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.


Autism Self Love

Autistic negative feedback” baggage” and learning to love ourselves.

Self love is a very difficult concept for me.

I think it is difficult for many other elder autistic people too. The very idea that we deserve anything as an individual has been driven out of our thoughts by negative feedback for too long.

From my earliest memories I recall feedback from others about my selfishness, laziness, thoughtlessness, worthlessness, my failures and my seemingly deliberate wickedness.

Those negative statements about me and my behavior, plus early and continual childhood training as a Christian (where everything is about taking care of others, service to others, selflessness, giving and humbleness) were absorbed early and taken to heart. Having no other guidance and trying to understand the rules for living life, it is no wonder I got so much of it wrong.

In a recent online discussion and subsequent blog ( Was there Love?) wrote thoughts about how most of us in my autistic forums on line felt unloved and unlovable. This is sort of continuing the theme and enlarging on it. What do we do with all of those negative feelings about ourselves and our lack of worthiness?

I got therapy at age 30 due to suicide attempts and depression/anxiety I could no longer control by my willpower alone. The therapist probably had his worst problems in me with my self worth and my inability to stand up for myself.
I did not understand that my thoughts and opinions or preferences had any value. I had to learn that I had worth as an individual, and then I had to learn how to express my thoughts and preferences, set healthy boundaries and above all, learn to take positive actions to keep the boundaries and to take care of myself instead of sacrificing my self in response to other’s demands and desires. I had learned to appease others when I was very small, to avoid punishment and anger. I had to be taught that I was a person in my own right and that it was OK to want things, to ask for things, to have my own beliefs and ideas. Autistic rigid thinking was at work, and I had no idea that I had alternatives. It was terrifying to suddenly be responsible for my self.. I had to take responsibility for my thoughts, my behavior, my ideas, and above all to take action to enforce boundaries to declare myself a person and not a servant, slave, or accessory. ( among other roles I was expected to play )

I was not able to get past the idea that I was at all worthy of being more than a puppet for others to use as they chose.
I ended up having to look hard to find the time in my childhood when I began to learn the negative things and believe them.

I ended up seeing myself between ages of 5 and 8, and being able to find the little girl who was so afraid and who felt so unloved and unwanted. When I was able to do this, ( and remember I can not picture a thing in my mind, so I need visual aids such as photos, models, maps, or drawings to “see” things), I purchased a sad looking child-doll (not a baby!) and put her near my bed so I could see her and think about that child and how I was now able to give her what she had need and not got. I took care of her in my mind and heart. I took pleasure in giving her new clothing, imagining her being cherished, supported, fed and cared for, helped with struggles and given love. I was able to transfer those feelings first to my childhood self, who had missed it all, then to my middle school and teen years and the years of my early 20s.

Breaking though that initial barrier of feeling unworthy took a lot of time, though, and emotional homework. I cried for that little girls a couple of times, but not for long. I had been trained to believe my feelings were not worthy of being recognized and taught to hide them deep within myself. That was yet another skill to learn, to identify my own emotions and to recognize them properly, and to learn to respond to them properly.

Autistic people have many struggles identifying emotions and sorting them out as it is,
our proprioception/ interoception neurological issues being common to most of us.

I was taught to deny my emotions or to redirect them until my whole idea of self was buried deep in what I hid, and never thought or understood that there were other ways and that other people handled these things differently.

It has taken a very long time and lots of hard work to develop new behaviors and to find new ways of thinking. I am certain that many of us, especially older people who have never considered they might be autistic, grew up with similar training… and with similar results.

Years and years of negative feedback from family, neighbors, schoolmates, co workers, spouse and other contacts in our experience have led to our deep self hatred. How could we get things so wrong? How could we fail over and over to perform as expected? How could we mess things up so badly. It was our fault! We were useless, stupid, worthless. Years of negative feedback is a lot to overcome.

When I learned about my autism, suddenly things began to make sense. No wonder I could not do what they wanted me to! I have neurological struggles which they do not have! They expected me to behave as they do never knowing, any more than I did, that I simply was give a different “tool box” from which to do what they expected of me. So amazing!
No wonder I failed! No wonder I could not work to expectations ! No wonder everything was so hard!

Diagnosis changed everything for me, even though the therapy 38 years ago helped me survive and do better in the world, it was not then that I discovered how much my autistic struggles contributed to the difficulty and distress in so many parts of my life.

Here is my message.

You are worthy of respect. You are worthy of caring, you are worthy of love and friendship.


You are an amazing survivor of so many things that were so hard to understand and so difficult to live through, never knowing about autism and about how it has worked in your life to cause so many struggles that others simply do not have.

