Details

Its ALL about the details!

Recent studies have shown the main differences in patterns of thinking between those who are “neurotypical” and those who are autistic is a matter of which comes first, the “big picture” or the details.
Neurotypical people ( NT) tend to notice and take hold of the general idea of any concept and then fill in details “as they go”. Generalization first, specifics to follow.


Autistic thinking patterns generally are to gather details as if they were clues and assemble them to create a complete understanding of the concept or idea.

Before we proceed we want to know as much as we can about it.

How does this work in every day living and communication?

I struggled with general concepts as a child. Vague non specific directions gave me fits!

Clean your room! (autistic thinking asks, ” how clean must I get it, clear it of clutter only? Sort the clutter or just get it out of sight in a closet or a drawer? Strip the sheets and take down the curtains, wash the walls? Wash the windows? Vacuum, dust, polish??? “)

Do the laundry! ( autistic thinking asks, ” just my laundry or the whole family’s? Just start a load or spend the day doing all of the stuff in the piles, drying, folding putting it away? Sort by color? Sort by fabric? Sort by family member? Can I put this set of dad’s work overalls in with mom’s best tablecloth?” )

Go get dressed! ( autistic thinking asks, ” play clothes, work clothes, dress up clothes?, are we going somewhere? What shoes to wear? Why can’t I find my favorite socks? I can put on my play jeans under my dress so I can be ready for anything! ” )

Walk the dog! ( autistic thinking asks “where should I take him, back yard, around the block, to the park? Should I use the long leash or the short one? How long should I walk him? Do I need my hat, coat and gloves? Should I bring baggies and his bottle of water and his dish?”)

There is a lack of understanding in the NT mind, that we NEED those details. It is not enough to state intent, it needs to come with specific information. Especially as a child with little experience in the world, statement of intent does not tell us what the expectations for each act we are told to perform are, nor does it explain how to do these things!

State intent, then be as specific as possible about expectations and give as much information as possible to any directions. This method still works best for me today at 68 years old.
As a young child, had to be taught in small and very specific steps to know how to clean each area of the house, how to do the laundry,how to iron each piece of clothing or linen, how to wash the dishes, what was expected of me when told to clean my room, how to empty waste baskets, take out the trash, How to use the vacuum, each specific chore had to be explained in detail.

Things that were evident to my NT siblings through observation were not obvious to me. Knowing today that I have very little neurological ability to process moving visual input, this makes more sense.

This pattern has continued all my life. If my husband says he wants to go to shopping, I need to know where we will go, what time we will leave, what are we buying?
If I must travel, I make lists of things to bring and I look up my destination on the map, view it on satellite programs, write down directions on how to get there, plan time of departure and arrival, think about where I will stop for rests, gas, and any other stops I might want to make.

Going to a meeting or program in town involves the same planning, how do I dress, what do I bring, how long will I be there, How do I find the place (mapping and perhaps even a day before recon if I am afraid i won’t find the place in time for the planned activity) Who will be there? How many are expected? Will there be food? What is the schedule for the program? Where will I park? These things may be intuitive to some, but they are conscious questions that need answers for me to be comfortable to proceed.

If I plan a new project or want to learn a new skill, i will seek information ahead of time on the internet or in books, and read about “how to do it”. I can not watch videos or listen to podcasts to get the information. Once I learn all I can about the skills needed and the correct ways to proceed, I am able to carry out most of these projects with little outside help. But if somebody just told me to simply ‘do it’, I would most likely not be able to proceed. I have to get all the details, line them up, and then I feel confident I understand.

I am often chided by others for not being able to “go with the flow”. I am aware that I irritate others by asking all of the questions I need to know to assemble a complete idea of what will happen in my head. I need all of those details in order to understand.

My husband amazes me. He could watch anybody do something, then do it himself.

I know he is NT because very little has to be explained to him. He sees what has to happen and is able to complete the project using things he has learned by watching and listening.

One of the best things you can do to improve communication and understanding with an autistic person is to state intent, then explain in detail, using as much detail as possible. Do this in every day activities, no matter how small they seem to you. It might be annoying to you to have to do this, know I am not trying to be a pain, but that I need to ask questions in order to understand. It might take extra effort on your part, but you will usually gain willing cooperation if I understand the “big picture” in any scenario.

This is especially true if I am in a medical setting, or in any new place where I am expected to comply or cooperate with issues that are new or require some form of participation on my behalf. Please state intent and explain what will happen in as much detail as possible.


Answering the questions of ” What, when, why, who, where, how?” makes my world and my place in it easier to understand, to negotiate successfully, and to perform satisfactorily.


Newly diagnosed Autistic Adults

Comments on forum are a strong argument for adult diagnosis of autism.

I was so deeply moved just moments ago.
I have a routine of checking in with each of the four on line autism forums I attend every morning.
One person had written that she was newly diagnosed and that she wondered what other people’s reactions to diagnosis had been.

People began to check in and tell their stories.
Some said they were initially shocked because they had no idea.
Others said they felt deep loss for things that might have been.
Some said they felt angry that they had spent their whole lives not knowing why they were different.
Some said they refused to accept diagnosis and fought it to begin with, but eventually became convinced the diagnosis was correct, and accepted it.

Every person (and more checking in as the morning unfolds – it is 5:30 AM as I type this) said that they felt relief because they finally understood they were not bad, wrong, morally inferior, weak willed, crazy, broken, hateful, spiteful, mean, cold, or any of the other labels they were given all the years they did not know and understand about their autism. Diagnosis explained so much!

Each person said it was a relief to have the answers to why life had seemed so difficult for them in so many ways.

Each person said it made so much difference in how they felt about themselves, how they saw their past struggles, and how diagnosis helped them make a new life with fewer struggles since knowing about their autism.

That parallels my own experience and speaks volumes about the tremendous need for finding lost autistic adults and giving them the tools they need to live better lives through gaining and understanding their own diagnosis.

I learned something from an article on autism and ageing the other day.
I had not thought of it before in this way.
This requires the assumption that autism has always been with us, rather than thinking it is an epidemic or sudden plague that appeared out of the blue in the middle of last century when it was first suspected and began to be explored.
Stick with me here.
If there are approximately 2 percent of every generation who are autistic, and autism has been missed as a diagnosis in adults ( childhood being measured from birth to the age limit of 20 years old), and there are currently ( as stated in the statistics I read) 5,500 autistic (diagnosed) people turning 20 years old every year here in the USA:
think about the 5,500 autistic adults in every generation each year who missed diagnosis simply because it was not done before 1980, and until very recently diagnosis was very rare.
People of the baby boom generation will have had more autistic people because there were more people born in that generation…
Half the baby boom population has retired, the other half is in progress of ‘coming of retirement age’. Using those same statistics, can we generalize that there are approximately 5,500 undiagnosed adults with autism reaching retirement age each year? How many are in the ‘over 65’ age category?

There are approximately 275,000 (between the age of 20 and 70) undiagnosed autistic adults in the USA alone. Of course this is only an estimate. Nobody knows, because that population is currently hidden. Actual statistics( I have looked at so many studies) estimate autism in all populations occurs at a rate of between 1 and 5 percent. I have assumed a conservative 2 percent for this discussion.

The relief of suffering in knowing yourself to be diagnosed with autism could reach and help so many people. We need professionals to diagnose, study, treat, provide therapies, care for, and otherwise support this group.

I hope that together we can raise awareness of this need and that we will soon see services provided for these truly lost and struggling generations.

OK, this is corny, but you will understand.

“I once was lost but now I am found”.
It has made all the difference to me. I hope others can be ‘found’ too.

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.