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 Eye contact, hand flapping and toe walking which is sought in children may have been replaced by other self comforting behaviors deemed more socially acceptable.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!