One Year Anniversary

the first year of my life as officially diagnosed Autistic


Today, exactly one year ago I was given a diagnosis of autism by a wonderful doctor

who came out of retirement to finish the process he had begun before he retired due to ill health.

Subsequent test results compiled and explained 3 months later were so helpful in understanding my lifetime struggles and gave such great insights to my worst problems, allowing me to arrange my life to accommodate the things that were most difficult for me and to make my life easier, less stressful, and more comfortable. I will be forever grateful to the kind doctor who gave of himself amidst his own personal struggles and very serious ill health to reach out and help me at this late stage in my life.

What good does it do to have diagnosis as an adult of any age?

WE are already “out in the world”, have places in society and are in situations in life not knowing. Why does it matter now?

Diagnosis can explain why we struggled all our lives, it can give us insights into the struggles we had socially, at work, in the family, help us understand how our neurology worked against us time and time again in situations that we may not have understood or that might have been helped by knowing our limitations, our strengths, our neurological processing needs, and that above all, our pains, hardships, struggles, and limitations were not “all our fault”. We were not to blame for our inability to keep a job, to find a mate or a friend, to interact with others, to care for ourselves or others, the list goes on. So many people struggling on the edge of society might find new ways to do things and new ways of understanding if they knew they had a neurological reason or reasons for their struggles and that they are not bad, wrong, stupid, thoughtless, or many of the other labels we have been saddled with in our struggles. By using the tools of analysis, we can discover what accommodations, helpful therapies, special schooling, housing, care arrangements, etc may work best for us and help us to be productive, healthy and to find peace as we sort out how autism had its way in our painful social histories and how we can proceed with healthy understanding as we sort our pasts and move forward. I Know how much it has helped to know and understand my own autism. I deeply wish to help others struggling with self blame, self doubt, self hatred, fear, anxiety, anger, frustration, desperation and defeatedness to be able to say to themselves also. Aha, that was autism! And to use the knowledge of self diagnosis to grow and thrive instead of merely to survive.

Coping with anxiety

Autism anxiety, old age, trying something new

This is going to be more personal than a lot of my attempts to provide general information;
I am going to be teaching a little class for the “lifelong learners” group at my local community college. The title is “Discovering Adult Autism” . It will have basic information about autism’s history, what autism is and how it affects us, why undiagnosed people have needless struggles that could be helped by diagnosis, etc.
When I volunteered to teach this class I was offered live streaming or to wait until I could do the presentation in a classroom. Being old and unfamiliar with technology and being totally not visual in nature due to my autistic sensory processing issues, I asked to wait until class opened for personal participation.
I thought I would be teaching a very small group and have generated an outline, 5 pages of “handout” printed information.
I do not have the capability/access or experience, etc to produce visual format using today’s programs and graphics, etc. Very low key. Set it up as simple talk to local folks in a small classroom situation.
Just a week or so ago the ALL group leaders told me (did not give me the option) that they would be doing live streaming video. ( panic ensues)

I was not thrilled, having many self image struggles, and having avoided even photographs being taken of me for most of my lifetime.
I am adjusting to the idea that this is going to take place and have been told that the group moderator will do all of it without my being required to monitor screens, etc, which my visual and audio processing would make extremely difficult and stressful.
Instead she is supposed to tell me if the observers online have questions and to ask those questions for me to answer.
OK, I agreed to that.
Maybe I could pretend that was not going on and just give a presentation to the people present in class.
At age 68 (almost 69!) and being autistic, I am not too flexible or comfortable with new experiences… I see so many opportunities to humiliate myself. Lifetime of experience tells me this is likely to be the case in this situation too.

It is less than a week away and my program coordinator /moderator has not contacted me yet.
I only noticed that they had posted an online link to the thing for the group.
I repeat it here if anybody thinks they might be interested in watching.
Join Zoom Meeting
https://us02web.zoom.us/j/85307062424?pwd=RnQrZGRVRm9qYVF4bVE3N2xRa0J1QT09
Meeting ID: 853 0706 2424
Passcode: 863872 1PM Eastern time USA, September 30.

