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.

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.

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!

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.

More about the diagnosis of autism.

The “Big 3” in the diagnosis of autism are behavioral things. All are included in what can be called “social struggles”. This is the biggest feature of autism which causes us difficulty.

1 “Social deficits/ emotional response” is abnormal. There will usually be difficulty in understanding the way social ‘give and take’ in conversations works. The autistic person might give mini lectures, or answer other’s questions with simple yes or no instead of seeking to promote back and forth social conversation. We may not be interested in what another is saying, thinks, or is doing… and fail to interact, when common social standards would expect that “give and take” conversation to take place.

We may not be aware of other’s attempts to interact with us or we may avoid those attempts, or we may not recognize signs that others wish to avoid us. We may not react with emotional responses where it would be more common or even expected to do so. ( things like congratulating somebody who announced good news, or saying “I’m sorry” to somebody who announces sad or bad news)

2. ” Deficits in non verbal communication” We may not express thoughts, ideas, emotions through words or actions. We may not recognize when others express these things in words or behavior. It is as though we can not “read” the person’s body language or their facial expressions. We miss a lot of social cues… and we fail to give the cues others expect of us. One of the things that is often commented on as a symptom is that eye contact seems to be uncomfortable for many autistic people, and many, especially when young, will tend to avoid making eye contact, or if eye contact is made, it is not “held”. It also seems that many adults may have been extremely uncomfortable with eye contact as children, but have learned to use it to some extent as we age.

It appears to be a common misconception that all autistic folk avoid eye contact, and that this will not change. Offers to shake hands or motions inviting one to take a seat may not be noticed, and likewise may not be used in interactions with others. etc. It is my own belief that most of these social body language cues can be learned and performed. Some with autism may find it impossible to very difficult, as we all are individuals.

3. ” Does not adjust behavior to fit circumstances”. Unless we are taught otherwise, we approach the world and everything in it on one level. We many times may not pick up on the fact that we need to be quieter in the library than at the gym. We may not behave differently at a funeral than we do at a birthday party. Somehow we seem to have difficulty picking up on the subtle differences in situations. I believe this is simply not intuitive on the part of many autistic people, but can certainly be learned.

We may prefer to be alone and be completely uninterested in in what others are doing or thinking. We may have difficulty in many cases playing games or doing things that involve anything “pretend”.

Many older people have learned how to overcome these deficits through past experience and sometimes therapy. We learn how to “mask” the natural traits and to ‘work around’ them to some extent, but I believe it may be very difficult for us to be so intensively alert to see and act on social cues.. what is perceived and assimilated and acted on by those without autism comes to us through focused effort and vigilance. Social interactions can be very difficult and stressful to many of us, though we might be good at performing the expected social basics. What might be a simple trip to the store or doctor office might be completely exhausting and stressful to an autistic person.