There are so many new ways to live and to care for yourself, to assure your needs are met and to give your life a richness and fullness you might never have thought you could have.
Please take the time to explore the options, to feed the needs inside of you for so many things you have been missing all these years. Take time to find self care, self comfort, self accommodation, self interest!

If you struggle with self care, I suggest that you think about a stranger you might come across, who has had a very hard life and is full of hurt and feeling un-cared for and misunderstood.
How would you help that person?
Would you punish, shame and chastise them?
Would you be constantly angry at them when they struggled to do things that were difficult for them?
No, I doubt you would.
Instead you might try to help and encourage them, wouldn’t you?

I hope you can look at the lost stranger inside yourself and be at least as good to them as you would be to any other person .




Adult Autistic reaching out

Self Advocacy, Ageing on the Spectrum


Advocate as noun: Person who publicly supports or recommends, or stands up for ( an idea, a person, group of people, certain ideas or beliefs)

Advocate as a verb: To publicly recommend, or support, promote, advise in favor of, stand up for or endorse ( an idea, a person, a group of people, certain ideas or beliefs)

Standing up for oneself , actively representing one’s own interests, welfare, health, well being,

Speaking for oneself of one’s needs, one’s beliefs, one’s best interests is Self Advocacy.

At my age, 6 months away from age 69 years old, I have finally become a self advocate.
Self advocacy has been one of my hardest struggles in life.
I had nobody to recognize my autistic struggles, nobody interested in helping me through my struggles as a child, nobody to speak for me in any situations I found overwhelming, frightening, distressing, or difficult in any of the very many ways I struggled.
I had been trained to be compliant in everything. Wait for directions, wait for permission, wait for somebody to notice my needs or wants.
Don’t bother people, don’t ask for things, don’t be a pain! Don’t talk to me, don’t tell me, don’t say that, I don’t want to hear that from you.

So many of us who grew up this way are simply not prepared to stand up for ourselves and ask for help with our problems.

One of the issues that comes up repeatedly on the adult autism online forums I participate in is how to overcome obstacles in our lives, from speaking out about being abused and asking for help to get safely to a new situation, about stopping bullying, about being blamed, shamed, or victimized in various interactions, including medical situations and needing adjustments or explanations made in health care situations.


One of the many problems repeated over and over are problems with misdiagnosis when people turn to professionals for help in understanding their struggles.
So many of us who seek diagnosis are handed misdiagnosis and scoffed at by those in power for thinking we might be autistic, usually then being told that we don’t fit diagnostic criteria from ages ago, with no current understanding of autism facts that have been learned in the intervening years since the days of the Doctor’s/ professional’s medical training.
One of the struggles we have in obtaining diagnosis is the sheer lack of numbers of autistic people applying for diagnosis.
If a doctor has 2 percent or less of his practice involved in the population they(he/she) sees, how much time will be spent trying to stay abreast of the most recent research and information for those issues? I base the 2 percent of population quote on the current basis of understanding of the frequency of autism in the overall population. Most of the people seeking diagnosis will be better informed than their consulting specialists unless the person we are seeing is an autism specialist.

In so many of our struggles, we know what is best for us, what works for us, what is wrong for us, yet we are somehow afraid to speak up and speak out.
I was afraid of aggression and anger from others, afraid to draw attention to myself, afraid to speak up about things that were wrong or distressing to me. I was convinced nobody cared. I was right.

Nobody does care about you like you do! Unless you speak out on your own behalf, nobody is likely to understand what it is that is troubling you, whether domestic abuse, workplace bullying, medical issues regarding your care, medications, treatment, clarifying instructions you get or attempting to get professional diagnosis.

I have several things that do not work in my favor. I have no social status, I am elderly, I am not physically appealing/attractive, I am a woman, and I am not wealthy.
I do have the advantage of previous training for diagnostic battles. Our now adult daughter struggled from an early age with many things that made life painful and dangerous for her. I got my experience on the medical battlefield when she was young, as an advocate for her diagnosis and treatment, being forced to learn all the ins and outs of insurance, government requirements and definitions of disability, researching diagnoses, finding the right treatments, understanding therapies and medications, etc etc etc.
Mother love was a great force in helping me overcome my own struggles and in learning to speak out for things that were not right for her.

Have you given thought to self love?
Our daughter was worth of fighting for, of seeking treatment for, of my learning about her struggles, learning the required rules and regulations from the government at state and national levels and diagnoses involved, how to apply for help, where to go, who to see, and my learning about medications and help that might be available. I was highly motivated.
Our daughter was/is worthy of continuing to fight for when she had given up. When she was discouraged, when she was overwhelmed, when she was in her darkest times. There has been no question of that!
Would you fight for somebody you cared about?
I think almost all of us would.
Then consider being a self advocate and standing up for yourself when you need to.
I did not think I was worthy. I still don’t want a fuss.

