Things I have learned

This year has been one of personal growth.

I started this blog in January, thinking I could perhaps keep track of the things I am learning about my own autism and about getting older. I had decided that I wanted to share information about the things I have been learning just in case there are other older autistic people like me. At age 66 I thought I was most likely autistic, by 67 I was sure, but I did not get an “official ” diagnosis of autism until I was 68.

Everything in my life has changed due to my new self understanding and my knowing that diagnosis of autism. My disabilities are still there, I have the same struggles and the same weaknesses/ the same strengtsh. My unusual neurology has not changed, I was born this way, I will die this way.

Today I am looking at myself in new ways. I had not looked at myself or understood myself at all in the years before discovering my autism. I had learned to adapt my behaviors for survival and coping ( so very poorly with no understanding) and I can congratulate myself on living to the age of 65 without the knowledge of my autism. I am definitely a survivor.

Life is finally understandable with my knowing about autism. I can look back and see my traits through the window of autism and know that my failures, misunderstandings, pains, and sorrows were all affected by my autism and that nobody in those days knew or understood about that, any more than I did.

My life until diagnosis was an anarchy where autism ruled behind the scenes and nothing made sense because it was hidden. I was so busy struggling every day to understand what was happening, why, trying to keep my fears and anxiety and depression in check, and i went along putting out situational fire after fire. I did not have the tools of knowledge or the time for introspection.

Now retired and with much more time to spend on research, doing some soul and self thought searching and finally finding autism, I am anxious to share what I have learned and to attempt to share with other old folks the insights that set me free from all the years of self blame, misery, anxiety and desperation.

I was able to change the pattern because I could see how autism had worked in every corner and cranny, every dark and desolate place, every unforgiving and painful moment of my life.

It has been such a relief and such a freeing feeling to know and understand. I am not to blame for the way I was a spectacular failure most of my life. I am autistic and I did not have the tools or self understanding to make the adjustments I needed for a healthier and happier life.

Starting in January with this blog, I have tried to open the lid on the “toolbox” and to explain to myself as well as others how autism has affected me, how it works in others, and how I can have healing and better living now that I understand my autism.
I hope this blog has been useful and that it will help those new to autism at such a ripe old age to understand themselves and their history, their lives today, and to help improve their lives going forward with new understanding.
I salute you all as survivors, and encourage you to forgive yourself, take care of yourself, and to understand that it is not your fault, and you are definitely not alone.

What next? Now that I have my professional diagnosis, I can proceed with plans to reach out to other elders in my community, to raise the awareness of autism in the lost generations , particularly focusing on those who are of the “baby boom” generation. As elder autistics retire and need more support, I believe it is urgent to have understanding of their autism in order to provide safe and satisfactory conditions and to alleviate suffering and struggles whenever possible.
With self understanding we can become advocates for ourselves and others who are trapped in cycles of pain which they don’t understand and which might be helped with knowing about their own undiagnosed autism.

I will still write here about how autism can affect us and continue to try to explain the things I am learning. But I will focus locally on finding the 200 or more undiagnosed autistic people here in my own area. ( number based on population of people over age 20 in my county and city).
Feeling optimistic.

Autism sensory processing

VISUAL INPUT what do you see?

I knew years ago that visual input was upsetting to me. Long before I knew about my autism, I knew I could not handle moving images or images of violence, suffering, or anything emotionally significant.
Seeing those sorts of images, whether moving or still give me emotional reactions that stay with me to re-live the feelings they evoke repeatedly and randomly, never knowing when thoughts and memories of those images will haunt me and torment me.

There is nothing I can do in most cases to alleviate the horror of these visual images once I have seen them. I learned as a pre-teen to avoid the nightly news broadcasts. The war in VietNam was the focus of almost every broadcast, the bloodier the better.
Repeated images of the Kennedy assassination when that happened, standards for what visual images were allowed on TV , newspapers, magazines, etc changed rapidly in the 1960’s and anything gruesome or horrifying was usually the opening story. “if it bleeds it leads”.
Not only do I struggle to understand moving visuals and always have a processing “lag”, whether it is something on the screen or a photo or actually unfolding ‘in real life”, but I find I am filled with a rush of emotions in the graphic visual input which seems as if it has no place to go. I experience horror, fear, angst, all the intended emotions meant to be drawn out by these images and the experience is immediately and continually emotionally overwhelming. I am battered emotionally and continually when I allow myself to be subjected to such images, whether real life images or scripted fiction being enacted. I choose to avoid this experience whenever possible.

