Things to do before its too late

Time is moving on.

We who are at the end of our lifespans should be thinking about how to succeed safely with failing strength, failing vision, failing thought processes and slower reaction times.
Oh the joys of ageing. My father always said “it beats the alternative”. I suppose it does indeed.

I am going to speak here about a few things brought to mind recently by a dear friend’s experience with a fall at home. She lives alone.

Folks who live alone are at special risk because they lack assistance in emergency situations. Folks who are isolated from the community or neighbors are less likely to be discovered if they have a fall and can not reach a phone or other device to call for aid. I know many autistic people are quite isolated. What can you do to protect yourself and ensure your own safety?

If this is your situation, you need to take immediate action to protect yourself in case of emergency. 30 years ago the ad with the words “help! I’ve fallen and I can’t get up!” were a laugh for the youngsters. Now those youngsters are the elderly of today and its not so funny.

My friend fell at the bottom of her basement steps and could not get up, and it was hours before she was rescued and taken to the hospital where she needed surgery to bolt her bones back together. Only her inspired use of the alarm feature on the fob of the car key she had with her was able to eventually summon a curious neighborhood person to seek out the reason for the constant alarm sounding. It took a further 3 days to contact me and let me know what had happened, so that i could offer assistance for care of her pets and her home. Prior preparation of an emergency contacts list might have helped. We had never discussed what either of us would do to help the other if needed. It could have given peace of mind if we had!
It set me thinking, and worrying about those autistic elderly who live alone. If you fell and were injured, how long would it be before somebody would find you ? If you become injured, is your house set up to accommodate a cane, crutches, a walker, a wheelchair, grab rails for positioning oneself while in the bathroom or bathing, getting up from a chair or sofa, your bed? What things can be done right now to prepare for future disability? We all like to think “it won’t happen to me” and go on our way, but statistics prove otherwise. We are much more likely to need aids of some sort as we age, than not. Most people will spend an average 1 to 3 months in a nursing home or similar facility toward the end of their lives.

If you are alone daily, do you have anybody who checks in with you frequently to see that things are OK? Have you tried to arrange furniture and remove obstacles and trip hazards where they exist? Have you got a safe place to prepare food, do you use hand rails when going up and down stairs? There are safety check lists available all over the internet. Take a peek and think about what needs improvement.

Do you have a list of phone numbers of people you can call on for aid if needed? How would you care for pets, dependent others, your home or other obligations if you were suddenly confined to hospital or nursing home? Do you have permission written for your pets to be cared for by your vet if you are not able to? Most veterinarians will not allow just anybody to bring a pet for treatment without your written permission and statement of responsibility. Does your potential pet care person have your vet’s contact information and pertinent records?

Do you have a power of attorney and do you have a living will ( discusses what you want for your care if you are unable to speak with your carers about it at the time you need help)? Does your power of attorney or other trusted person know where to find things like your will, banking details, important people to notify, etc??? These are all things to make sure you have ready if you need them. If you have a fall or other sudden emergency it will be too late to try to set all of that up. Think about it and take action!

It is good to talk to others about these things ahead of time and to have a plan in place. I am currently spending some time trying to learn about the devices one wears as a bracelet or necklace which can detect a fall or put one in touch with help at the touch of a button. There are many plans available and many levels of access… from constant monitoring to check ins scheduled, to call only when you need aid.

I urge all older adults to give thought to what you will need to contact help in any given situation, and to set a plan into motion.

The steps you take now, before you need help, may save your life or be the difference between recovery and lasting disability. How would you get help if you fell far from your phone or your home, were trapped in the tub or at the bottom of your stairs?

What things will help prevent falls, help you get up from lying on the floor or a seated position, will help you with every day physical needs such as feeding yourself, bathing, toileting, dressing, pet and household care? Think about it now before you need it. Then Do something about it! Protect yourself. Statistics tell us most of us will be experiencing such things as we age.

Emotions and Autism

Sorting or recognizing emotions is something not addressed too often in discussions about autism, yet I see it as being one of the most troubling features of my autism for most of my life.

I am not sure how my emotions got so tangled. How much was due to the dysfunction of our family, and my position in the dynamics? How much was due to the autistic inability to recognize the emotional state of others? I was dependent on others to explain the world to me, and for the most part the explanations I got ( or at least the way i understood the explanations- which were few) were wrong. If I assimilated the explanations I was given and applied them, it ( my perceptions of these explanations ) just dug me deeper into confusion. I really had no idea about emotions, how to identify them, and what they actually meant.

