Reaction to Diagnosis

I don’t know if it is the same at any age

I have not looked at any studies, but I participate in several autism based groups online. Ideas stated here have for the most part been formed on my own experience with encountering autism, and reported experiences from adults in online groups I belong to.
Each person’s experiences and perceptions will of course be different.

I think it might be a bit more difficult to shift gears as we age. Autism is known to cause rigid thinking. We older autistic folk have had plenty of practice at forming rigid ideas by the time we reach our 60’s.
Is late diagnosis of autism more shocking to those of us who are elderly? I suspect that it is.

As older adults, we have overcome or adapted to many struggles alone.
We have spent a lifetime believing we are “normal” but also believing we are somehow different, incompetent, selfish, bad, wrong, stupid, useless, thoughtless, inept, uncaring, rude, intrusive, hateful, and on and on… a litany of fixed ideas in our older and less flexible brains, learned in our earlier life and more or less accepted as inner truths because we did not know about autism. We have set ideas about ourselves and others and how the world as we see it works.

We may have wondered why we struggled, but learning at last,( although it is sometimes a relief), that autism is the answer, we may suddenly find ourselves scrambling to find a new platform to view our innermost selves.

It is as if the ground we have stood upon for so many years is crumbling.

The foundations of the house we built our ideas on is being torn down.

We will need time to replace these with ideas about our selves and how our diagnosis of autism makes everything different.

Many older people report feeling shocked at first, even though they knew, deep inside that somehow they were ‘different’.
Knowing about autism changes all of the concepts and precepts we may have held about ourselves and our world.
Knowing that we have been wrong in the way we understood almost everything in our worlds, well, that is a lot to digest!


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Let me insert a warning here. Your autism is hugely important to you, but it will be of little consequence to most all of the people around you. They will be likely to react by passing off the information of your self discovery lightly, and assuring you that they still love you etc. .
They will be likely to make ignorant statements about “everybody being a bit autistic” or they will deny it… never mind, don’t argue. Don’t take these things personally. Your diagnosis will mean the world to you, but as in all things, most people will not be able to understand and since it doesn’t affect them personally, most will simply not be very interested. That’s OK. It does not mean they do not care about you, they simply don’t see the significance of your discovery. But they will see the results as you work though your new understanding of your self!


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Learning about our autism is a shock in the way that a sudden loss is… but this is loss of self identity.

Most people newly diagnosed with autism report going through the stages of grief. Shock, denial, bargaining,sadness, anger, acceptance. All appear and disappear, in any order, in rapid transition or slowly over days and sometimes years.
Do not be surprised at your emotional responses to finally learning you are “on the spectrum”.

My major reaction on figuring out I have autism/am autistic was relief. I knew there was something different about me, but had not a clue as to the nature of my struggles or why I seemed to have so many difficulties with things that others seemed to find easy.
I have been grieving in an ongoing way for years, but now I have an answer for that too. I have been sad for the loss of opportunities and things that ‘might have been’. I have regretted so many incidents of the past where I made bad decisions, misunderstood motives, misjudged so many people or situations. I have been angry over many of those things too. Nobody knew!
Feeling cheated of an ordinary life (whatever that is!) and wishing I had known or simply not been given autism as my share in life, feeling extraordinary relief and curiosity on learning how I was different and why… all going round and round inside me.
I bet you will feel similar things and a whole range of emotional turmoil. It is like being engulfed and having to learn to swim. Not a piddly little word, but one with great meaning and consequences “autism”.


Newly diagnosed with autism means loads of emotional homework, lots of looking for new ways to interact with one’s world, and new understanding of so many painful things from the past.
Please give yourself time to process all the new information, the new ways of looking at life and others, the new things you learn about yourself.
It took a lifetime to learn all the ideas that now are being shaken and tested from new perspectives.

Many new ideas will take the place of some old “stinkin’ thinkin’ “. , Many old ideas will be discarded, pains will be dug up and revisited from new perspectives.
I like to say I am a work in progress. My growth in understanding of my world, my self, and everything that applies to these things has been phenomenal. It has been the most exciting thing, freeing, uplifting, a sort of fresh start in a new and better world, to learn of my autism and to learn how to live better through my better understanding of how autism has touched every part of my world for the previous 65 years before I knew, before I began to understand so many answers I found when I found out about autism.


It is my deep hope that the medical community and those learning about autism to apply to professional practices today will be able to help not only children and families dealing with autism, but will be able to diagnose and explain their autism to old people just like me, but who remain still undiscovered and struggling with their Autism without knowing.

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!





Finding out

Once I suspected I was autistic, I began to research online resources with special interest in older adults with autism. I found some surprising statistics. The CDC estimates today from studies done in 2015 and published in 2018, that autism is present in 1 or 2 out 59 people. Of those people 3 out of 4 will be male. Autism was originally described to be only found in males, and it is believed by many that the diagnostic criteria may need to be changed to include traits of autistic women, which are being found to differ from those of males. Autism diagnostic criteria (DSM) as it stands today has been used only since 2013, with varying other tests being used before that date. First time Autism was on the list for diagnosis as its own diagnosis in the USA was 1980 when it was listed as “infantile autism”, removed from its previous category under forms of schizophrenia.

My biggest question : Weren’t there autistic people before it was officially recognized and sought as a diagnosis beginning with infants in 1980? What happened to all the adults ? Autism certainly didn’t just ‘appear’ .