I still am afraid to bother anybody, still am worried about what others will say or do if I speak up. I am timid, I don’t want to annoy or anger or be the focus of negative attention that one draws if one opposes authority in the form of the doctor, the teacher, the boss, the spouse, the family… there is a huge list of people it feels unsafe to speak up to about any subject. My social conditioning is that deep it is a struggle every day to remember it is OK to ask for support, for help, for explanations, for adjustments, for changes, for things I need.

I am also learning that my life can be so much better if I ask for accommodations, if I ask questions about directions, diagnoses, treatments recommended, or even protest or contest certain proposed actions supposedly to be done on my behalf.
I am worthy of self care, I am worthy of respect, I am worthy of being heard, I am worthy of making decisions of what is right for me and speaking up on my own behalf. I had to learn this and fight to overcome my deepest beliefs about myself and my own value.

If the “professionals” you are interacting with dismiss your fears, pooh-pooh your questions, patronize you, demean you, treat you with contempt, or ignore your concerns, please report their attitudes and actions to their superiors and try to find others who will respect you and make you a partner in your own care and other interests.
You are worthy.


I am learning how to be an advocate for older adult autistic people and to educate and to encourage and to speak up whenever I have the opportunity.

First I had to learn how to love myself enough to feel worthy to speak up for myself.

More on self love soon.



Autism Emergencies

The importance of being prepared.

I can’t say this is about autism specifically, but being autistic and elderly has made interactions with others harder for me than it might be for some people.

In mid March 2020 my husband had a health emergency which took us to the hospital Emergency Room.

In our state of the USA, Covid 19 precautions had just been enacted.

We were screened for that from an isolated hallway, as well as having to give a summary of what my husband’s problems were. We provided proof of insurance and established that I was his spouse, his representative, and his power of attorney for health and everything else.

I was allowed to wait with my husband while he was seen and tested by many different medical people, until he was finally admitted for emergency life saving surgery.
I was allowed to stay while the operation took place and after, I saw him in recovery, and followed him to his room and saw him comfortable. I saw him again early the following morning. At that point rules had changed for Covid Isolation in Hospitals. I got a call saying I could not return to the hospital to be with him.
I was not allowed to see my husband again until he recovered enough for me to pick him up and bring him home. ( I stayed outside of the hospital, in my vehicle, he was brought to my car in a wheelchair).
We were lucky because he came home alive and continues to be well.

Things like this can happen to anybody and at any time!
Some time ago, we had made each other Power of Attorney and Health Care Power of attorney, filled out a living will making each other designated decision maker/ representative if health care decisions were needed and the individual as a patient could not respond for any reason.
We made our wills at the same time.

Today I see we made good decisions to have these issues settled while we were in decent health, decent mental condition, and not in crisis.
We could discuss everything regarding our health issues, willingness to accept life support, choices surrounding “do not resuscitate” orders, etc. We could decide who we wanted to include in our will, how we wanted our “worldly goods” distributed, make special mention of the family special items and who they should go to, etc.

If you are alone and do not have family or spouse or others to speak for you, it is most important that you have these papers showing intent and giving the persons you trust the power to help you through health struggles if you ever need it. Alternatives would be next of kin, no matter how far removed, or to have court appointed guardians or your individual health care providers making decisions regarding your situation on their own. Didn’t want to spend the next 10 years on life support in a coma? Without directives and representatives, you might not get your way.

If you want to assure your best interests, it is important for you to make those choices and decisions for yourself or have available somebody who you trust , and who knows what you want, to help you.

When I was my mother’s caretaker/ representative and we had to travel, I carried copies of all the papers we needed, as listed above, plus her medicare/medicaid/insurance papers and copies of her social security card, a list of her medicines, her meds for the day, a change of clean clothing and other needs all in a backpack that I could put over her wheelchair handles.
When I had to meet the ambulance at the hospital to have her admitted for frequent health crises, I had everything I needed to assure she got the help she needed and was her spokesperson and caretaker while she was in hospital ( Parkinsons’ dementia, autism, etc made it necessary for somebody to be attendant with her at all times.

The point of these illustrations is that we don’t know what the future might bring, but we can make any crisis we experience easier to deal with by preparing ahead. Please consider how you want to be helped, who you want to help you, and what you will and will not want “done to you” in any health crisis. You will have peace of mind and you and your Representative/Power of Attorney will not have to wonder if they did the right thing. You are more likely to get the care you need if you speak up about things that are important to you while you are not in the middle of a crisis.

Just another set of tools you can use.

Autism enrichment

learning enhancement

stimulation for growth or comfort, adding wealth of experience

creating new opportunities for self expression, growing skills,

finding new ways to connect with our world.