Autism confused me further… when I believed I grasped a concept or a rule, inflexibility did not allow me to see I might not have understood “the rules” after all. I held that rule fast to my heart and mind because I understood somehow that there were rules and I needed to follow them, and the better I learned the rules, the less trouble I would be in, the less angry people would be with me, the less I would be scolded or spanked or scorned or ridiculed. There was safety in being able to cling to a rule. Of course my autistic perceptions were inaccurate, and incomplete. My understanding of explanations was literal, my concepts of ‘the way the world is” were drastically skewed.

So it is no wonder that the world of emotions, which I did not perceive in others until i brought their wrath down around me, was left behind in my search to understand how to avoid the complications by learning the rules. My emotions were not useful, other’s emotions were not clearly understood and the dynamics of what things activate emotions was for the most part very unclear to me. I was told over and over that I was rude, unfeeling, selfish, thoughtless, etc… but nobody ever explained in what ways or how I was ‘being’ all of those things. I was told over and over “you should know”… but that did not show or explain to me how I “should know”, nor yet the specifics of what I “should know” and how to apply that knowledge to whatever situation it was I was in that got me into perpetual trouble.

It was not until I became suicidal and finally found a good counselor that I began to figure out emotional dynamics, both other people’s and my own. I had no idea I was autistic at age 30, that understanding finally arrived at age 66, but mean time the therapist I worked with was able to point out several misunderstandings in my thinking. He taught me to be healthily self assertive… but before I could be self assertive, I had to know what I needed and wanted. I had always tried to please others and appease/prevent their aggression and anger, but never had looked at trying to figure out who I was or what I needed, what I thought about any topic, what I wanted. I went from such family dynamics into a married state that duplicated the patterns at home, only perhaps escalated the severity of the problems in patterns that existed. During that time the therapist encouraged me to write. I had been in the habit of writing long apologetic letters to people whenever they were upset with me. The therapist somehow could see that for me the written word, and writing was my best form of understanding, communication, and self expression.
He assigned me books about making healthy choices and how to have effective and healthy communications to read, and asked me to write about my problems.

This was such an illuminative experience! What most people probably learn in their early teens, I was learning for the first time as a 30 year old adult. It was freeing! When I read back the things I wrote ( I wrote letters which i never sent to the individuals who I had struggles with) I began to understand what my problems were… and the therapist was able to point out how I could choose to respond in different ways to those problems.
Among other things, I had to learn to recognize anger in myself and to express it. I had to learn how to say NO to people instead of bending over backwards and going far out of my way to please them. Family member or complete stranger, I was the servant and the doormat and the “please don’t be angry or aggressive with me, I will do anything to avoid that” person. Think of Archie Bunker’s Edith and you will have a small idea.
I still have to resist this tendency in every day life and measure in my mind exactly what is reasonable and sane for me to do as opposed to simply responding with”yes” to avoid any discomfort.

I had to learn to recognize frustration, sadness, shock/surprise and understand how these emotions could be acknowledged and expressed as well.

I learned communication tools and how to use them. I had empathy/sympathy when others’ pain was explained to me, but had (and still have) struggles with recognizing distress or anger or other emotions in others.
I am better at trying to put myself in people’s places , endlessly comparing in my mind their current experience to any previous experience I may have had to get a clue to what they may be thinking or feeling as I interact with them.

This seems to be something “neurotypical”( non autistic) people know without working at it, they are able to perceive emotion and understand its significance as if by instinct. I still am not good at this, but I have better skills with practice 37 years after the counselor than I had as a child and young adult.

In struggles for everyday function, my emotions tend to get shoved to the background and not recognized or acknowledged until they build into ‘overload’. Then it all comes out. I have got much better at recognizing the first hints of emotions in myself and paying attention to them, and if and when I can do that, I might be able to better respond to a situation instead of its building until I fall apart.

I have to say that going to that therapist was the hardest thing I have ever done. It was also the best thing I ever did in making my life better and easier for myself. I have so much more understanding than I did before.