Evidently it will also be perpetually available on Youtube through the links of the group, ALL of Alpena.
The only thing keeping me from complete stampede and backing out is thinking about the possible audience that could be reached to explain about adult autism and how important it is to find the lost generations who missed diagnosis in their youth.
I think about how much life has improved for me with my new understanding of my own autism and how much diagnosis meant to the difference in my life from “survive” to ” thrive”.
Remembering how important diagnosis has been to my own life will give me enough determination to go through with this, in spite of my super anxiety and the desire to hide and withdraw from the potential disaster I see lurking, and which my mind is only too willing to dwell on.

Autism and Stigma

How do autistic adults experience stigma?


According to the neurologist who examined me first, autistic people are unaware that they are being bullied, stigmatized and socially isolated.
Almost all presumptions he was taught in the 1970’s and 80’s about social experience for autistic people has proved to be wrong.
Today even science recognizes that we are aware of being stigmatized due to our autism.
We feel isolated, we feel lonely, we feel it when we understand we are being avoided, patronized, mocked, bullied, selected for persecution and unwanted aggression due to our differences.

A few weeks ago I accepted a friendship request on Facebook from a man who belonged to a special interest page that I am also a member of.
I looked at his posts and decided he was safe. OK, friend request accepted. Now we can share info, see each other’s posts, and interact with each other on our personal pages.
I have many online friends and enjoy the interactions immensely. Since I do not do well in “real time” interactions due to my slow visual and audio processing issues, facebook and other internet web pages really do work as my “social life”.

Hours later, he sent me a message asking me to ” unfriend him” . It seems that he had his facebook page only for close friends and family members. (untrue, I had seen his page and some of the other friends were also members of the same special interest group). Well, I can be grateful that he didn’t just “block” and “unfriend” me, I suppose. I think he saw my link on my personal page that shows my blog address “old lady with autism”. and it scared him off.

It is unlikely that my politics or my random comments offended him, I keep my political ideas to myself and don’t randomly rant about sensitive issues, I find all of that too upsetting and I don’t like to fight or to justify myself, I have said before, I am a lover, not a fighter. I do off and on post links to diagnosis of autism in adults but it is not even 10 percent of my normal content. I have drawn others specifically, I think because of my being open about being autistic.

Thinking about this experience, and also reading about how another neurodivergent friend was harassed and bullied and mocked because of her posts on another special interest page, I thought I might do a bit of research on how autistic folk are affected by stigma.

Guess what?
There were pages and pages of rants, commiseration, sympathy, empathy, discussion and suggestions for parents, siblings, caretakers of autistic children and one which also included caretakers of adult children.
There were studies and pages of blogs, support groups, “educational pages” planted to draw business for therapy groups and institutions, etc. all about how families and parents and partners and caretakers experience stigma over the autistic individual’s differences and stuggles…….
and, ( you know what I am going to say next) not ONE page about how autistic people experience stigma, not one study, only a few blogs by autistic folk like me.

Draw your own conclusions. I have no answers, but I can see a problem here…. can you?

“you can do it if you try”

Well, no, not always.. in fact not often. I have neurological struggles which keep me from understanding expectations and from recognizing situations or intentions that are completely obvious to others. I frequently do not understand “what they want” under many circumstances.

“Your’e just not trying”. “You just don’t pay attention”, “You just don’t care”

I have heard versions of this all of my life. I suppose it is meant to be encouraging or to stir me on to even greater achievements or make me feel guilty because I have not accomplished something others believe I “should” “can” or want to do.

Here is what undiscovered or misunderstood neurological struggles may be like. Your experiences may vary.

