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 Eye contact, hand flapping and toe walking which is sought in children may have been replaced by other self comforting behaviors deemed more socially acceptable.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:
- 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!
6 thoughts on “Diagnosis adult autism”
I tried to post this comment before so please excuse if it is a duplicate. Debra, your work is just fabulous and it will help so many others. Your determination in establishing your own diagnosis has the potential to help so many others in the process as well.
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Thank you, this compliment means a great deal to me!
I’m working, off and on, on a book to help adults with self-diagnosis. With energy and health problems always in the mix, I don’t know if I’ll ever finish it, but one of the topics I’ve been thinking about a great deal is that the DSM criteria need to be modified for independently functioning adults who wish to self-diagnose. So this post is very helpful, and I appreciate all the work you’ve done.
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Thank you, I hope to help others by my posts, please use what you find helpful here as you you see fit. I write the blog to share the information I am able to uncover with other self diagnosed persons such as myself, and for older people who wonder if they, too are autistic. I hope it helps others to find the same peace and insights as I have found through knowing I am autistic. Wishing you all the best.
I spent my entire childhood being tired. Always drained.Everyday after school I passed out. As an adult I am still tired .I thought it was some sort of sleep disorder but have realized it is from being overwhelmed . I become exhausted from being over stimulated or from just trying to maintain the picture of normal. I am intelligent I have a degree but am unable to use this degree to support me and my family. I am able to use this degree only in IEP meetings and even then I have to have time to comprehend what was said at the meeting.I can help friends with social services questions and do what ant social worker would do. The difference is I can only help 2 or 3 people at a time. I become frazzled and stressed attempting to help too many people at a time. I can mentor young adults but not all the time because I appear cold and uninterested in their life.I do not like to be hugged and the last thing I want when I am upset is somebody trying to hug me .Talking to me only makes my mood worse.I don’t hear what is being said I only hear the sound of the voice and I just want it to stop. I will talk to my best friend my children my family without hesitation but if one more person is added in the conversation I say nothing.I was teased as a child The kids called me a manequin and cry baby. I could not control my emotions and I cried all the time It annoyed teachers friends family .I don’t cry now .Now I am described as being cold without feelings.If I had been diagnosed earlier in my life maybe that understanding would have kept me from living a life I regret.
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I agree, those pains from before we knew or understood are hard to process. Knowing about my autism, even at this late age has at least helped me understand how so many struggles were part of the autism. Now I know, I can understand the painful struggles, bad decisions, hurts and all… It has given me the ability to put those memories into a mental file called “finished business” and has allowed me to move on to learn new behaviors to help cope. Now that I understand (age 68, official diagnosis less than a month ago!) I can put my new understanding to work to make things easier, to heal the hurts of the past, and to feel better self understanding as I finish the last years of my life. I am so glad I understand my diagnosis, it has been a key to emotional peace at long last, and to finally being able to figure out ‘what happened” and the “whys” of all the years that came before. I hope you can find peace and healing too.