Asking for a referral, social anxiety, why I prefer my own company.

I am planning to make another attempt at “official diagnosis”

Due to problems with communication and my GP’s short, abrupt, impatient treatment of my questions, and incidents of her scornfully yelling at me in the past, I had avoided the idea of asking for a referral, or trying to explain to her why I believe I am autistic.
I had searched both my insurance network and the network of health care providers she works for, and none of them had any specialists in autism, not even for children.

I considered asking for a referral from the GP an unnecessary, dead end approach to diagnosis. I did not bother asking her, because I knew from my research on Doctors available in her extensive statewide medical system that none were providers with any interest in autism.

Now I have found a Hospital in another state, 9 hours drive away, which has a department devoted exclusively to diagnosis and care of autistic adults. The doctor in charge of the clinic is an author whose books I have read. It seems she does indeed understand autism in adults. In order to see her, or to be considered for diagnostic testing and interviews, I must have a referral from another doctor.

I dread going for my yearly scolding/wellness check so am already beginning to fret.

A thousand “what if” questions run through my head. I feel as if I have to be prepared for any eventuality and of course I am not able to do that. Feeling incompetent to deal with a given situation is a BIG trigger for anxiety in me.

Most social situations (dealing with any other humans and trying to interact with them on any level is something I consider a social situation) cause great anxiety because I fear I am not competent to deal with whatever may happen. Let me re-phrase that, I know I am not competent to deal with most situations that may arise. Life long experience has taught me that. I am much better at age 67 than I was in my first 30 years, but by comparison with most NT persons, I still find I fail quite frequently.

Most anxiety for me is because I feel that I will not be able to deal with whatever situation I am facing in a competent manner, without making a fool of myself or annoying or angering somebody.
So many life experiences in the past have proved these fears are founded in truth.
As an older adult I no longer fear physical harm from most situations, but I dread anger, argument, aggression, criticism, scorn and rejection. I am simply afraid to subject myself to situations where these dynamics come into play, leaving me emotionally hurt and helpless to defend myself.
With life experiences of this sort of thing happening in interactions with others, is it any wonder I am anxious?

It is not that I don’t want to interact with other people, it is more that I seem unable to do so without causing anger, scorn, or other negative treatment from others.
I prefer not to ‘socialize’ – that is interact with others regardless of whether it is in an informal or a service or professional setting, because the negative experience has been the most common in my life, and why indeed would I seek that out?

BUT: Is that not what the goal of seeking diagnosis is all about?
I wish to interact with persons to tell them about autism in elderly people. One by one I am facing my fears, the message is important.
I hope to help others understand how autism has affected their own lives, and mean time I continue to try to find a way to overcome the way it affects me as well.

Autism as a GIFT?

I will have to be convinced of that!

There is division among autistic folk and much discussion currently about autism’s gifts. Some say autism is a gift! I see this as backlash against stigma and as part of the “think positive thoughts” school of ideas. I understand it is a way to celebrate diversity and to encourage sensitivity and to open minds.

I also view this “you are not disabled, you are gifted” as a form of invalidation and a way of glossing over the struggles that the vast majority of autistic people must deal with. Those of us fortunate enough to be able to argue these concepts amongst ourselves might be losing track of so many of our autistic brothers and sisters struggling in care facilities, institutions, and needing major supports in every day living.

I deeply believe that every life has intrinsic value of its own, regardless of ability or disability.

I believe that it is important to recognize talent and giftedness, all the forms of “otherness” that life offers us as individual human beings, but I believe in being honest, too.
Many of us do not have obvious or “useful to society” gifts.
Are we of less value?

Many of us struggle and struggle deeply, and this also needs to be respected and acknowledged.

I ( or any human) am not my disability, anybody may have deep struggles.
Many have extremely difficult struggles, appalling and daunting struggles in simply surviving another day, any and all of which are not recognized, but swept under that metaphorical rug when I(or any human) am told my struggles are actually a gift.

If I (or any human) am less able to do certain tasks, think certain ways, behave according to certain standards, do I have less value than those who have the gift of having those abilities?

Does an individual who has no special skills or lacks ability to use certain parts of the brain and/or body have less value? I think not.

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.

Roadblock, lesson learned

The time came to pack for the appointment for my assessment.
I knew that I liked this doctor and had confidence in his knowledge and experience, and in my ability to communicate effectively with him. I have been anxious for weeks now, hoping I had finally found a Dr who knew and understood autism.
The first meeting he indicated that he thought I had autistic characteristics but he wanted to make sure some of them had not been caused by early childhood trauma or other conditions.

He was interested in interviewing my spouse for clues to my earlier ‘self’ since both my parents are long gone and my siblings are not available.
We filled out forms without discussing them, to be compared and discussed together with the doctor.