Witness the child in school, always in trouble for “not paying attention” when what is really happening is that she has difficulty processing ( understanding) anything she sees or hears in ‘real time’ classroom lectures, presentations, videos, movies, or podcasts. She is trying as hard as she can, in fact, she is overcome and fearful that she will be chastised again and again when she once again fails to meet expectations. She has had her hearing tested: perfect, even better than normal. She has got a recent eye exam and new glasses. Now she can do better in class, there is no excuse for poor performance. She tries to fake illness to avoid class, and is punished and sent to school anyway. Class is maybe safer than staying home, she is fearful no matter where she is.
Somebody will find her and punish her for not doing things she should… she can do it if she would just try! She is sure she is a failure, does not understand how to do better, knows she angers and frustrates people no matter what she does, and oh how she wishes she could fix herself and make them pleased with her. She wishes she could be good so she could avoid all the punishment, correction, shaming, criticism, blame. Oh how she wants to please them.
Oh, she is so lazy, that girl. She absolutely will not clean her room, she is so lazy, she has to be punished to get her to even try anything new. That child is driving me crazy, I have to keep after her all the time, and she runs away and hides when I scold her. She hides whenever she gets home, and It is getting hard to find her when I want her to do something. She deliberately avoids her responsibilities, she does not do her homework, she dawdles coming home from school, it sometimes takes an hour longer for her to get here, and there is housework to do and kids to watch, and I need her to take responsibility for being part of the family, she is angry and has tantrums all the time.
I hate being around her, she is surly and uncooperative, she is slovenly, doesn’t care about her looks, won’t help other family members, doesn’t share, fights with the others, refuses to share or be a part of the family, and is uncooperative no matter what I ask or tell her to do. She never appreciates a thing I do around here.. So ungrateful!
I would send her to a children’s home in a heartbeat, maybe then she would appreciate her family. I tell her so frequently, maybe she will shape up then! Maybe then she would behave. This is so difficult, she is such a problem. She could do it if she would just try!

As an adult:

Co workers say you are difficult, you isolate yourself, you are not a team player, you seem to put others down and feel superior. You don’t participate in company events, you argue or criticize over work projects and how to achieve them. You question and pick apart every statement by others. You are overly strict about structure and keeping your files and information : or you are sloppy and disorganized, your workplace is a mess You better shape up, change your ways, or you are likely to lose your job. You can do it if you try. You simply don’t care enough/ think you are so superior, you don’t feel the need to change.

At home. I am the only one who ever cleans, does the chores, cooks, does the laundry… or: you have to control everything, why do you constantly yell at me because I used the wrong tool or put the mop back in a different way? Why can’t you just pitch in when you know there is a job to be done. Why can’t you help when I ask you? Don’t you care about my feelings? You don’t love me, you always, you never (fill in the blanks). If you just tried, you could : (fill in the blanks)

Does any of this seem familiar to you too?

Imagine being in a nursing home, being labeled willful, challenging, uncooperative, resistant, and having endured this sort of thing all your life, never having understood that it was not “all your fault” and that your neurology was the cause of so many struggles and pains of the past. This is the truth for so many elder adults today.


Knowing your autism diagnosis even late in life is key to self understanding and thereby learning to also understand others. It is also the key to understanding of others who interact with you!
So much of the past is suddenly understandable, forgivable because nobody knew Autism had its way all your life. Nobody could see it, nobody understood. Knowing your autism diagnosis now is the key to adapting, understanding, self care, and healing.

Every Day Autism

or: Autism Every Day


In the process of finding myself as I age, I have been able to make many adjustments to my life that make things more comfortable. Everybody must do this, arrange our homes, our schedules, our routines, etc to make things work for us.
I am often able to simply go through life without a lot of struggles because I have made accommodations for myself.

Over the past few days, we went to visit a family member in a place unknown to me. We joined other family members who were there as well. A joyous reunion!
We stayed several days and then drove home again. Not something that happens very often in my life.

Being newly diagnosed and still becoming aware of my own autism and its struggles and strengths, I thought about my newly discovered diagnosis related to this novel experience, and had a series of “aha” moments.

In my recent experiences I was reminded about how much of my life is affected by my autism and I am gaining more perspective on my own struggles and how it affects others as well.

We drove about 7 hours one way to get there. We stopped twice. We had our dog with us .

I definitely needed my sun glasses to help control the flashing light and glare of light and shadow. In many places sun through the trees made powerful strobe effects. I understand why I get car sick/motion sick… my visual and audio processing can not keep up! I was mildly nauseated to almost completely sick – fluctuating at various times. I felt definitely disoriented, and anxious through out the trip. These things have been true whenever I traveled in the past. Now I know why!
( autisim and associated neurological processing struggles)

I was anxious about getting lost, anxious about the high speeds my husband drives at, anxious about his driving (miles and miles of accident free driving in his history) hypervigilant and fearful all the way there (and back). The dog did not travel well, and this added to my anxiety and concern.

