majority (approximately 19 out of 20) reported that they did not feel loved. I was not alone!
I had suspected as much due to the large number of posts with memories of difficult struggles and cruelty reported of childhoods past.
In other conversations, Autistic parents swear they will not intentionally make their child feel unloved, uncared for, ignored, or cast aside, isolated or as though they were being discarded.
I believe it is human nature for parents to want life to be better for their children than the childhood they experienced. (but I don’t know many people who had happy childhoods).

I then asked a follow up question and asked the people who gave me insights to answer another question. “if you grew up unloved, what could have changed to make you feel loved?” and
” If you grew up feeling loved, what do you think made you believe you were loved”?

Overwhelmingly, the answers to this question were so moving. First of all, many of us needed to feel safe. Many of us remembered frequent emotional or physical punishments, criticisms, pointing out of weaknesses and scoldings, never feeling free to be themselves, feeling the anger, disgust, contempt and revulsion of their family members and just waiting for the next round of attacks on their bodes and or their psychological/emotional existence.

Most said they wished they had been listened to, encouraged, had explanations or discussions about so many aspects of life, had been approved of, had been included in family activities, had been at least sometimes the focus of loving and kind attention, instead of being ignored, criticized, cast aside or isolated.
One point brought up over and over, was being kept from family outings, family events, family activities that other siblings were included in.
I remember being sent to my grandparents, who did make me feel loved and worthy and who encouraged me, engaged me, and were kind to me.
I was in about 4th grade when I finally realized that the weekends I spent at my grandparents were weekends that family outings without me happened. I got full reports from the sister next younger, about where they went and what fun it all was. When I protested, and asked whi I could not have gone too, I was told “you had your special time with grandma and grandpa”.

The weekends when my siblings went to visit grandma and grandpa, the rest of us stayed home.

Many others had similar memories. Not welcome in my own family circle to do the fun things they did. What message does that send?


I think I really did not understood about all the facets of love and all its implications or the ways it is shown. I know I tried to make my own children loved, and as young adults, they report I succeeded in that. Somehow that is so precious to me. Of all the things I longed for as a child, to feel I was loved was at the top of the list. I never felt I succeeded with my parents or my siblings. Love may have been present but I did not experience it. I did not believe it. How much of my experience and its interpretation was the truth, and how much was my processing struggles and my autism keeping me from understanding???

I have struggled, as many autistic folks do, to sort my emotions and understand them.

Not until my learning about my own autism, and examining my previous experiences through the understanding of how autism has affected everything in my life did I have more than crumbs of understanding taken from clues in my early life, and most of it I “got wrong” or was incompletely informed. It is a lot to digest, it is a lot to understand. I am still working on sorting it out.

I hope that autistic children today are getting explanations about everything, the nature of things that are not black and white cut and dried in life, things like emotions- love, hate, how they can happen in a relationship at the same time and what it means. How emotions work, how to recognize them, how to understand other peoples’ emotions and what to do about it all.

Parents of autistic children, please keep explaining everything… what, how, why, when…. it is so important your child’s understanding of the world, their place in it, and to their sense of self and their perception of life as it unfolds around them. Don’t assume they understand what seems evident to you. I am fully intelligent, and I can learn, but sometimes I need to have the nature of things explained. In the case of those with auditory and or visual processing struggles, a lot that is evident to neurotypical people can be missed or misinterpreted.

Take time, explain everything. Your children will thank you some day.

Autism hazards

How being autistic might predispose us to behavioral hazards.

I have spent quite a while trying to learn more about autism’s association with some of society’s most difficult struggles.

Exact numbers are difficult to gather, and the numbers give here have been extrapolated by averaging results of studies I examined.

There is much to be learned and decided, but there have been studies on autism and social struggles such as homelessness, substance abuse, eating disorders, suicide, crime rates, jail and prison time.

Here are some of the statistics I found, averaged by combining results, some were significantly higher or lower than the averages I quote here from each group of studies I looked at. I used studies done since 2015, and there was actually very little research done before this on the subject of autistic involvement in each of these social issues.

Autistic people are 7x more likely to struggle with substance abuse.

up to 12 percent of homeless people show features of autism in one recent study. T

here is still lack of much research being done in this area.

One survey of adults admitted for rehab in clinics across the country said up to 30 percent of the people admitted were autistic.

Up to 23 percent of admissions ( in a similar nationwide clinic survey ) for treatment of eating disorders were autistic.

Autistic people are 9x more likely to die by suicide, and studies report up to 60 percent have had suicidal thoughts or attempts.

Up to 40 percent of autistic people report strong symptoms of depression.

27 to 42 percent report struggles with anxiety

Most studies I looked at regarding crime and incarceration were based on general intellectual disabilities rather than on autism, so I will not comment on that, but I know there are new studies being done regarding those statistics and autism.

