Diagnosis attempt # ???

How things change overnight!

Yesterday I woke up depressed, it had been weeks since we got the phone call from the kind doctor who had begun my diagnosis here in this state, but had become so sick that the work was discontinued.
I have been full of anxiety and hope, dropping to despair as it became evident from his website stating that he has retired in July, and from the formal notice from his lawyer just before he phoned us, that he was not working any more.
The final appointment would not happen.

His ( Dr) lack of calling us back after a phone call to his office as he had directed, plus an email 2 weeks later had no responses.

I was sure this was a case of the good Dr’s health interfering and perhaps he might have more “want to” than “can do”.

Yesterday morning I gave in to the blues and felt sorry for myself and discouraged, determined to look only toward the July 2020 appointment already on my calendar with the Illinois Dr who is a well known author and who I am sure understands autism in adults/elders.

Yesterday while I was out of the house running errands the kind doctor called again.

My husband set up an appointment with him for the end of this month Sept 2019.

I am in shock. Afraid to feel hope or relief. I don’t handle sudden transitions that well, even if they are positive.

Dr said he has good days and bad days but wants to go ahead and finish this diagnosis as his health allows. We are to call or he will call a few days before the appointment this time to confirm that he is well enough to proceed. So many emotions whirling around inside me, so many seeds of hope afraid to sprout, so many doubts that this will finally actually happen, so many worries about “what if he tells me I am not autistic”???

and so on.

Sudden changes and arrangements needed! Let alone the arrangements needed to get downstate, hotel reservations, dog boarding, etc. Thank goodness I have my very supportive spouse to lean on. The days are going to drag now until appointment time and I will have a difficult time concentrating on much at all until I finally know.

I am hoping I can get rid of the diagnosis labels the first neurologist gave me , and not be saddled with those throughout the end of my life. I can see where I might end up being drugged and worse if I am ever hospitalized or must have nursing home care. One look at that chart!!!! Saddest of all is that so many older autistic people with struggles are misdiagnosed every day and some spend the rest of their days in conditions such as I just described. Younger autistic women are frequently misdiagnosed as Borderline or Bipolar and treated with psychotropic meds which do little or do damage to them in countless ways.

I am working hard on a series of descriptions and questions to help identify older adults with autism. I have spent countless hours on the internet looking at studies, at current test forms, at the DSM V , and many more hours reading blogs and interacting on a few forums /online internet groups.
I have asked a couple of these groups to collaborate with me and give input.
Each group has over a thousand members and I have gained much good insight and feedback.
The final description of adult autistic recognition and questions to ask to help understand if one is autistic, will be posted here as soon as it is finished.
The reason I do this is because so many of the diagnostic criteria and the tests and forms available to diagnosing medical entities today are aimed at diagnosing children.
Very few autistic adults present now as they did at age 4, 9, or 12, or even 25.
We learn to adapt, we exchange innocent stims for hidden ones or more socially acceptable behaviors. We adjust ourselves in many ways to try to fit into the world, masking skills probably increase for many of us as we age, but the underlying neurology remains the same and our struggles are real and often overwhelming.
A look “below the surface” can tell the story we have worked so hard to hide.
Knowing I am autistic has changed my life in countless ways, all for the better. I hope presenting these traits and questions will be useful to somebody as a help in finding undiagnosed autism in the elderly.

My own official diagnosis is pending. I hope I can help others find peace in knowing that autism was behind so many of the struggles and the pain of the earlier years in life.

Before I knew about autism

It never occurred to me that I was having struggles that other people just did not have. This is a paraphrase of a well known quote by Alis Rowe.

It was always obvious that I was different, awkward, socially unacceptable, uncoordinated, “clueless”.

I blamed myself, and others did too, for my multiple failures to succeed at so many things that seemed simple to others.

I felt enormous guilt and shame because I was unable to “get it” about so many facets of every day life. I was scorned and punished, bullied and belittled because I simply could not (and people thought ‘would not’) behave in ways they expected me to. I simply had no idea how to do what they thought i should do. I can remembering being told over and over to shape up, to wake up, snap out of it, get with it, to stop feeling sorry for myself… to pull myself together, and I can remember wailing “but i don’t know how”.

Since I learned about my autism I have learned that it is my neurological ‘wiring’ regarding sensory processing which is what makes me different and accounts for many of my past struggles. Every autistic person is different, and struggles with sensory input to varying degrees.

What I describe as true for me might not be true for others. I believe this is one of the reasons it has been so hard to pin down exactly what autism is/does and describe it (autism and its ‘symptoms’) so that it can be recognized and diagnosed, helped where needed.

Sensory input is the way we relate to the world, the way we interact with each other… if one or more senses are skewed or how the processing of the input offered differs, it can throw off our understanding of the world. Things that are obvious to most can be a complete struggle for understanding in an autistic person. Our processing is often different.