I can not sort and file the experiences and tell myself “it is over” “It is just a movie” or use other filters which most people use when they have visual input. Those filters for me have never existed.

Add a sensitivity to sounds of suffering ( screaming, crying, pleading, anguish and pain) I find many tv or movie/video experiences too painful to subject myself to willingly.

Even in day to day life, I have always struggled with visual demonstrations of “how to do” from teachers, medical explanation videos, employers visually demonstrating how they wanted the work done, etc etc etc.
Give me a booklet with line drawings and printed explanations to illustrate these things and I will understand.
It all happens too quickly for me to sort the steps and expectations, listen to instructions and see what is being done… “are there any questions now?”
I always annoy the presenters of these things. Yes, there are plenty of questions.

It is as though I don’t have a working filter or a thermostat for the emotions aroused by seeing such things and hearing them.

My first memory of this effect is when I was taken to see Disney’s original Fantasia and my screams of fear at the skeletons in the bald mountain scene and the trouble Mickey Mouse was getting himself into (NO Mickey, NO NO!!!) and simply being “shushed” because it might annoy others around me. I was about 4 years old. I have been able to protect myself from such distress since I became old enough to choose not to participate in activities that are likely to lead to such distress.

It is said that visual processing is a strength for most autistic folk and that being able to visualize is our greatest ‘gift”. Not for me, and maybe not for many of us. I can not visualize a thing!
Don’t let generalizations lead you to forget autism is experienced on a spectrum, and not one of us is the same.
Is my reading considered a form of visual processing? Perhaps, but it is at my pace and although I rely on seeing the words to read them, my “inner brain” speaks the words and I have always thought my reading experience was more sound oriented (the sound of the words in my head to myself) than visual.

Perhaps my inability to visualize in my head has much to do with the processing of visual things. I do not recognize people out of context, this includes in movies when there is a change of scene and wardrobe. (who is that guy? Oh, that’s the hero of the story?) I am repeatedly made fun of because I recognize none of the movie stars, tv heroes or other popular characters. ( OK, I just realized I do still recognize Mickey).
I do recognize voices after listening to them just a few times. I surprise my tv watching husband when I announce that the voice belongs to X actor or actress… I am usually right. Can’t recognize a face to save my soul, but give me a voice.

Sometimes I imagine myself in a nursing home at some point (one out of 3 people eventually spends at least a month in a care home before end of life) and can only be horrified thinking about the managed use of the common room several times a day , and me being forced to listen to dozens of people, a blaring music intercom and a TV turned up to accommodate those who are hard of hearing. If I am unfortunate enough to be unable to move myself, I could be plunked down somewhere facing a TV with horrible images, screaming and crying, in a room full of din and things I would never choose to see, people I would ordinarily hide from, and subjected repeatedly to this…. There are no ways to describe the resulting misery. Perhaps you can imagine for yourself.

Edited a few days later to add more content.
Visual processing issues can also cause much distress in everyday living. One often reported distressor is light that is too bright, light that flickers, light that is the wrong color or too direct, too focused, too diffused. Think of all the ways we see light in our day. I get motion sick due to the rapid changes in light/flicker effect/ inability to process moving images. I can get sick in a car, or I will get sick watching any rapidly moving images on TV, Movies, Videos, and video games. I always do better in a vehicle when I am driving, perhaps because I can correct the motion of the vehicle and affect it in a direct way, or because I am more in tune with the motions of braking, turning, stopping, slowing down or speeding up and can prepare myself for such things and correct for them. Wearing very dark wrap around sunglasses seems to help keep shadow flickers from affecting particularly my peripheral vision, and I am sick a lot less now that I finally learned that trick.