I have lived with fear and anxiety as being my 2 predominant emotions for most of my life. Certainly in those days, they were the only emotions I deeply experienced on an every day level. Never knowing when you are going to get punished for ‘doing wrong’ and never knowing when or understanding why it happened are powerful motivators to be anxious and worried. As I have got more practice and made better choices , and now especially since I understand that my autism caused so many misunderstandings, and how that worked, my anxiety is leaving me, and I am rarely bothered by depression.

I think both anxiety and depression were because I was helpless in my former roles with no way to avoid the emotional and physical pain.
I learned how to recognize my emotions and how to change my behavior patterns by making better choices. But first I had to recognize that I had the power to choose.

Accommodations for autism?

” I don’t need accommodations”. I actually thought this for a moment or two, but then

After thinking it over, I realized I have all sorts of accommodations built into my living arrangements and routines. My husband accounts for a ‘natural fit’, having an “engineer brain” where he needs everything orderly and his schedule predictable to function at his best. Spouse has all sorts of things arranged a certain way. I naturally fell into his way of doing things long ago, because it worked for me too. Everything has a place where it belongs (our household belongings). If I replace something where it does not belong, I am reminded it does not belong there ( this is fairly frequent and sometimes stressful for both of us ).
We fell into the habit of cleaning every Saturday morning early in our 39 year relationship because we both worked on Monday Through Friday schedules. We still clean on Saturday mornings.
We share the chores of doing dishes, alternating days, I do them one day, he the next. He takes on the extra day… I do all the laundry, odd household jobs, washing floors, (cat care, feeding, doing litter box duty, cleaning the yard of dog waste, taking the pets to the vet) he mows and maintains the house, shovels snow, manages the check book, and cares for the car. We each have roles that are comfortable for us, and we rarely step out of those roles. Predictable routine! You saw that, right?
We schedule any deviation from this by using our calendar (Dr appointments, planned trips, planned visitors, etc) No surprises.
I choose my clothing for comfort and utility. Nobody else controls my wardrobe, nobody else influences my choices. ( NO uniforms, no requirements to dress a certain way for the office or other conducting of business, no pressure from spouse or companions to dress in certain ways.)

I go to my little work area in the basement or to read in the bedroom with a shut door during the times he plays the radio, watches TV , or DVDs . I have a special place for all my rock and fossil collections, my crafts, my plant hobby, my aquariums, and they stay in those areas. ( I guarantee they are not as organized as the parallel spaces alotted for my husband’s interests!)
Having a spouse with a craving for order has been a blessing, because he provides the structure and stability which I lack in my own organization skills.

My retreat from the radio and video/DVDs/television to my favorite nest ( recliner with fuzzy blankets) has been ongoing when I realized many years ago how upsetting most visuals/ and associated sounds are for me. He loves his movies and TV programs and in fairness I can’t ask him to stop listening and watching.

I have a craft closet and a work spot in the basement, my aquariums for my ongoing study of guppy genetics, and also my gardening as escapes whenever I need solitude or quiet. I go to the woods or the lake shores I love.
I have earplugs which I use when I can hear noises such as the neighbors’ loud radio when they sit outside on their patio or sun themselves by the pool. I am grateful that I am able to control my surroundings and schedule.

What is it like for older autistic people in care homes, dependent on others to arrange small things like lighting, food choices, temperature, sounds heard, comfort of clothing, bedding, arrangement of furniture, daily schedule, etc??? Every one of these things is so important to my senses in every day life!

Many of my struggles eased when I became able to make decisions like this for myself. I am so grateful that my present is more conducive to comfort and safety/ stability than my former lives. What can we do to make life more tolerable for those autistic people who are not as lucky/blessed/fortunate/ situated/ accommodated as I am?

Remembering the work days and my first marriage, all the social demands, the ‘eating out’ with other couples or co workers, the attempts at being in step with fashion and keeping up with news reports, discussions of current events, pressure to do things like join the company softball league or bowling team…. all gone. Fear and anxiety and desire to escape were constant and unending. I was always sick with headaches and stomach aches, overwhelmed and both misunderstood and misunderstanding.

I have already adapted and made my own accommodations. Even unknowing about the autism, I was able to find ways to cope with the symptoms of sensory and emotional overload. So fortunate!
Retirement is the best accommodation of all. I struggled with bullying and unstated/in completely understood or unclearly expressed or implicit and misunderstood expectations in almost every interaction with others.