We set out the night before to stay at a motel nearby rather than travel 4 hours for the 9AM appointment that morning.
Restless night in a strange place. Anxiety rising.

We presented ourselves at the reception desk next morning , saying we had an appointment for 9AM with DR_________ .
The receptionist looked stunned.
“DR ________? Surely not, he has not been here for weeks!”

Our turn to be stunned. It turns out that the Dr had surgery shortly after my April appointment and had not recovered.

The person who had cancelled his other appointments missed the entry for mine, perhaps because there were empty pages in his appointment book between early April when I had been there, and July. ???

I am saddened to think of his family and think of all the good he did for so many people, and I wish them peace and comfort. Of course it was not spoken directly, but I got the impression they don’t expect him to recover.
I am upset for them and also for myself. I am disappointed and still adjusting to the fact that I will need to look once more for a Doctor who is familiar with adult autism and diagnosing old ladies. A rare bird indeed.

The lesson learned (and it is obvious in hindsight) is to call ahead and confirm any appointment which is out of town before heading to the meeting.

Autism diagnosis for an Old Lady

My next attempt at getting a professional diagnosis is less than a week away.

I find myself very nervous, on edge, near tears sometime.

Summer is always busy and I have a lot to do. Maybe being busy is good because it keeps me from fretting, something I am very (very) good at!

I trust this doctor, and he has many years experience with autistic people. My husband will come with this time. We have been given a “homework” sheet to fill out and have been cautioned not to discuss it with each other. I think the Dr wants to compare our observations. Dr will also spend time interviewing my spouse. This was something that I was told would take place during my first “assessement” but which never happened… anxious about that too.

Almost everything I want to do from here onward depends on a positive diagnosis, and I have no idea what will happen if he gives me another diagnosis (schizoid has been suggested, but I disbelieve that).

Everything I have read about autism seems to fit my childhood experiences, my personal life experiences, and my work experiences.

I am no stranger to other diagnoses as there are others with those in our family… and our daughter experienced multiple diagnoses over the years until they ‘got it right’.

I do intensive research on any subject which interests me, and neurological brain disorders (mental illness and other associated conditions) has been one of my areas of study.

If this Dr says I am not autistic I will be devastated emotionally because I already identify as autistic and I know it will upset my self image… which already happened with the first “assessment”.

I am so concerned that many older adults are being missed, and misdiagnosed as having other mental/neurological conditions. Particularly women, who are likely to be diagnosed as one in 143 cases, as opposed to one in about 50 in males.

Women simply show our autism differently, or are more adept at hiding our struggles.

So many doctors here in the USA have no understanding of autism, even neurologists and psychologists . I hope by gaining credibility with a professional diagnosis that I can further interest in late diagnosis of adults.

The ironic thing to me is that so many of the professionals we are depending on for diagnosis and self understanding are mostly not trained to understand us and give those very diagnoses.

Autism Diagnosed late in life

When I first started writing here, I could only find a small handful of elderly

autistic adults who were writing… elderly being subjective… there were several authors

in their mid 40’s, one or two in their early 50’s, and none over 60.

I have been giving consideration to whether having self diagnosed (still chasing ‘official’ diagnosis, one of the subjects of this blog) my learning of my autism has changed anything? Has knowing about my autism changed a thing?

Many people have asked, what good does it do, to have a diagnosis at this age?

I have to admit that it doesn’t change my disabilities or handicaps, not one bit.

I still struggle with all the sensory processing issues in the same old way.

I still suffer emotional distress, still struggle to understand context, intent, and other issues involved in any social interaction.

What has it changed, this knowing after all these years that i am autistic?

It has changed my outlook and my attitude. I no longer see myself as hopelessly inept.
It has allowed me to forgive myself for all of my weaknesses.

I now know my failures are a side effect of my sensory struggles, and not a moral weakness or a lack of inner strength, a weakness of character.

I am beginning to understand my strengths and the way my own mind works.

I am beginning to understand so many things that I misunderstood because of my not knowing about my autism and my lack of insights in so many parts of my early life due to a complex mix of family and social issues during the time I grew up.

I have been reading and learning for almost 2 years now, intently and for hours almost every day.

I finally am beginning to understand how difficult my life is and would have been under any circumstances due to the autism. I knew it was difficult, but now I know why, and I can congratulate myself on coming so far with handicaps nobody understood, rather than punishing myself for not measuring up in so many ways. That alone has been worth more than anything else! My self image is more in perspective with reality.

My self worth is now visible. I had never valued my existence or seen myself as other than undesirable, unworthy, a failure, a burden, an affliction to others. Autism with its rigid perceptions and inflexible rules had me caught in believing things I had been taught about myself from an early age without being able to see beyond those early ideas.

Knowing about my autism, that I am not to blame for all of the things that troubled me and troubled my family and associates, and knowing that others did not know either, answers almost every “why” I suffered with for so many years.