When I was a very young child I spent my time in a ‘chair table’ seat which

kept me confined for much of the day. From the time I could sit up until I could walk with the aid of my parents holding my hands, I rarely left that table. My mother was autistic and I was her first child. She was terrified of germs since they brought me home as a preemie of 4 lbs with strict instructions to wear masks and sterilize everything!!!! I can remember spending time in that chair clearly. She would give me things such as measuring cups, spoons, some plastic toy or bits of food whenever I would get restive or call to her. She spent a good bit of time out of sight in another room but I could hear her, and often she had the radio on. The sounds fascinated me.
It got to the point that I was bored and restricted in that chair and began to fight being put into it.
A few whacks on my bottom got compliance at first, but soon after I began to fight in earnest. She finally understood that she needed to do something else with me. I was allowed to roam on the carpet or spent time in my crib with playthings.. when I was ‘free’ I was hit on the hands or the backside if I touched something I was not supposed to. I never understood why I was getting hit, It would come out of the blue and I never associated the punishment with the transgression. (that is another story).
A few times when at the grocery store my mother selected little “wonder books” from a rack and brought them home. She was a very poor reader, but I do remember her reading those books to me and my sister … the presence of my sister means I must have been at least 2 years old. How I loved the books! I was hungry for more books and as soon as I could talk I asked to be read to and asked for books when I spotted them in the stores. By 4 I was reading way above my age level, my first adult book was “Robinson Crusoe” which I found at the back of my grandmother’s closet on a visit to her along with a treasure trove of Will James, Sanford Tousey, and other books for older kids and adults. It is hard to describe the joy that brought! I started kindergarten as a reader but although we were taught words to read on the blackboard (boring, I already knew them) I was not allowed access to library books of the classroom in first and second grade. Instead while all of the other kids were reading, I was expected to work on my very poor penmanship and learning to print in first grade, then to write cursive in 3rd grade.
It caused me such pain to be punished like that. I felt only discouragement, the idea that I could write well enough to be allowed to read was never grasped. It caused me such despair that I struggled so with writing. I would never get to that bookshelf. ( I never did, in those classes) I was burning to get at the books!

About that time ( summer between first and second grade) my mother learned to drive and took us to the library a few times. I was so disappointed that I was only allowed to take out 2 books at a time. Sister could take out 2 books too, so that gave me 4 new books to look at. Soon I was pestering my mother for more trips to the library. I think she dreaded it and had very little interest in it.. it meant she had to read new and more difficult books to us (she was so dyslexic her reading was probably 2nd grade level).
Mother hated books around the house, ( somebody might ask her if she had read them, or ask her questions about them) although she usually had a woman’s magazine for the new recipe and craft ideas/ decorating ideas they contained. She hid my father’s favorite books in the back of the closet and refused to let him leave them around the house.
I read those magazines, and when I discovered my father’s books in the closet around age 10 I devoured every one of them. “How to make friends and influence people”, “Shepherd of the hills”, “Sgt York and his people”, ” How to build your dream home for under $5000.”… What if I had volumes of appropriate reading material instead?

I often wonder what might have happened if I had free choice and help in choosing special interest books and free- will selection of books at that age? I did not get that until I was allowed to walk to the library by myself at around age 12. I had to walk to school and the library was on the route. I came home with armloads of books several times a week.

What if I had been given more input and stimulation during the early years in that chair and in my first explorations as a barely-toddler. What if? ????

Fast forward to today’s children, especially those confined in any of many ways and in care (as are all infants and small children). Are children getting enough input from other sources besides tv and videos and continual exposure to electronic games ?
Are they having adventures in new places, seeing ,touching, feeling, observing, hearing,tasting new things every day?
At that very young age I was a sponge for knowledge, absorbing everything I could. Instead of being exposed to every possible stimulus and source of input, I was confined for the convenience of the adults in the house, shut away for the comfort of the adults, restrained and made to refrain from learning new things by the adults in control at home and at school.
Parents and caretakers may not be aware of the huge thirst for information and the inextinguishable curiosity that goes with many autistic children (and NT children too!)
Imagine nurseries, daycare, schools, institutions for care taking for both young and old people.

I worked in a child care institution before I retired ( most of the kids were autistic) and my mother was confined to a nursing home for the last 6 years of her life. I saw for myself the poverty of input on those “care” levels. Except for one ‘planned craft’ a day, it was videos, tv, music… and not much else, all day every day, even those in very limited amounts. (the kids had school and counselors daily as well).
I have seen the minimal interest in giving input and creative/ self expressive outlets to the residents there. “it just makes a mess” “what is the point?, it is a pain”.
What a desolate and vacant environment! Overworked, underpaid for the most part, struggling with their own lives, caretakers, parents, daycare workers and some teachers may be far less enthusiastic than the would-be participants.
I urge those who might have autistic persons in your charge to consider how lives could be enriched at every stage of living.