One thing I have observed is that today people being admitted for treatment for most of these struggles are often being screened for autism. This is not universal yet, but it is a trend which is being reported as recently as 2018 and continuing through today. I find that encouraging.

None of these numbers are scientific from the point of my collecting information and extracting information and averaging it.
I am not a scientist. I am a concerned old lady bystander hoping to bring information to light so that it can be used for better understanding of adult autism, better self understanding, and perhaps better lives through self knowledge and application of coping and survival skills or seeking help if one struggles with one or more of these issues.

You are not alone! there is help available. Please reach out and ask for help if you are struggling.

Crisis lines and local hospitals usually have lists of supports available in your area. Your doctor or social worker can also help you find what you need. Tell others in online autistic communities and ask how others have dealt with these issues. Reach out to family or a friend.
Just know you are not alone, and it is OK to admit you have struggles.
A better life is out there but you have to take that first step. I hope and pray that you do.

After diagnosis

What next?




What happens when older adults are diagnosed with autism? Are there supports or therapies

which can explain this surprising diagnosis and help us understand our new autistic selves?

How will life be different? What do we need to help ourselves transition to this new definition

of ourselves?

Recent discussions in some forums I check out each morning have given some great insights

and not all of them are good.


On the question asking how knowing our autistic diagnosis has helped us, the great majority responded by saying it has not!

I must say this surprised me, considering how much better I feel I am doing now I know myself better and now I better understand my struggles.
For the majority giving answers, simply understanding how one struggles and why has not been enough. Those struggles still exist, even though they have been given a name (autism).

Most respondents said they needed more help. The great majority wished for available therapy to help them adjust to the new information and understand how to cope with the changes this brings.

Many said they could not break down the information of knowing their struggles to understand how to make adjustments and accommodations for themselves; they sought insights but struggled to find those new coping mechanisms on their own.

Many thought they could use another person to help in day- to-day functioning, actions requiring “executive functioning” struggles were the ones mostly named: household tasks such as cleaning and laundry, self care including bathing and other hygiene issues, food preparation and shopping, bill payments and financial struggles were all mentioned.

Finding affordable housing, and transportation issues were also discussed, as well as seeking persons to advocate for them in many transactions, medical, legal, etc. and for helping with filling forms, making applications, finding the services needed. Many services may be available, but finding out about them and applying for them seems insurmountable in difficulty. Even learning of local connections who might help is difficult at best.

Many wanted training in job skills, specialized education, and help finding jobs, perhaps getting accommodations for some sensory or other issues they were dealing with.

Some of these services can be provided through the state level insurance mandates in the United States that now say adult diagnosis and therapies/treatments must be covered (medicare too).
Others may be accessible without the word “autism” ever being raised. Locations where individual help is available vary considerably from place to place, so there is no general outline to tell us which steps to take to get what sort of help.
Getting ourselves connected to the networks used by other groups is complicated and for those who struggle with social issues, can be overwhelming/terrifying.

The forums I attend are international. In other countries there may be nothing at all to address autism . In some there may be agencies where one applies first. Here in the USA we ( autistic elders) are lost and on our own for the most part. Raising awareness is the first step.



Autism Statistics

Not good news


I began to gather statistics regarding autism a while ago. Sources and quotes seemed to vary widely but soon I realized that until quite recently there have only been a few studies regarding autistic struggles, and that most of the statistics quoted before 2015 or so were more likely to be using old information and only pertaining to young people or children. Statistics quoted here are still canted toward younger populations. Many autistic adults never reach the age of 60.

I have multiple sources for all the statistics quoted here, and when there have been drastic differences in the numbers reported, I have attempted to understand why and attempted to figure out which was most correct.

I have attempted to find actual studies instead of just quoting somebody else’s quotes from a lecture, blog, presentation, book, or article in print.
I believe that due to the hidden factor of the lost generation of older adults without diagnosis, the statistics are still probably skewed.

As our understanding of autism grows, so will the precision behind collected statistics.

Consider this at best, an “educated guess” using information available on the internet and in multiple recent reference books.
Reports and study results are accruing, these numbers are definitely not static.

Considering that these statistics are probably under reported, they are staggering in the implications. Something to think about. What can we do to lessen the impact of autism on those who must live with it?

It is perhaps easy for those of us ( autistic folk) who live independent lives close to the mainstream, who speak and write easily, who have a support system and access to accommodations to say , ” I do not have a disability, I simply have a different operating system”. Lucky us! We are in the very small minority of autistic folk so “gifted”.

These statistics give the lie to those who trumpet autism as a gift and who would become angry over people who search to find ways to alleviate the suffering and dangers that their dis-similarly
“gifted” autistic brothers and sisters deal with every day.

Consider these statistics:

Autism as it is understood today will affect between one and two people out of a hundred. –

35 percent of those with autism will have intellectual impairment

40 percent of those with autism have epilepsy or other forms of seizures

The average age of death for an autistic person without intellectual impairment is 54 years. Leading cause of death is heart disease, followed by suicide and seizures.
Suicide risk is 9 times that of the neuro-typical population, and risk of suicide is higher among women.