Wearing masks and trying to avoid people, cleaning hands and etc at rest stops (we brought our own food in the car to avoid extra contact with strangers, etc) , also added another unfamiliar and very uncomfortable dimension to trip taking.

When we got there, our other family members were there, and we had a happy reunion, hugs exchanged, and days of talking and eating ensued. I found I could not follow or understand most of the information being exchanged. Everybody talking excitedly at once left me covering my ears, asking for clarity, needing explanations or lots of repeated statements, etc.
After several days of working hard to follow, understand, communicate, reach out and interact, I have wiped out my “coping tools” and need time to re charge and process all that input. I suspect I missed about 90 percent of information exchanged. The love and joy of our being together at last overshadowed this and compensated for a lot of the things I know I missed.

I woke hours before everybody else. In my everyday routine, I rise around 4 Am, I go online for a few hours, prepare my coffee and make breakfast, go back online to catch up on my autisim forum groups, do research, visit pages I use very day. No computer here, mine is a desktop and not portable. I read the only book I had brought with me the first morning I was awake.
I had not planned on hours alone in a strange place without resources to help me through… no computer, it was freezing cold in the unaccustomed air conditioning ( welcome during 90 degree day times but frigid at night and early mornings.
I slept very little and felt lost a lot. I had no resources to self accommodate. I had not even brought a sweatshirt or warm clothing.
I was invited to go on a couple of excursions in the big city nearby, but I became anxious at the thought of it, it had not been planned, I was not driving, I did not know the city or anything about it. Too big, too scary, too unknown. If I had a few days to prepare and to study maps, write instructions, print or draw a map or two…. I might have done OK… as it was, everything was unknown and unexpected. I don’t often do things without previous plans and insights, “impropomptu” is not part of my usual life practices.


I go to bed when it gets dark. The others stayed up till the approach of dawn and slept 4 to 5 hours later than I did.

We ate together, we talked, laughed, remembered, shared love, memories, insights, and enjoyed each other’s company. We will all no doubt need lots of extra time to rest and recoup, adjust and return to normal. ( all of us have neurological struggles of all sorts)
I have once again become aware of my autism and how much it takes to step outside the safety net of routine and familiarity, isolation and structure, and of the exhausting effect of the attempts to keep up with rapid changes, attempts to understand new and different surroundings, and to understand and communicate within groups of people, even very beloved people in social interactions , situations, locations, routines and new experiences, solo or shared.

Now two days home and lots of hours of sleep, normal life resumed at our usual quiet pace, I am beginning to recover my emotional, intellectual, and physical equilibrium.

I suspect it is going to be even more difficult as I become older. I need to think a bit more about how to make the adjustments I will be needing. I am so grateful for the opportunity to see those I love and care about most deeply, also for my new and deeper understanding of my own strengths and weaknesses in the new context of my autism and the ways I must do things to be at my best.

I had not stopped to consider “every day” autism, the challenges I deal with every day when those challenges are suddenly transported to new situations, environments, experiences, etc.

I sometimes think I am doing very well.

Experiences like this, positive though it was, remind me of the limits to my established ways of coping.

How much more difficult for those brothers and sisters in autism who have so many challenges I don’t have??

How much more difficult for those who don’t have choices to participate or to travel, or to be thrust repeatedly into new and bewildering or frightening situations?

The thing that is different now is knowing I do experience “every day” challenges that others simply don’t have. Diagnosis is life changing.

Economic Realities of Autism

Personal income potential for the autistic population.

If you are autistic ( have autism?) and are an older adult like me, how many jobs have you held? How many jobs held included being bullied and or harassed by bosses, co workers or other associates?
How many of those jobs were high paying?
How many jobs did you hold long term (more than 5 years)??
I feel I can safely guess that you have held many low paying jobs, have been bullied and harassed, and have not held many of those jobs more than 5 years. Of course not everybody’s experiences will be the same.

Readers can guess where I am headed with this line of questioning and comments.