Anxiety produced by going to work provided plenty of energy to accomplish things; I almost never disappointed in work performance, but co worker relationships were pure misery. Not understanding why this was so was an added burden. Self doubt, self blame, self hate. Why couldn’t I fix it??? What a relief to not have those every day stresses. Retirement removes all of that and allows me to follow inclination to research on the internet and in books, explore nature, choose my companions or choose not to have any.
My anxiety is leaving me gradually as I understand more about my autism, but also in my realization that I am ‘safe’ for the most part from the bullying and stresses of my work day. Of course I realize that quitting your job is not an option for most of us. The stress of finding a job that is tolerable and that we are able to perform, and still brings in enough income to afford housing and food is real, and unavoidable. I spent 49 years working, most of us will do the same to survive.
My improvement in my life and level of stress are due to the accommodations I hit upon accidentally, but that work very well for me in my current situation and my new understanding of my needs (something I really never gave much thought to before).

Diagnosis older Autism

Awareness of autism is rising and not a moment too soon.

So many adults with autism are walking around with no diagnosis and little understanding of the condition, due simply to the fact that little was known about Asperger’s/autism when we were young. Only the most severe cases of autism were sought and diagnosed until perhaps the last 15 to 20 years, depending on your location in the world. In other places, autism is still not recognized or diagnosed at all.

We will recognize ourselves ( autistic people) as feeling confused, frustrated, angry, and socially outcast almost in perpetuity, with little rest between any of these. There seems to be little peace to be found in our lives and our struggle to understand most things in our world is real.

Our earliest memories may be of emotionally and physically traumatic experiences due to our inability to process emotional or physical input or stimuli. ( overload of senses and the poor ability to process socially related things is frequent, even before we have words to describe these things)

We do not understand what the world wants from us and why we seem to be unable to do things most of us know intuitively (even before society tells us in many ways) we ‘should’ be able to do. We are frequently castigated, punished and shamed for this disability and struggle to find ways to avoid the negative feedback and to perform as is obviously expected, but so difficult to achieve. Punishment and emotional pain seem unavoidable and this can lead to despair as well as anxiety.

Many of us will have found the world overwhelming and have developed self protective habits as a way to cope. We will avoid social situations, preferring self isolating activities and the quiet and relative safety of a place to hide.

When participating in family routines as youngsters, even when older, we will often be at the center of family disagreements and upsets. Misunderstandings will be frequent and emotional displays will be unpredictable. Many times we simply don’t “get it”.

We usually prefer not to be interrupted in our activities, routines, or in speaking to others.

We seem to lack humor and understanding of nuance. There is usually nothing subtle about autism, it is ‘full on’ full time. We have no sense of timing and frequently no sense of what behavior is appropriate. We have to be told our behavior is inappropriate (and usually we are mortified!).

We are often unaware of how “different” we are in behavior or beliefs, or in the way we dress and act. Some of us become good at copying these nuances. This is sometimes called “masking”. It is changing oneself to fit in without perhaps understanding fully why it helps one to “fit in”.

We are frequently oblivious to other’s feelings and desires, and we usually can not tell when what we are doing or saying is making others uncomfortable.

When told we have caused dismay, distress, discomfort, we are usually upset, because it was not our intention to do so. To an extent, we can learn to be more aware of others, but we often miss social cues that would be obvious to others in spite of our good intentions.

The idea of cold-hearted uncaring autistic people is generally a mis-perception. If we know we cause hurt, discomfort, frustration, or sadness in others, and are informed as such, we are surprised and remorseful. I am convinced that most of us have every bit as much compassion and caring as NT folk, but we are less likely to pick up cues that tell us another person’s thoughts and feelings (we have to have it explained to us). We might not show it, but the feelings are there, and as intense as any other person’s.

We are often poor at sorting feelings out, and worse at finding ways to express them. This is part of autistic differences in mental/emotional processing, and not deliberate callousness on our part.

We are usually known to be odd, quirky, or eccentric, sometimes highly intelligent, sometimes simply “out of it”.

Like anybody else, our skills or interests will vary in intensity and content, but frequently we will have just a few very intense interests in things that seem to be of narrow and restricted topics. Our knowledge of these interests and involvement in them may exceed all other things in depth and enthusiasm.

We may not be “well rounded” in this way, knowing or caring little for much outside that which we are involved in, and often have impatience with others’ interests which are different from our own.