The average age of death of those with intellectual impairment is 39.5 years .

Factors in these terrible statistics seem to be worse overall health and likely complications of co- morbid health issues, poorer health care and poor self reporting of health issues due to impaired communication abilities. Higher incidence of seizures also is reported to be a contributing factor.

Children with autism are 40 times as likely as their neurotypical peers to die of injury before their 7th birthday. Most common deaths in this autistic age group are drowning, and suffocation.

Up to 40 percent of autistic people are non verbal, another 20 percent struggle with speech. This means + /- 60 percent of autistic folk have very strong impairments in every day ability to speak.

Add this to the wakening awareness that there is a high percentage of autistic people in jail. 30 percent of jail populations are reported to have intellectual disabilities.

( this covers all forms of intellectual disabilities, not just those who might be autistic) There is a very recent movement to try to uncover hidden autism in incarcerated populations. I applaud this work and hope to learn more as information becomes available.


I will sum this information up by saying that I believe the statistics being gathered today will be more accurate and those of tomorrow, hopefully even more so.

The reporting of statistics for the group designated “autistic” is in its infancy.

I feel it is important to our understanding of autism to see clearly how it effects us as a group.

To know these statistics, to know the impact of autism on so many individuals, is the first step to begin to take action to help in the places it is needed the most.



Assumed incompetence

patronized in a whole new way …


Now to report on something that has changed in my life experience. For several years now, with my graying hair and evident age I have been “patted on the head” metaphorically, being called “honey”, “sweetie”, “dear” and other endearments by complete strangers, usually younger women. It makes me want to bite somebody, just to show I am maybe not such a “sweetie” after all. Of course there is a world of thoughts and ideas, fantasies and speculation, and another world that often doesn’t intersect in what one would actually do. Fantasy can be a comfort some time. I have adjusted to the endearments and tend to simply ignore them. It is just proof that they don’t know me very well… right? Are they attempting to show good will and friendliness? hmmmm.

But I have noticed something new since I have discovered I am autistic. I am open about my autism and make light off and on of some of my struggles. I have this blog, which I share with the public in hope of helping others who are not yet diagnosed to find the peace of understanding themselves and others in knowing how autism affected them in youth and in their daily living. I willingly answer any questions I get from others when they learn I am autistic. One way to overcome stigma is to educate others.
On learning I am autistic, there are some folks who seem to immediately assume I am therefore incompetent to make decisions, to perform certain functions, to have any sort of judgement or understanding of things in this world which I have long been familiar with.

I am so old that my high school class just celebrated its 50th anniversary of graduation. There have been reunions before, and I have not participated.
Most of my memories of high school are of being mocked, bullied, socially isolated, and other non- successful social interactions.
I really had no desire to revisit those memories or to interact with those individuals who inflicted them.
When the announcement was made of the 50th anniversary celebration, there was also a form forwarded to fill out, asking class members to share what life has brought them in the past 50 years and to keep others informed.
I had filled out these forms before for the 10th, 25th anniversary etc. .
This time instead of the usual progress report, I asked that the link to my blog be included.
The reaction was interesting. ” Oh my what a blog, how brave of you to share your struggles, I am so proud of you.” This from somebody who I never had any interactions with at school and have no personal relationship with at all!
Then the question, not once but twice. “are you sure you want to do this?”
Implied was the idea that I would be ashamed to share this information about my autism with my former classmates, or that somehow I would damage myself or my personal image among my peers. It would be made public! Oh NO!
Yes, I assured them that I did indeed intend for my public blog to be publicly shared with all of the persons on the classmates list. I want as many people to be aware of un-diagnosed autism in the older generations as possible. I see this as an opportunity to share the benefits of diagnosis. Knowing I am autistic has been healing in a way that no other event of my life has come close to.

I am getting metaphorical and verbal ” pats on the head” and “aren’t you special” treatment now from others I am interacting with. I tend to just leave these comments alone, too, and attribute their reactions simply to attempts to be kind and to their ignorance of autism in general.

It is interesting that even though I was a social pariah in many ways before I learned I am autistic, I was not automatically treated as though I was also incompetent in general. This assumption of stupidity or lack of judgement does not sit well with me, it is a new experience and tends to make me feel crabby when it happens. So far I see it as well meaning ignorance. Perhaps that is better than the active hostility and aggression I experienced throughout most of my life.


The label of being autistic seems to have changed people’s perceptions and added an automatic layer of disdain or contempt for my ability to think. Yes, stigma!

Just shows there is need for not only autism awareness and education as to what autism actually ‘is’ in its many forms, but also need for acceptance. Hoping to open and win minds one person at a time.
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Tomorrow I will be asking my GP for a referral to another autism specialist. Anxiety building. Subject /topic for a new blog page soon.