Adult Autistic reaching out

Self Advocacy, Ageing on the Spectrum


Advocate as noun: Person who publicly supports or recommends, or stands up for ( an idea, a person, group of people, certain ideas or beliefs)

Advocate as a verb: To publicly recommend, or support, promote, advise in favor of, stand up for or endorse ( an idea, a person, a group of people, certain ideas or beliefs)

Standing up for oneself , actively representing one’s own interests, welfare, health, well being,

Speaking for oneself of one’s needs, one’s beliefs, one’s best interests is Self Advocacy.

At my age, 6 months away from age 69 years old, I have finally become a self advocate.
Self advocacy has been one of my hardest struggles in life.
I had nobody to recognize my autistic struggles, nobody interested in helping me through my struggles as a child, nobody to speak for me in any situations I found overwhelming, frightening, distressing, or difficult in any of the very many ways I struggled.
I had been trained to be compliant in everything. Wait for directions, wait for permission, wait for somebody to notice my needs or wants.
Don’t bother people, don’t ask for things, don’t be a pain! Don’t talk to me, don’t tell me, don’t say that, I don’t want to hear that from you.

So many of us who grew up this way are simply not prepared to stand up for ourselves and ask for help with our problems.

One of the issues that comes up repeatedly on the adult autism online forums I participate in is how to overcome obstacles in our lives, from speaking out about being abused and asking for help to get safely to a new situation, about stopping bullying, about being blamed, shamed, or victimized in various interactions, including medical situations and needing adjustments or explanations made in health care situations.


One of the many problems repeated over and over are problems with misdiagnosis when people turn to professionals for help in understanding their struggles.
So many of us who seek diagnosis are handed misdiagnosis and scoffed at by those in power for thinking we might be autistic, usually then being told that we don’t fit diagnostic criteria from ages ago, with no current understanding of autism facts that have been learned in the intervening years since the days of the Doctor’s/ professional’s medical training.
One of the struggles we have in obtaining diagnosis is the sheer lack of numbers of autistic people applying for diagnosis.
If a doctor has 2 percent or less of his practice involved in the population they(he/she) sees, how much time will be spent trying to stay abreast of the most recent research and information for those issues? I base the 2 percent of population quote on the current basis of understanding of the frequency of autism in the overall population. Most of the people seeking diagnosis will be better informed than their consulting specialists unless the person we are seeing is an autism specialist.

In so many of our struggles, we know what is best for us, what works for us, what is wrong for us, yet we are somehow afraid to speak up and speak out.
I was afraid of aggression and anger from others, afraid to draw attention to myself, afraid to speak up about things that were wrong or distressing to me. I was convinced nobody cared. I was right.

Nobody does care about you like you do! Unless you speak out on your own behalf, nobody is likely to understand what it is that is troubling you, whether domestic abuse, workplace bullying, medical issues regarding your care, medications, treatment, clarifying instructions you get or attempting to get professional diagnosis.

I have several things that do not work in my favor. I have no social status, I am elderly, I am not physically appealing/attractive, I am a woman, and I am not wealthy.
I do have the advantage of previous training for diagnostic battles. Our now adult daughter struggled from an early age with many things that made life painful and dangerous for her. I got my experience on the medical battlefield when she was young, as an advocate for her diagnosis and treatment, being forced to learn all the ins and outs of insurance, government requirements and definitions of disability, researching diagnoses, finding the right treatments, understanding therapies and medications, etc etc etc.
Mother love was a great force in helping me overcome my own struggles and in learning to speak out for things that were not right for her.

Have you given thought to self love?
Our daughter was worth of fighting for, of seeking treatment for, of my learning about her struggles, learning the required rules and regulations from the government at state and national levels and diagnoses involved, how to apply for help, where to go, who to see, and my learning about medications and help that might be available. I was highly motivated.
Our daughter was/is worthy of continuing to fight for when she had given up. When she was discouraged, when she was overwhelmed, when she was in her darkest times. There has been no question of that!
Would you fight for somebody you cared about?
I think almost all of us would.
Then consider being a self advocate and standing up for yourself when you need to.
I did not think I was worthy. I still don’t want a fuss.

I still am afraid to bother anybody, still am worried about what others will say or do if I speak up. I am timid, I don’t want to annoy or anger or be the focus of negative attention that one draws if one opposes authority in the form of the doctor, the teacher, the boss, the spouse, the family… there is a huge list of people it feels unsafe to speak up to about any subject. My social conditioning is that deep it is a struggle every day to remember it is OK to ask for support, for help, for explanations, for adjustments, for changes, for things I need.

I am also learning that my life can be so much better if I ask for accommodations, if I ask questions about directions, diagnoses, treatments recommended, or even protest or contest certain proposed actions supposedly to be done on my behalf.
I am worthy of self care, I am worthy of respect, I am worthy of being heard, I am worthy of making decisions of what is right for me and speaking up on my own behalf. I had to learn this and fight to overcome my deepest beliefs about myself and my own value.

If the “professionals” you are interacting with dismiss your fears, pooh-pooh your questions, patronize you, demean you, treat you with contempt, or ignore your concerns, please report their attitudes and actions to their superiors and try to find others who will respect you and make you a partner in your own care and other interests.
You are worthy.


I am learning how to be an advocate for older adult autistic people and to educate and to encourage and to speak up whenever I have the opportunity.

First I had to learn how to love myself enough to feel worthy to speak up for myself.

More on self love soon.



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!