We will have been accused of overreacting to injuries, temperature, sounds, motion, shadows, lighting, things we see or feel through touch or in our emotion. Because of differences in neurological processes, we in truth can be hyper-sensitive, or in some cases have no sensitivity at all to the senses of taste, sight, sound, smell, and touch. It is not ‘all in our heads’ but is as real as any feeling NT people feel, but simply outside the ranges of intensity of what is “normal”.

We may have meltdowns with frustration and feeling overwhelmed with emotions or sensory input, which we find we can not regulate or process at given times. Sometimes our attempts to control this input or to process ideas or emotions will seem rude, violent, extreme, unusual, or odd.

We will tend to self- comfort in many ways: pacing, walking, twitching or spinning, jumping, repeated picking at body parts, twirling hair, chewing nails, tapping fingers or toes, working something with our hands, rubbing hands or other noticeable “different” behaviors.

Some of us may self- harm, or abuse drugs and or alcohol, in attempt to escape the overwhelming anxiety and depression which often presents itself as a result of our inability to cope with our world.

We may lack impulse control, saying or blurting out our thoughts or doing something as soon as it enters our mind, thus being accused of inappropriate behavior frequently.

We may over eat or eat something obsessively in exclusion of much else.

We may prefer one set of clothing to all others, or read or listen to music or watch the same book or movie over and over.

Anybody can have some of these traits, any autistic person may not have them all, or even have more than a few of them. There are many other ways to spot autism, or to suspect it in an older adult you interact with. If you find yourself recognizing Grandma or Aunt Lucy, or Uncle Mike, your elderly sister or the old guy who sits on his porch rocking in his rocker every day from exactly 2 to 5…. undiagnosed autism might just explain some of those odd mannerisms, quirky behaviors, lack of social competence, and their outlook on the world around them.

Autism strengths

I’ve written a lot about struggles in autism. Those are ever present and they are real. Something perhaps less understood are some of the strengths or good traits often found among autistic people.

Powers of observation and pattern recognition are very strongly oriented toward details in many autistic people. Neurotypical/average everyday people tend to see the big picture immediately and to add details once they perceive the concept. Autistic people tend to focus on the details and add them together to build the entire picture from assembling the details. This probably takes longer in most cases, but knowledge gained seems to be in depth and thorough. In this, we are able to spot things that ordinarily might be missed. Troubleshooting of all sorts is appealing because it involves solving a puzzle. Most of us are inordinately curious. “Why” is almost a mantra for most of us. We want to pick things apart and understand the least/smallest things about them. Many autistic people love the challenge of sorting out problems. Many of us have excellent long term memories, many are able to visualize concepts in a very detailed way. We also are known for our “perseveration” which can translate several ways… continual interest in something, continual ‘working it over in the mind’ on issues long since past and over, and in super ability to focus on one task and stubbornly follow the course set ( our son says I am willful) until the goal is accomplished. Indeed we can be extremely single minded over ideas and perceptions. This is not to say that all of us (autistic folk) are like this. Some of us do not have a single one of these traits (gifts, or curses). I am not able to visualize a thing, for example. We might make excellent researchers, engineers, IT workers…librarians, accountants, math related, mechanics, electricians, any place detailed analysis of anything is needed, autistic attention to detail pays off.

Most autistic folk are extremely compassionate and care deeply. This seems to fly in the face of the autistic stereotype often discussed as unemotional and cold, unresponsive to others needs and uncaring. The stereotype is simply not true! The problem lies in perception of emotional issues and perspectives… if we do not perceive distress in others we do not react to it. If it is explained why distress is experienced or pointed out that a person is upset or emotionally hurting, many autistic persons will feel very deep emotions and empathy/sympathy. We often do not show our emotions, we are simply not ‘wired’ to make emotional displays under most circumstances. This seems to be something that comes naturally and spontaneously to neurotypical people.

Because we may not show/express our emotions on the outside, it does not mean we do not feel them within. Autistic people can feel quite passionately about today’s issues and will persist in championing a cause with heart and soul.

For many autistic people, reason and facts dominate emotion. This means we may not respond in the usual emotional (distressed, panic, fear,anger, dismay) fashion under stressful conditions, such as emergencies- fire, accidents, injuries, crisis situations. We may be able to more quickly see the details in what has happened and what needs to be carried out immediately without the spontaneous emotional response typical in the average population. For this reason we may make good workers in the medical professions, especially rescue and emergency doctors, nurses, EMTs, fireman, etc. .