Of all the topics discussed on the autism forums I attend, jobs are in the discussions most frequently. How do I get training for a job? How do I know what to do in certain circumstances in my job? How do I keep from being bullied on the job? How do I apply for a job? How should I dress for a job interview? Should I reveal my autism? Should I ask for accommodations on the job? What jobs can be done at home and how do I set myself up in that business?

Due to autistic struggles, many of us find it difficult to interact with co workers or the public in work positions. Many report leaving jobs due to aggression and bullying from bosses, co workers, and customers although in general most of us get good grades for actual work performance. We can do the work, we struggle with social aspects of the job.

Studies have reported that autistic people have harder times finding jobs, keeping jobs, and working with others. Discussions in autism forums seems to reflect this.
Additionally, studies I have read say that autistic people are at higher risk of unemployment and homelessness. Gotta be related, right?

In a recent discussion online I asked what accommodations were needed most for adult autistic people once they knew of their diagnosis. Second after asking for counseling to help adjust to the new identity of self as autistic, was help finding and keeping jobs… job training, accommodations, aid in applying for jobs and matching skills to work on offer, all were mentioned as being something the adult autistic community needs and wants.

In some places agencies offer job placement help, training , skills testing, and social service agencies sometimes offer grants or have volunteers to help guide unemployed people to find suitable and sustainable work. As in many other areas of life where autistic people say they need help, this seems to be difficult for autistic populations to access. How can we find those autistic persons who need and want assistance with so many aspects of work and get them connected with the right agency, the right group, the right training or classes, the right office, social worker, volunteers or case workers? I don’t have answers, but I am learning more specific things about needs of the adult autistic community.
First thing on our list should be to make these agencies aware of our presence. Today adult autism from age 18 to 100 is not known or understood… autism is thought of as something related to children who get “treatment” early and are somehow magically no longer struggling or needing services when they become adults (age 18 to 22 depending on laws in your state). 5+ million adults over age 18 in the USA alone are autistic. ( CDC numbers according to the last census) and the majority of us are not diagnosed. How can we make society aware that autism is “for life” and not just for kids???????? I hope somebody finds some answers!



Get READY now

What if there is an emergency?

Recent events have been on my mind lately. A good friend spent hours watching firefighters battle a huge blaze in an apartment complex across the street. An area the size of a city block was lost. All the people who lived there lost their homes and belongings. Certain surrounding areas had to be evacuated as well. Others were put on “standby” alerts.

People in the state where I live lost everything when an old dam burst and allowed water from the recreational lake it had created to inundate the subdivision and part of the large sized city just downstream from that location.
People who lived there lost their homes and belongings. Somebody I knew there was without utilities, including water and sewer for several days as the area began to recover.

There are chemical spills, forest and urban fires, floods, earthquakes, violent damaging storms, civil unrest, and many other reasons why people must suddenly leave their homes , evacuate certain areas, and try to begin new lives in places that are strange to them.

Do you have plans for such an emergency? Now is the best time to think about it, as terrifying as it might be.
Emergencies do happen in every part of the world, every day.

Our autistic inflexibility can be an extra problem for us in emergency situations. We can be so shocked by rapidly threatening events that we become ‘frozen’ and unable to act for ourselves. We may not be able to do the things that need to be done quickly in such an emergency if we have not planned and thought about what we would do and made certain things ready “just in case”.

The flood issue struck close to home. We live in an area close to one of the Great Lakes in the USA, and there is a river through the heart of town, much beloved, tamed by no less than 4 dams in regions above town and in the middle of town as well. If one of those dams broke, would/could the others follow? The government agency that inspects the dams says they are reaching the end of their span of usefulness and they are not completely stable. I have been thinking about what we would do here, if there was a flood situation and we had to be evacuated.
We have important papers we would need to take with us. We do not have a trailer or access to one to bring large items with us. By the time we got our files, our pets, our clothing and medications, food and water for 3 days, sleeping bags, etc. we still would have to find a safe place to go, figure out a safe route to get there, and figure out how to proceed to live our lives from there.
I am making a check list and gathering things we might need into one area of our home, and packing up what I can ahead of time.

Something that might help you think about emergency preparedness is the usa government website ready.gov What possible threats are most likely to cause emergency evacuations near you?