It has allowed me to move on to learn about and understand more about myself than I had ever understood before.


The answer of knowing it is autism is an explanation, not an excuse.

I am responsible for my own behavior, beliefs, morals, values, actions and reactions. I have made some terrible mistakes, terrible choices, in my past. I will continue to have failures in the future.
If I have successes it will be because my knowing I am autistic has not changed my disabilities, it has actually sharpened my understanding of these, but it has also allowed me to understand myself and the reasons for the results of so many issues of the past.

Diagnosis of autism will help me understand better ways to go about dealing with things in the present and in the future. I have new insights from a totally new perspective. I like this side of autism much better than the place I had been for my first 65 years. What a relief to finally know and understand!


I hope more autistic folk of later years ( old people like me!) can find answers to the questions of their pasts and have the relief of knowing that autism explains so much.

In the near future I hope to put together a short description of autism in older adults to be distributed to medical facilities, public agencies of all sorts- nursing homes, senior center,homeless shelters, library, etc. to help people consider autism as a diagnosis in struggling populations. Still working toward an official diagnosis, anxious to get to work.

Autistic inflexibility

Why the rigidity of thinking? I cling to the rules and ideas of which concepts and principles I think I have grasped as a drowning person would cling to a life preserver.

I am afraid to give up those ideas because I have no obvious or evident, or known alternatives and I would be lost without my guidelines in place as a blind person would be lost if dropped into the middle of a forest.

Rules provided guideposts which gave me (I thought) the ability to see how to navigate the complex and scary processes of my world which made little sense without them.

I am coming to realize how my autistic inflexibility has influenced all my life experiences and my perceptions, etc.

I wrote in this blog a while back regarding a phrase in the Temple/ Barron book on Autism.

There was a comment about a child needing explanations about the nature of mistakes, forgiveness, learning, and recognizing that all mistakes are not mortal, that errors are made all the time and adjustments can be performed, that the world will go on with very little harm most of the time being done on a permanent basis. I did not know or understand this until I was in my 30’s!
I want to address this because I made assumptions in growing up which were simply not true, learned the things I thought were the ‘rules’ without realizing that these change with every situation and that our responses to any situation can be varied.
I have always told people that I need explanations for many things which might seem obvious to others. This is something that dawned on me around age 30, although I never suspected I had different neurological processing and blamed it on being stupid about things, which was the answer others had provided for me all my life. Now I know it was / is the autism.

Finding out about Autism has brought new understanding. Things I had to learn by being taught/getting therapy that were probably obvious to others from a much younger age:

1 Mistakes are common and forgivable. You are not bad if you make a mistake.

2 Rules of every day life change in different situations. A rule is not always a rule in every situation.

3 There are many ways to respond to people’s requests of you. You have a choice of many options.

4 You are not responsible for making other people like you. People can dislike you and that is OK, it does not mean that you are less worthy or less human, or of less value than they are.

5 If people are not your friends, they are not necessarily your enemies. They are mostly neutral. That is OK too.

6 You do not have to try to make people like you. You do not have to be socially successful, look a certain way in dress, demeanor, bodily appearance, or have to have a certain job or have a certain way of life to be happy or content.

7 It is OK to say no, you do not have to have the good will of anybody to interact with them.

Some of those points are inter- related, all of them stand alone, all of them were quite difficult for me to grasp because of my rigid autistic brain and the lack of outside guidance to give insights. It was my counselor who began to explain these things to me 37 years ago. I got counseling at age 30 to learn things that “average” or neurotypical children probably have learned by age 10 to 12.
I had no idea of my autism back then, but was able to learn these things with the therapist’s explanations, and it changed my life.

If you suspect you might be autistic, or believe you might need explanations where you struggle in your life, please do not hesitate to find a good counselor to help you with ‘every day’ operations.
My understanding of my world and the ways I could act and interact with others in making healthier choices and choosing healthier ways to live has improved and life has got so much better with practice.

I still have many struggles for understanding, still have struggles to be self assertive instead of appeasing and submissive as a first choice (that was the behavior pattern I had been taught as a child and young adult).

Going to counseling with a good therapist who was able to teach me healthier ways of communication and decision making was the single most important and helpful thing I ever did for myself.
If you struggle with deep and constant emotional pain and or feel rage and loads of frustration, there might be new ways to do things that could help ease that burden. Please reach out and ask somebody to help you. You don’t have to do this alone!

Many of us are stuck in ruts of learned behavior which can be tying us to unhealthy lives.

Learning new ways to respond, learning about choices we didn’t know or understand can be life changing.

For me it was truly the difference between life and death. I would have been dead in a gutter somewhere years ago if I had not got counseling and better understanding of my choices and my ideas of the rules of life in general.

Check it out!