Again I would like to emphasize that these traits are not common to all autistic people, just as traits, skills, gifts, or abilities of any person will vary, so do those of autistic people.

Autistic Anniversary

Happy anniversary to me!

About this time last year I was finally certain I am autistic.

I joined several online autism groups and began asking questions.

I was amazed as I discovered so many things I struggled with were “like that” because of autism. I am still learning about ways I have been affected, and each time for just a few moments I wonder… what would I have been like, who would I have become, if I had not been autistic?

Other older people have commented that getting a diagnosis nearer the end of your life than the beginning is a shock. Many have compared diagnosis at this age (I was 65 when I first suspected I was autistic, and age 66, when I was certain.) to the grieving process.. Shock, denial, bargaining, grief, anger, acceptance. I have now completed my first full year of knowing my diagnosis. I have gone through that cycle over and over.

It is popular in some autism circles to speak of autism being a gift, or simply another “operating system” rather than a handicap or a disability. I am firmly on the side of its being a disability. I have struggled with too many things in life that would not have been a struggle had I not been autistic.

Painful interactions with others top the list. Had I understood emotions, my own and others, and understood that I causing pain to others, had I understood that any correction or misunderstanding on the part of others was not a mortal mistake and been able to accept that, offer apologies and move on, much suffering of others and my own would never have happened. Perhaps I would have had friends and fewer failed relationships, and not always have been in trouble with people at home, in school, at work. Perhaps estranged family members would not be estranged. Perhaps my first marriage would not have failed. No way of knowing for sure, but perhaps.

I might not have gone through life afraid. I might have gone to college, might have had a profession. Alas, all too late.

The Best thing about finally knowing I am autistic is that now all of that other chaos and pain in life finally makes sense. I finally “get it” and can see how autism has affected every day of my life, and how it still affects me.

The huge difference is that now I can forgive myself and others, now I have a lamp in the darkness, I can see how autism surrounds me and encloses me, and also now, how I can smooth my own path and use new ways to survive and even thrive.

The growth this year in my personal understanding and the relief I have in finally knowing about autism is boundless. So many formerly impossible things are understandable and manageable in context of autism. So much that was perplexing, confusing, frustrating, and depressing is now understood and outcomes of any activity attempted are not presumed to be inevitable failure. What a relief to know about autism and that I have so many “new to me” options and outlooks!

Diagnosis progress

In the ongoing story of seeking diagnosis, I finally saw somebody who I could communicate with. He asked questions, I answered, he gave feedback, explaining what he was looking for in the answers I had just given. I believe he will explain all details with real knowledge if he says I am not autistic… He knows and understands autism, I can tell from his questions and explanations, and I have the input of people who left comments online (autistic clients!) and the referral of the adult woman who he diagnosed years ago when he was less experienced.

I have confidence we will get real answers this time. I had an initial meeting in April and will go see him for diagnostic interviews in July, when my insurance will qualify me for that appointment .

Meantime he has given me “homework” forms to fill out and bring, and the same for my husband. I am to bring some examples of my current deep interest, fossil sponges I have collected from this area to “show and tell” … I will also bring evidence of my lifelong interest in horses (a drawing) and a short explanation with photos of my other interest, color genetics of guppies.

I have plenty of time to think about the interview and prepare, also to fret, which is one of my best skills, much to my regret.

My attitude and worrying has changed a lot since I realized I am autistic. I give myself room to make mistakes and be human, I try to do better self care, I have learned to file past incidents in a mental file called “finished business” and I am being less and less bothered by bad memories being replayed constantly in my head.

Autism perseveration has plagued me for years, my mind bringing up past incidents over and over, making me re- live them, perhaps trying to figure out how I could have done better, or to understand what happened. Now I know it was autism for the most part which interfered in those life incidents/interactions and I can look at the incident from a better informed platform, and say that now I understand what happened and why, and then file that memory under finished business.

No need to re- live the suffering and sorrow, grieving, dismay,self punishment or punishment/anger and harsh words and acts of others, and regret over and over.

Knowing I am autistic has set my soul free.

I deeply desire that autistic others ,who do not know the reasons for so much of their pain in the past, will learn of their autism and gain the relief I have gained through knowing and being better able to understand oneself and forgive. I did not know, nor did anybody else involved in all those incidents… I can move on now! There will be a new report once I go through diagnostic testing in July ( 2019). More on recognizing autism in older people soon.