I began to prepare for emergencies even before I knew of my autism. I lived in an earthquake prone area in the south of my home state and there had been a lot of publicity about “the big one” – a huge earthquake being possible on a nearby extended-area fault zone which had been inactive for well over a hundred years. I had small children and the stories of possible damage worried me. So I began preparations.

I packed an emergency bag for each family member, one complete change of clothing plus a couple extra socks and underwear, and shoes. Shoes are so important in case of night time evacuations and possibilities of having to walk in areas with broken glass, damaged buildings, down trees, etc..

I remembered to pack clothing that could be used as night clothes in a public sleeping situation. I packed a towel, washcloth, toothbrush, toothpaste, etc in the emergency bags (these were backpacks). I packed a comfort toy and non perishable snacks in the kids’ bags.

I packed a bag for the pets with collars/ harnesses/ leads, dishes, food enough for 3 days. I packed the contact number for the vet and included letters for “permission for emergency treatment” as well as all health records for the critters.

I packed food and water for 3 days for each family member as well.
I made sure we had copies of our birth certificates, our social security numbers, emergency phone numbers (family, friends, etc we would need to contact in case of emergencies , doctors numbers, health records, records of all the places we paid our household bills, so we could terminate service, ask for extensions or help restoring services, tax records, etc.
Insurance cards and copies of plans plus contact numbers went into the bags, as well as all the contact numbers and account numbers for the bank, credit cards, etc etc.
I got extra prescription drugs for family members and put those in the bags too. I had a little first aid kit and a small radio that ran on batteries, flashlights and extra batteries. I had sleeping bags and blankets and pillows stacked and ready to pick up and put in the car.

I began to be very conscious about the level of gas in my car’s tank.
If we had to evacuate I had seen the television and news articles showing long lines with waits for gas and people’s cars abandoned by the side of the road due to running out of fuel.

Especially if you live in areas that are prone to ‘weather events’ or known hazards, please consider giving yourself a huge advantage by insuring you are ready ahead of time as well as you can be.
Emergencies can happen at any time. They happen to everybody.
Being older and autistic does not mean we can not give ourselves the accommodation of being ready to react and save precious time and perhaps our own and /or our loved ones’ lives.
I do not dwell on scary thoughts surrounding these “what if” scenarios, but I have peace of mind knowing I will know what to do if the time ever comes that I am called on to act and react quickly for safety and well being of my household.
Do you need an emergency plan? How will you respond?

Grief and Autism

Defining grief and discussing feelings of loss and sadness surrounding Autism

This is dangerous ground. Issues surrounding Autism are sometimes very political and raise great emotional reactions. Ideas about grief are among the most controversial, discussed, ranted over, rage-raising and distressing issues on many autistic forums and blogs today. I am about to try to sort some of the controversy, anger, shaming, blaming, and distress. Instead I might inadvertently add to it, who knows?

I spent hours reading definitions of grief preparatory to writing this.
Grief can be explained as a normal or natural reaction to loss, deep sorrow in reaction to change of any sort, the usual being over loss of a relationship due to death. There are also aspects of grief in loss of expected outcomes or change of expectations or plans .

Grief is not simply feelings of loss, but also a ground for conflicting feelings of guilt, anger,sadness, relief, or release. We can feel sorrow over the loss of a parent and still feel relief over their release from suffering, from the difficult behavior or painful relationship, and feel guilt for feeling the accompanying sense of freedom. All of that is part of grief, and there is often much more.

In natural cycles of grief there can be stages of denial, anger, bargaining, depression and sadness, and acceptance. These can happen in stages, and can be repeated over and over in any order, sometimes simultaneously, other times remaining in one stage for long periods of time.

Many people may need support and counseling or therapy to help with grief. It is not uncommon for adaptation to be incomplete or adjustments to be unhealthy in our search for consolation , solace, and peace over our place in the midst of our losses.

The thing that brought grief to my attention was the third reading of Tony Attwood’s excellent book on autism. “The Complete Guide to Asperger’s Syndrome.”

