Diagnosis adult autism

elderly autistic version of DSM V for autism diagnosis

This will be longer than usual! I have spent almost 2 years studying and researching scientific papers, books, blogs, and participating in multiple autism (+ Aspergers) forums. I have spent hours almost daily, and have communicated online with hundreds of other autistic people and Neurotypical people as well about autism. I have tried to consolidate what I have learned here in this blog in hope that it will help other older adults with autism, or those who suspect they may have autism.
My intent is to provide “one stop shopping” for information useful to older autistic people (and those who interact with them!).

I now have an appointment to see about finally getting an “official” medical diagnosis.

With that diagnosis I progress to a new phase in my intentions.
I want to present the idea of finding hidden autism in ageing adults to those who work with the senior population. For example: Senior centers, nursing homes, staff in medical facilities, rescue and police/fire workers, hospitals, offices which provide aid to the elderly, etc etc.

I have been working on accumulating information about diagnosing the elderly autistic and learning how we differ from youngsters ( who are the population doctors graduating from school today are trained to identify).

Lifetimes of adapting oneself and masking have hidden many of the traits or behaviors professionals are trained to look at as clues to autism. Eye contact, hand flapping and toe walking which is sought in children may have been replaced by other self comforting behaviors deemed more socially acceptable. We may drink or self medicate with drugs or smoking, we may hide self harm or our other comfort rituals behind closed doors, having learned to avoid being scolded, mocked, punished, corrected, because of them. Current popularity of ABA shows most of society believes that autistic people can be trained to substitute one behavior for another. It is reasonable to believe that after a lifetime of experience we would not show the same autistic characteristics in the same way we did at 3, 10, 20 or even 40 or 50. We will be harder to spot because we have had a lifetime of experience learning “what not to do”.



I used DSM V as a guide and gathered as much information as possible about the descriptions included and how they might show themselves in older folks.

Next, I used DSM V as an outline and began to fill descriptions of these behaviors and traits as ways they could be applied to older adults. I am sure there must be thousands of other adaptive behaviors and signs of our struggles. We are only beginning to learn about how to find and to diagnose the elderly with autism.

When I had my outline filled in, I went to two large on line internet forums (over 1 thousand members in each) and asked for help refining the descriptions. I asked if the members saw themselves in the descriptions, if they could add to the descriptions, and asked for all input or constructive criticisms. I got great feedback!
The process was by no means scientific and my use of forums was because I am best at written words. Other results may be found by personal interviews, by using formal test form types of booklets , standard neurological testing, etc.

I suspect that the people who responded so avidly and so kindly are also like me… many of the most active participants on these forums were the ones who responded with often lengthy descriptions and detailed observations of what I had missed and what they thought I had got right.
In total, I got hundreds of responses from 88 autistic people, most of whom were women. There were 5 men who commented. Ages ranged from lower 30’s to mid 70’s with most respondents in the middle 40’s to 50’s in age. Many people said that they thought most of the criteria I described applied to them. Some of course took exception to parts of the descriptions. We are all so varied in our autistic presentation and our strengths and weaknesses. I expect the description here will be a bit skewed because it relied on input from mostly older women and mostly those of us who tend to be “wordy” in print.
I suspect many reading it will want to add information and express opinions and I urge you to email me so we can discuss details thoroughly. When I use these guidelines to discuss autism in the elderly un-diagnosed population, I want to get it right!

Old Lady’s Diagnostic guide for Elderly Autistic Adults.

Section A: Social struggles:
1 May be estranged from family members
2 Reports having been bullied throughout life in many varied situations
3 Has held many jobs, for which they may have been grossly overqualified in education and skills or may not have a work history at all

4 Reports having had multiple partners and or failed marriages, or may not have had any at all.

5 reports having been abused ( this seems to be highly common for us as children and as domestic partners) or may have a record of having been abusive (sometimes both)

6 reports a sense of “otherness”, knowing one is different but not understanding how or why this is so.

Section B: Communication deficits:
1 lack of social boundaries. Talks over or interrupts others, stands too close, talks on and on. May make inappropriate comments or ask inappropriate questions.