If you are autistic, or know or love an autistic person, do you understand how you and or they process information and what their specific struggles are? I am going to list what I have learned about my own processing struggles. Each autistic person will have strengths and places where they struggle the most. I was completely unaware of how I struggled, in what ways, until I began to learn about autism.

Some of the things I describe here are not directly related to autism through scientific studies, but have been casually observed to be common in autistic populations. I list them here because they are still ways I struggle with sensory input. Each autistic person’s list will vary.

I am first of all unable to visualize in my head. I see no pictures there at all whenever people are talking, I can not visualize what they describe. I have an imagination, but it does not show me pictures, and it relies on things i have experienced or otherwise stored in my memory to help me understand. This condition is called aphantasia and is present in about 2 percent of today’s population, both autistic and non autistic. It appears to be random or possibly genetic but no link has been made to autism at this time. However, if you ponder a few moments you will see how this might change the way I process information I receive through eyesight.

I have prosopagnosia, the inability to recognize faces.. I may know you from every day interactions for years and still not ‘see’ you on the street. change hair style, glasses, wear a beard or mustache since i have seen you last and i will never find you!

I had a neuro-psychological test not long ago which confirmed that I have difficulty processing visual things. Videos, TV, Movies, Lectures, Presentations, and so many more things which you see every day are difficult for me to comprehend . I have difficulty learning from visual demonstrations (at work or in the classroom etc) I can look at still photos, illustrations, maps, and the printed word and process them easily. It seems to be things in motion that confuse me and happen too fast for me to understand readily. No fast action sports or games for me! I was the kid they threw the ball to so they could watch me fail to react soon enough and get hit in the face. Very funny! I have difficulty judging the speed of oncoming traffic, for example. Anything done at speed worries me to say the least. I just can’t process it fast enough.

I also have problems following spoken word. No radio, no vocal songs, no narrations or reading out loud… difficulties in the classroom, difficulties with instructions in work situations, difficulties in any conversation… can you imagine what it is like to struggle to comprehend most things around you as they happen? My range of hearing is normal to sensitive, being able to hear higher vibrations and lower ones slightly wider range than average. I always wondered why I liked instrumental music so much better than music with vocal parts, especially women’s …. now I understand that it is because I have such difficulty understanding and processing the words involved.

Long before I knew I was autistic, I figured out that in many situations I needed somebody else to explain to me what was happening or to explain when the event was over: “what do they mean by that”?
I have frequently told people that I need to have things explained to me where others seem to know by intuition or some other means that escapes me. Learning about my autism explained that too!

I talk a lot about what an autistic person does not do well, but very little here has been said about what strengths we have. My tests showed (and I knew before- from experience and learning on my search for information about autism) that my greatest strength lies in the written word. I have good spelling and comprehension, vocabulary tests are well above average. I have a gift for words!
Reading has been the key to my personal understanding my world, and I learn best through printed matter. I have spent most of my life trying to obtain information through the format of print.
The internet has been the most powerful influence in my life since books.
For those of us whose world is opened through reading, to understanding, it is a great gift of a magnitude which I am at a loss to explain.

I don’t have to look at somebody and be distracted by their movement, clothing or appearance while trying to understand what they are talking about, struggling to interpret their body language, their tone of voice, and interpreting their motivations, demeanor, inflections while simultaneously trying to sort the information they are presenting from the other conversations, background noise, activities, etc. I can read what they say and understand perhaps with a few questions exactly what they mean. It is a miracle!

My feelings of touch can be hypersensitive, especially to others suddenly touching me in any way ( perhaps a conditioned response). I hate little stickery labels, pebbles in my shoes are intolerable, as are clothes that cause discomfort. I dress for comfort and not style. I seem to experience most other sensory input in an ordinary or average way, appreciating comfort or discomfort on ‘normal’ levels, except that I seem to have a very high tolerance for pain. Sense of smell and taste seem to be “normal” in range .

So that is the struggle I have to live in everyday life. Not “poor me”, simply an explanation and no excuses… but understanding ‘why’ life has been so hard for me in so many ways has been explained by understanding how presence of my autism has affected my life. My understanding comes with new awareness of how my autism also affected my behavior to others and their perceptions of me. Each autistic person’s inventory of strengths and weaknesses will be very different. Many experience the world through mostly visual means, but please understand the fact that we struggle many times to know and understand things that seem obvious to others. Knowing about my autism will now allow me to better adjust my behavior, deepen my understanding, and give me insights into so many windows that were closed to me. I would love it if I could somehow present the self knowledge of autism to those who have yet not discovered the key to understanding their world lies in that one word. Autism.