Next Phase in Searching for a Diagnosis

It took some time to recover from the shock of the first encounter with the neuro psychologist who claimed to have experience with autism (or his office did).

I decided to go back once more to the Autism Society of Michigan (not an insurance sales unit but the heart and soul of autistic persons united to help other autistic folks. ) There in the group was a woman who had been diagnosed as autistic as a young adult.

She shared the name of her psychologist and I felt encouraged when I did a little internet search and found reviews from current and former clients who appreciated his understanding of autism and who were pleased with his help in their situations.

I emailed his office expressing a desire to set up an appointment with him, and was told that the Dr would contact me soon.

NOTE: This was the step I left out in setting my first appointment… I did not actually talk to the Doctor himself! I point this out specifically so that you can benefit from my experience. I might have caught the lack of interest or expertise of the first doctor, and understood that his first interest was not the client.

If a Doctor will not consent to a pre- interview or a phone consultation, I will now and forever read that as a warning. Patient/Client and how best to serve is not a priority.

When the doctor called it seemed that he understood me and that I could understand him without struggle, even though phone conversations make me fret.

We set up an initial meeting, deciding from the call that he might be able to help me, and had enough interest in my challenge of being so old and thinking i must be autistic, to go ahead and try to find out.

The appointment was set for only a week later! more soon.

Second Phase first attempt at diagnosis.

Having left the follow up session in absolutely stunned confusion, being told in no way could I have autism because of my ability to communicate, hold a job, be married, and be aware of having been bullied all my life… (autistic people don’t do that) I was both shocked and simultaneously frustrated, disappointed, and dismayed.
I was just sure that the answers he gave about my autistic state were wrong… I knew that autistic people could communicate, could work, could have relationships, and could know when they were being bullied. The ideas the Dr quoted to me were from the late 1960s when diagnosis criteria were completely different. Still I questioned everything about my life up to that point… could I have got everything that wrong? How else could “everything” be explained, especially with the alternative diagnoses he saddled me with at that point. ??

I began to think about how to handle what I thought was a completely unfair set-up, where I was assured the doctor had much experience with autism, and in the end finding out he had never diagnosed a single person with autism.
I first sent him a letter (depending on his assurances at the exit assessment meeting that I could, and should, contact him with any questions once I received his written evaluation). Then I emailed him when there was no response. In both communications I requested further appointments to discuss autism, referring to the appointment desks’ original assurances that he was experienced with autism and diagnosis.
Barring more appointments with him, I asked for referral or joint or referred individual sessions with any child autism specialist in his practice- none of the others were willing to accept clients over age 18. (he is head psychologist over about 30 others, counselors and many specialists listed for autism, which was the reason I approached this clinic). It was listed as an autism resource on the “Autism Alliance” page I found on the internet.

No response for a month.

Next step was to contact “Autism Alliance” whose page clearly states that they are advocates for autistic people…. I thought they might like to know that the clinic they recommended was not helpful for people over age 18 and told them of my experience. Two things happened after my email to them… The next day I got an email from the Doctor saying he could not help me. I also got a phone call from Autism Alliance saying they had never had a complaint before, and that their providers were all carefully screened. Then they told me they would be glad to advocate for me and help me find another qualified provider who would be more helpful. I felt as if I had been heard and since they posed as advocates, I did not suspect what would happen next.

I got several phone calls and emails from Autism Alliance, all saying they were working on finding me a follow up counselor with autism experience who would work with me. I was gratified and felt assured the issues would be resolved and I would get a good psychologist. I was assigned my own personal “navigator” to help me find my way through the system.
They turned out to be a predatory insurance sales group who were looking for any psychologist or therapist who would take me on for a percentage of the referral fees.
It ended up that they tried to hook me up with one counselor in my area who would think of this idea as acceptable, a woman who only recently had renewed a lapsed “counselors” license which was either expired or suspended after a couple of years of practice as an infant therapist/art therapist, and who had a sociology degree.( the internet is amazing, all the things you can find if you dig around for a while!)

Insurance was not able to cover visits to this woman at all, but the navigator pressed hard in phone calls over several days. I would have to pay cash but I could get a discount! At this point I realized they were not looking out for my interests at all, but were “insurance navigators” who were in the business solely for profit as getting a cash percentage fee for referrals of any patients. There seemed to be no concern at all about fitting my needs or conditions, but they pushed me, “reminding” me that the diagnosis which the other doctor had given me recommended how much I needed therapy and that I should go!!!! ( it seems as if they had forgotten that his diagnosis was in dispute!) At this point I was alarmed as well as angry!