2 Difficulty using body language or reading and understanding it in others.

3 Has difficulty making conversation, or keeping a conversation going . May not see the use of social conversation, and may not be interested in doing so.
4 May “freeze up” intermittently, depending on company, circumstances, or emotions or may not speak at all. May have speech impediments or echolalia.
5 reports that they make people angry but do not understand why.
6. Reports that they do not understand others’ motivations, intentions, or what they are thinking.
7 may have difficulty understanding one’s own emotions and have trouble expressing them. ( very common)


Section C : Rigid thinking and repetitive behavior patterns

1 Has fixed routines in daily living arrangements. Examples would be set times for meals and activities, set days or certain rituals surrounding certain activities. ( rules for cleaning house, doing laundry, care of car or lawn, etc)

2 Resists changes, especially if sudden. Is alarmed or upset by surprises.

3 Inflexible ideas or thoughts or beliefs.

4 Has especially intense interests and will follow these avidly an in unusually deep detail. May show no interest in things others try to discuss or do.


Section D : Sensory Struggles:

  1. May experience any of the senses intensely in predictable ways, or may be hyper sensitive to sensory stimulation intermittently, or be hypo sensitive in similar ways (continually or intermittently).
    2 May experience sensory meltdowns and become unable to deal with the intense distress that sensory overload causes.
    3 May report unusual sensory experiences.. tasting colors, seeing music, having vivid abilities to visualize images.
    4 Aversion to touch or other distressing stimuli (loud noises, flashing lights, uncomfortable clothing or strong tastes of foods for example) and behavior to avoid experiencing this. Ask how they react to hugs or handshakes, if they like the noise and activity of crowded malls, what foods or music they dislike, etc.
    5 May have odd clothing due to issues with comfort, also may have problems with bodily cleanliness due to sensory issues.
    Note: struggles with sensory difficulties can cause trouble in social situations, making it very difficult for persons to interact in ways that are considered usual, socially acceptable, or “normal”. This will reflect back or tie into to the social struggles and communication problems already discussed.

    Notes and comments:
    Not every person will have every trait described here. Many will have only a few. Although Autism is based in neurological differences, it mostly shows itself through behavioral problems. Social struggles and communication difficulties are the major hallmarks of autism in the diagnostic process. Without these struggles, the individual is most likely not autistic and one must look elsewhere for the cause of their traits. I want to mention that many autistic people struggle with other neurological problems.. executive dysfunction, dyspraxia, dyslexia, digestive trouble, epilepsy, an extensive list – but these are not necessarily diagnostic of autism. One could have any or all of these things and still not be diagnosed as autistic.

    So that’s it. I have no doubt left out things I could have added, or added things I could have left out. I will continue to refine and enhance, attempt to be even more brief and precise in my descriptions as I go. This is the first version of a work in progress. Now it is time for me to do some self care and take a break. Thanks for taking the time to read and understand!





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.

This obsession with eye contact

Eye contact avoidance issues

DSM V criteria for autism fills about 3 pages.
Among the first criteria is a list of possible behaviors which can occur under the heading of social interactions and abnormal social communication in body language. Along with several examples, poor eye contact is mentioned.
Poor eye contact was indeed listed as a symptom of autism in Kanner and Asperger’s original writings.
It seems that many diagnosing autism still think that people who can make eye contact can not possibly be autistic, regardless of age or experience.

I hear of others and of myself, ” she/he/they can’t be autistic, she/he/they make eye contact”.
Today’s autistic Children in ABA and other therapies are being forced to learn to make eye contact.
Once they have learned, are they cured of autism ? (using the same standard applied to me when people talk about my own autism- I can and do make eye contact when I choose to).
There seems to be a load of confusion on the issue of eye contact and autistic traits.

I would like to point out that a person who is autistic will remain autistic all their life. Neurological wiring does not change.

However (HOWEVER!!) many autistic people can and often do learn how to cover up or blend in so that our obvious traits are changed or hidden.

Hand flapping or hopping when chastised frequently, can be turned to hugging oneself, holding one’s hands in front or behind of one’s self or keeping hands hidden in pockets or rolled up in the hem of a shirt. (ask me how I know, I dare you!).
There are thousands of examples of one natural behavior being substituted for another, being perhaps less natural but more socially acceptable. This, of course is true for all people, not just autistic people. Learning social rules takes place for most of us. Some of us work much harder in the learning.

I want to emphasize that autistic behaviors themselves are not fixed, but just as mutable and adaptable in many cases as those of neurotypical/average/ non autistic people.

Refer to the term ‘masking’ as related to autism and read long and hard.