Visual struggles and issues with bright light, colors, patterns, and shadows can cause much distress for those unwillingly subjected to certain conditions.
In many cases, those of us who are prone to seizures (about 30 to 60 percent of autistic people, depending on who is reporting the issue) will react to flicker and rapidly changing visual input by seizing.
Reports of meltdowns caused by the flicker of a fan throwing shadows repeatedly across a room, motion observed through a window and resulting reflected light changes, etc. are frequent. The affected person might not even recognize what is distressing them.
If you experience distress when you are in certain situations you might be able to seek out causes when you recognize problems with light and visual processing. Many autistic people wear sunglasses or colored lenses which seem to help change how we process visual input.

I am losing track of the number

of attempts to find somebody who is competent and willing to provide a diagnosis.

Late last week ( Friday). I contacted the autism department of our state’s largest medical teaching school. The form required to be filled online included a space for explanation of my problem and what it was I wanted of the university.

The online form I filled out was set up in such a way that I could ask referral to psychology, neurology, or autism departments. It also gave an option for “I don’t know” ( which I want). I explained that I was elderly and was seeking autism diagnosis. The form asked name, email, and phone number and asked how I would like to be contacted.
I said that I would provide the mandatory phone number but because of processing and social issues my preferred method of contact was through email.

I enclosed a link to this blog which explains exactly why I want a diagnosis and how hard it has been to find somebody competent to do the necessary screening.
Monday afternoon we came home to a telephone message spoken rapidly by a soft voiced woman with some sort of speech impediment or speaking through a distorting phone speaker.. I had to listen to the message several times to understand what she said. ” She could answer all my questions, just call this number!”

I called yesterday morning to be confronted with an automated phone menu. This button for this department, this button to choose who to leave a message for, this button to call the operator… The caller had not left her full name, her title, or her extension number. I hung up.

After noon yesterday (Tuesday) I got a phone call from the same woman, a little easier to understand than her message if I listened very closely. I asked one or two very specific questions and was put on hold both times and made to listen to tinny wavery music of one finger plucking a piano very very slowly, to the point that i dreaded hearing the next note… I waited about 3 minutes the first time. No, there was no availability for such diagnostics there, but I could be referred.
Did they have anybody with experience in diagnosing the elderly for autism?
Any experience diagnosing or working with women? (I asked)
OH I was paying cash? My insurance was not acceptable (in system) for them but it would be around $2000. Just a moment please. (their focus seemed to be on getting payment rather than helping me get the services I needed, this is a rule rather than an anomaly, I am finding)

Back on hold. I hung up after 5 minutes. The plinky- tinny piano notes drove me to higher anxiety. Why in the world would they use that sort of music when putting somebody on hold for a psych department???? aaaugh!
She called back. It would be $3600 to get an assessment there, did I want to go ahead? No answer about my questions regarding experience, no answers regarding any of my own questions. No, never mind. “sorry about that”.

I am very frustrated ” sorry about that”
” You could try getting a referral from your doctor” ( Dr did not know of anybody nor did the huge medical association she works for have any Dr available for this).
“you could call your insurance company and they could recommend somebody” I had done this long ago and there was nobody in their system.
I said never mind, thanks, and just hung up the phone.
Another exercise in how to find somebody to help with diagnostic testing for autism. Or how not to. So frustrating and depressing. My autistic perseveration is coming in handy, I am not ready to give up yet.

I search the internet for hours, many days of the week, trying to find new (to me) information or perspectives on autism.
I recently came across a pdf. presentation from 2012 regarding the ageing autistic population and how the USA will be needing to prepare for us, about how to recognize us, and about those of the earlier generations who had no access to diagnosis as children or even young adults. I plan to contact the author of this pdf. It has almost everything which I want to cover and points I want to make in presentations. Perhaps if she is willing to spend a bit of time with me in discussion she will also have a name or two to refer me to for possible diagnosis. The search goes on. I grow tired. Time for a bit of self care, rest, and doing something completely different for a while.

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.