No thank you.

Please educate yourself about “insurance navigators”, who are definitely “for profit” groups which perhaps may do good for some folks but who were a complete disaster for me. In this case it appears their agenda on the website was quite hidden… and the thing that helped me is because I did not immediately assume they knew what was best for me. I knew the thing they were pushing me to do was not what was right for me, and I questioned why they were doing it. A little belated research and I had the answer.

I told them I no longer needed their services, that I had been able to find what I needed and thanked them.

After a couple more emails and another phone call, with my firmly repeating that I no longer needed their services, they subsided.

I count this a lucky escape, and warn others needing medical help of any sort to be alert when you hear that word “Navigator”. When I once again gather my emotional resources and quell the anxiety this brings to me to re-live it all, I will continue with the ‘next chapter’ in my search for diagnosis.

RECENT DISCOVERY

RECENT DISCOVERY

I am taking a break today from telling about my attempts to find a professional diagnosis and instead tell you of something I discovered last night. I have been interested in social struggles with autism and yesterday I was reading the 2005 book “Unwritten Rules of Social Relationships” co authored by Temple Grandin and Sean Barron. I hope to improve my social functioning.

Each author takes a few pages at the beginning of the book to relate personal social experiences and comments or insights about social interactions. I have a very difficult time relating to Dr Grandin, since she sees/processes everything so visually and I struggle to understand many of the thought processes she explains. I can only imagine the way she thinks, since I can not visualize at all. ( aphantasia).

I was stopped by this sentence in her comments, however.

“For some kids coming to the realization that making mistakes is okay, or that errors have different levels of importance, is difficult and pervasive and impedes every aspect of their functioning, especially in social situations”

Stopped? No, I was stunned! Of course, now it is obvious, but it took another person to point out the obvious to me once again. It is downright profound in its application to my own life experiences!

I had believed well into my 20’s that I had to be careful never to make any mistake. I was told over and over I was bad and wrong and was punished for any error , and I believed wholeheartedly that I must never make mistakes. It was too emotionally and physically dangerous. I was always upset, nervous, fearful, worried deeply about being “caught” being wrong about anything; it truly did very deeply impede all aspects of my life. I began to unlearn this over the next 40 years, but have never completely lost the anxiety over the unforgivable nature of making mistakes of any sort.

” OH”, the metaphorical lighted billboard in my thinking processes said at long last,

” THAT WAS AUTISM!”

Rigid thinking developed probably before I could even use words… “if I make a mistake I am in danger… I must not make mistakes, must not do the wrong things”, later, “must not say the wrong things”… autism! It was AUTISM!

This added 4/1 2019 to the original post. Somebody sent me a message and scolded me saying my fears had nothing to do with autism, since the idea was probably taught to me. I agree, this is something I learned, but where autism kicks in and is a very real part of my struggles is in the perseveration, the continued rigid thinking that held me in that pattern for over 30 years… my 3 siblings had it figured out before they were out of middle school, but I persisted in being able to see only that original belief in the same way. THAT is the part that is definitely autistic. It is failing to recognize the differences that others might see at once. I ended up getting some very good counseling that showed me I had other options besides those ‘rules’ I grew up with, and could make different/ better choices regarding many things. If I did not make it clear in my first post, let me make it clear here, the autism interference came not in the belief itself but in my rigid thinking surrounding the belief and the inability to independently deduce that I had many options and that there are ‘shades of gray’ in almost every aspect of life. My autistic black and white thinking could not change until somebody helped me see what was obvious to almost any neurotypical person.

I have been very sure of my autism for over a year now, but having lived 66 years never knowing about autism at all, you can understand there is a lot of deep questioning and processing going on.

I spend hours daily reading autism blogs, books, participating in question and answer sessions on ” autistic only” forums… It is always gratifying when I can look at something from my past and see how autism was involved. Finally after all these years to know and understand so many things after so much anxiety, depression, distress and dismay. Autism once again had its hand in my thinking and the way I understood (misunderstood?!) my world and things that happened in it. What a relief to know and understand!!! I got the book in an attempt to learn more about social interactions. That gem was planted in the pages of the very first section. I can’t wait to see what else I learn!