By the time one reaches adulthood, an autistic person may have traded defensive and self comforting behaviors and substituted others in many ways. Maybe we have even substituted new behaviors for other learned behaviors. As a 67 year old woman, I do not have many of the habits and traits that I had as a child. I have learned to substitute or hide those behaviors which brought down disapproval and punishment or ridicule. Because I have learned to perform social rituals does not make me less autistic, I just got better at performing them.
I will add that I was not able to observe and learn these things for the most part, but that I had to be told, I had to be taught, to be made so uncomfortable in my old ways that I was motivated to change them.
It is part of my memory to be able to recall where and when, and how I learned most of the things I know.

I distinctly remember being taught many rules of behavior for interacting with others. This spans from early childhood through my first job, onward and continues to today. I only wish that I had somebody in the early days to explain these things to me. It could have helped some of the struggles so much!

It has been a long, hard, confusing, frustrating, stressful and anxiety filled journey to come to today’s self understanding. People who are diagnosed when still quite young will have opportunities and information which eluded me. Part of me is regretful of my own lost opportunities, part of me is very glad that things will not continue “as they have been”.

My recent awareness of my own autism has ‘speeded up’ my understanding of the necessity for learning social rules and I have worked very hard in the past year and a half to learn more.
Now that I am aware of my deficiencies, I can go about seeking remedies.

I remember the terror and anxiety I felt at forcing myself to do these things as a child and even as an adult into my mid 30’s,40’s,50’s, and even now, sure that I would do them wrong and be punished or humiliate myself, bring shame or anger of others upon myself.
Making eye contact in a manner considered socially significant can be faked or learned over a period of time. Some autistic people may never have had trouble with this. Studies in 2016 showed that many autistic toddlers willingly made eye contact but did not seem to understand the social significance of such contact and missed the social cues related to eye contact from others.

I wanted to explain here that new information has replaced old ideas about how autism presents itself and to explain that many ideas about “what autism is” and “how autism looks” are not necessarily useful or true. It is great to be living in a time when better understanding is being uncovered and utilized for our (autistic people’s) benefit or aid. This blog is my attempt to perhaps hurry it along.

Feeling hopeful

Random musings from autistic old lady

Not my usual single topic page

There seems to be more interest in stress as related to Autism.
It seems there are tests showing that autistic people generally have more stress hormones such as cortisol in their systems. I am beginning to dig into the reports and studies. One thought is in my mind. Chicken/egg??? Is it reactions to dealing with autism symptoms which the cause of the stress, thereby causing release of hormones or are the hormones that are being found somehow controlled by the autism itself ( and therefore a symptom in its presence alone, even without stressful circumstances which usually cause release of the hormones) and might cortisol and other stress hormones in certain proportions or quantities be found to be a biological marker for autism?
So far all the tests seem to have been done under what might be stressful conditions to any autistic person, enough to cause the release of all those hormones they measured. Much remains to be seen. Watching with interest.

I want to report a great experience with the medical community regarding autism diagnosis. I have reported throughout this blog some of the struggles and miscommunications in my attempts to gain “official medical” diagnosis.
This time was different.
I have been referred to an adult autism diagnostic clinic in another state. My GP’s office had prepared me to expect an appointment next year (proof of the high demand for adult autism diagnosis) and I was duly contacted on the telephone by a clinic representative.
The phone interview was conducted by a person who spoke clearly and enunciated precisely.
She stated clearly her name and her title, and the name of the clinic she represents. She gave me time to respond without feeling pressured.
Most of the questions asked were to confirm the usual facts about birth date, insurance coverage, etc. Those questions were posed so that I could respond with yes or no. No open ended questions!
Even the final question regarding my problem (the reason I wanted the appointment) was set up to give me a choice of answer so I could choose a correct response rather than try to figure out exactly what information was wanted and then have to produce it under pressure of the caller awaiting response. I was given a choice of A, B, or C . Wonderful!
The caller explained the next steps and told me exactly what I could expect to happen. It only took a couple of minutes but it was handled perfectly, and in an autism friendly manner. I feel as if progress is being made!

I called the doctor who had offered to complete my diagnosis on Monday, as he requested. Today is Saturday. No response so far. His website says he retired in July of this year. I am feeling a bit confused. But perhaps I am just too anxious. Time will tell.

Autism in the Elderly population

How many people are we talking about?