I read it through the first time when I suspected my autism but was not sure. I thought much of it was written only about children and did not see how much of it applied to me. Then I read it again and recognized so many traits and experiences of my own from my childhood (looking at it and comparing it to my younger self). The entire book read from the aspects of my own childhood was filled with “aha” moments.
I was amazed and so interested… it explained almost everything about my early life. This was it!

The third time I read the book, something very strange happened. As I read those descriptions of childhood struggles I had the urge to cry uncontrollably. I felt sadness and loss and immeasurable helplessness and confusion. I was re-living my childhood emotions. I felt the feelings I had felt in all of those impossible situations from my childhood, the guilt, the anger, the sorrow, overwhelming sorrow and sadness all wrapped together in one experience, each situation the author described bringing forth a flow of memories of similar situations from my childhood, adolescence, and teen years.
The most predominant of these was the deep sorrow I had for myself and my struggles.
I experienced this feeling for most of my life. Feeling nobody understood, nobody cared, I was lost and helpless, feeling I was the cause of everybody else’s troubles. I remember being told over and over to stop feeling sorry for myself. I remember wailing ” I don’t know how” .

I can remember so many tears and so much distress. I remember begging for therapy, a counselor, for somebody to help, and being told repeatedly that “there is nothing wrong with you”.
I just needed to shape up, to get with the program, to shake it off, pull myself together and TRY..to do right, to be good, and to stop being selfish and bad. I never understood how I was supposed to do these things, but I was to do them by myself by willpower and strength of character. The feeling of futility was immense.

OK, back to grief. I believe I was trapped in grief and despair. I knew I needed help and comfort and that I was not ever ever going to get. I had a need for understanding and compassion for the struggles nobody seemed to understand, and took for deliberate willfulness and acts of evil. I needed explanations, insights, support and directions, I needed details of almost everything explained in depth . I knew I was not going to get them in my home situation.
I came to the stage of acceptance eventually, but the underlying sadness was there throughout most of my childhood and young adulthood. I spent my early day to day life not only in fear and dread of any interaction or mistake I might make, but also in grieving for the things I was pretty sure others had somehow obtained but that were forever out of reach for me.

Grief for loss of loved ones is called bereavement. It is a reaction to losing through death, divorce, separation, life changing disability or other circumstances. I have always processed this sort of grief more easily because the “why” factor is usually evident. The loved one died, had health changes, was no longer in love , moved far away, all concrete facts that don’t have that “why” factor.

Now we come to an opinion that is not popular with many autism groups. There is a huge backlash against parents of autistic offspring who lament online that their children are suffering and wish that they were not autistic.
I find the anger of some autistic people may be misplaced because the distress the parents are showing is at their own helplessness to help their struggling children, some of whom are very heavily afflicted with many of the worst features of autism.
I think it is natural grief that is showing, however poorly worded in forums or blogs. The parents are truly grieving because they see all sorts of things that they have been helpless to prevent and to aid.
There is a loss of expectations for a normal childhood and adulthood, a loss of dreams for a bright future, a loss of the idea of “what it was supposed to be”.
I understand the angry autistics’ reaction to the spoken wishes of so many parents saying they wish the child had not been born, that they wish the child was not autistic, etc.
In many cases such children are killed by their parents. In many cases children are abused by their parents.
In times of the past and today, many wish for elimination of pregnancy of a potentially
” damaged ” child , society of today deeming it is OK to select which pregnancy can be terminated , the demand is there for tests for autism as there is for down’s syndrome and other genetic conditions. To be an autistic child and hear that you are unwanted is probably a very common state. I heard it too. I understand the reaction against such statements. I understand the reaction against being told we are unwanted.
I understand the pain it causes in our own autistic hearts and I suggest that the anger we feel is grieving of our own over things that we have missed, have lost, have never known. I have no answers. Grief is part of the human condition and will be experienced by the vast majority of humans today. Grief has been the hardest to sort and understand of all the almost constant emotions of my life. Now with my new understanding of my own autism I am making progress toward sorting it out.
I have no answers but find it difficult to focus all of my rage on the parents in these support groups who are feeling loss of ability to help their children, who feel grief at the things they want their children to be able to experience or goals they will perhaps never attain. I don’t think it is realistic to blame the behavior of a few parents on all parents of autistic children, any more than we all recognize how unfair it is to blame ourselves for our autistic struggles, or the behavior of a few autistic people .
I may write more about grief and autism as I continue to sort and to understand. Mean time, I want to make a call for unity. Autism needs different perspectives of diverse people to continue to help us all understand the many ways we are affected, our needs, our self understanding, our struggles and our triumphs. I hope we can refrain from tearing other grieving people apart in our quest for “justice”, “fairness”, etc.
As human beings we are all in this together. Let kindness and not anger and retribution win this one.


Who am I ???

Finding your authentic self after diagnosis


There has been much discussion lately, in the online forums I attend , about masking and finding one’s own identity.
How to drop the mask and be more authentic? How to know who I really am beneath all the adaptive and self protective behaviors I have learned over my lifetime? How do I know which parts are “real” and which parts are camouflage for self protection or ease of coping?

I was at a loss for a long time about these questions. For me a lot of these questions did not apply because as I had aged, I had adjusted my style of dress, my social behavior, my willingness to put up with discomfort, etc.
I had become more authentic to myself for the most part before I learned of my autism.

It might be a process of ageing that we become less willing to put up with social and physical discomfort or meaningless rituals or distressing social situations, or I might have been lucky to have sorted out sources of discomfort and to have allowed myself to discard those things that were most difficult and distressing to me.

I understand the need to sort it all out, and to self accommodate in order to have the best experiences that life has to offer and to eliminate pain and discomfort where we can.

May I suggest we start with the things that we find most difficult and distressing? By figuring out different ways to do things, we can eliminate at least some of the things that are hardest for us to tolerate.

I learned to avoid physical discomfort first. Stopped spending hours on clothing, hair, makeup, and worrying about being “in style” or if I looked right. Flat shoes, loose fitting clothing, easy hair cut, minimal makeup applied only for very special times. Works for me! Even within dress codes, unless a certain specific uniform is required, there is usually some leeway.



I got rid of the scratchy couch that I could not bear to sit on, the bright flickering fluorescent lights. When I lived alone I did not use TV or Radio. I now remove myself to my quiet zone if my husband wants to participate in things that drive me wild (TV and Radio for example).
I have bright clear lighting that doesn’t flicker in places where I need it for reading and close work.
I stopped forcing myself to go to concerts, listening to podcasts or videos, trying to interact in large groups (4 or more is a large group to me), stopped going to restaurants, shopping malls, and other places that caused my sensory struggles to make me anxious and put me in ‘stampede mode”. What was the point?
If things like wedding receptions, anniversary parties, retirement parties, etc send you into panic or meltdown, consider a congratulatory card, note, email, or phone call along with polite regrets.
( you don’t have to explain, just say you are sorry you missed their big day but wanted to send congratulations or whatever message you’d like to give).


I found new ways to get a lot of things done, adapting them to my sensory struggles so that I no longer suffered loud noises, chaotic surroundings, etc.

In replacing those old painful experiences I found joy in solitary walks in nature, taking photographs, doing crafts, listening to my choice of music (peaceful or upbeat and not dissonant, no lyrics since I can’t readily process spoken or sung words), I found the ‘real’ me.

I lost a lot of anxiety and anguish by simply declining invitations to loud parties, noisy social gatherings such as dinners in restaurants, classrooms, malls, etc and substituting meeting with one or 2 people for quiet shared activities.

It may require others in your life to make adjustments too, or you might need to compromise to keep peace, but I urge you to find your most distressing activities and find ways to eliminate them or change them to things that provide pleasure or at least reduce discomfort.

Change clothing, change shopping habits, change the way you socialize or interact with others, change decor or arrangements within your home to accommodate your worst struggles. Many of us have it in our power to make adjustments that can make life so much better. You do not have to do anything one certain way, or in many cases you might not have to do it at all.

Sometimes we need to just stop and consider alternatives. Change can be scary, but taken in little bites, and not all at once, sometimes changes can bring about a lot of relief and comfort in exchange for the pain, anxiety and frustration.

What can you do, one step at a time to remove painful experiences from your life and to substitute or build new and pleasant experiences for yourself?

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.