I started wondering yesterday just how many people in the US population 65 and above were likely to be autistic. I have used statistics from the Washington DC based Population Reference Bureau( PRB) to try to figure this out.
According to PRB there are currently 52 million adults over the age of 65 in the United States as of 2018. Our life expectancy is 78.6 years.
Using only these figures and not adding all the missed diagnoses and undiagnosed people under the age of 65, and using the often quoted average of 2 percent of the population as being autistic, I came up with at least 1,040,000.
That many adults may be considered to be Autistic without diagnosis, although of course some of us are now finding diagnosis as autism and its hallmarks are becoming better known.
If we add in the population of adults who are younger than 65, to include the adults from all the years before 1980 when autism was first listed as ‘infantile autism’ in the DSM, you can see there is a need for diagnosis in adults now reaching middle age as well.
If you know 100 adults over age 50, you know at least 2 autistic people among them. My high school graduating class just celebrated its 50th anniversary. There were just over 200 people in the class ( 229). I know I was one of the autistic people in that class and I think I know of at least 2 others who, looking back, would probably be diagnosed as autistic. I wonder if they have any idea they are autistic, or if they still struggle with issues not understanding why, or having tools that could help. How many of us will end our days not ever being aware of why we struggled, never understanding the neurological condition that affects us every day and knowing our problems are not a matter of character, morality, goodness, evil, or inner strength, and never knowing that all our supposed/ believed/ blamed by family and society’s pointing fingers of shame…. never knowing what we think are our personal failures are not our fault?
How many of us need the tools that knowing about our autism provides? I know from personal experience how much better is life from the other side of autism and understanding how it has affected me, affected others through my behavior, affected my life, the choices I made, the things I believed, the things I do… everything looks different from this side of diagnosis. It has made a world of difference to me. I would love to know that others like me, even this late in life, could find the utility of new ways to live, peace and understanding that comes with diagnosis of autism.

Diagnosis Dance Continues

Yesterday I was not at home for most of the day. When I arrived, my husband was waiting with a smile on his face and a story to tell.

Husband received a phone call mid- morning from my GP’s office. They wanted us to know that they had tried to give GP’s referral to the Diagnostic Clinic in the other state and that the Diagnostic office was not making appointments until July of 2020. Did I want to go ahead and make an appointment?

Yes, Husband said, continue to attempt to make appointment. GP’s office said OK and that I should expect to hear from the out of state Diagnostic Clinic in a while for them to set up details, date, get info, etc. Who knows how long before we hear from them?

Then when I had properly processed and digested all of that, and was beginning to settle, my husband (secret self satisfied smile on his face) said.. “then I got another call”

It seems the kind psychologist who had been so ill that our diagnostic session in July had to be cancelled was on the phone, wanting to talk to me. When he learned I was out, he spent a period of time talking to my husband and apologizing profusely about the fact that we had not been notified about our previous cancelled appointment . Husband assured him that we were more concerned for his health than we were worried about the cancellation, Things like this happen. Then psych Dr told husband that he was ‘sort of back’ and that he wanted to make an appointment to do an assessment with me if I still wanted to proceed.
Psych Dr explained to my husband how we would go through joint and individual sessions of discussions about my behavior/traits, etc and that I might be given some tests.

Testing is to take 4 to 6 hours. We would get a written assessment at the end of it, no need to come back again, and further discussion at the end of assessment as well.
We want to do the testing and diagnosis procedure ASAP while the Dr is still strong enough. I know he is in poor health and has officially retired, and I wonder to myself if he sees me as “unfinished business” or if he is curious from a professional viewpoint… or what dynamic or motivation has set this in place… I have no insight into other people’s thinking. But regardless of the motivators, I am profoundly grateful that the good psych Dr decided to contact us, to reach out despite his circumstances, and is willing to proceed.
I am to call him this coming Monday so we can set up a time for evaluation as soon as possible. I understand psychDr’s health is still very fragile ( not expected to recover) so trying not to get my hopes up. I feel stunned, delighted by the knowledge that the doctor is feeling better, that we have not lost him, and that he has actually invited me to complete my sessions with him at this time.
I will still set up an appointment with the out of state Diagnostic Clinic if they phone, as “insurance” backup in case we do not complete the interviews and diagnosis with Psych Dr as hoped.

I will cancel the diagnostic clinic appointment if we are able to complete with Psych Dr, and at a year out I will not feel too guilty if I have to do that. Many will be willing to take my place in line.

Feeling grateful, delighted that Dr is doing better and feeling stronger, and that I have another opportunity to get his opinion..Thankful that he would reach out to me in this way.

What an exceptional man! Feeling so lucky/blessed/ encouraged today. Things like this only happen in story books, don’t they?