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.
OldLady With Autism 
Those of us in our sixties have had a very long road indeed. It’s difficult to come to terms with how much of life was spent in isolated turmoil, before there were ways to be found forward into self-recognition and self-advocacy. Most all of use spent decades enduring shame, rebuke, “othering,” & ostracism. This seems likely to be especially true of women. We had no real narrative to counter those negative messages, or our own sense of failure– until quite recently.
Once information about how autism presents in women became more readily available, we then had the added task of reviewing our life story with a revisionist eye. How much of what we experienced was due to our own recalcitrance, our over-sensitivity, or the other personal failings most all of us have been so often accused of? How much of those experiences were thanks to the mistaken notions of healthcare, education and other societal systems?
It’s pretty hard to overestimate the weight of decades of these sorts of private struggles. I often wonder whether the younger members of this community have an inkling…
A thing that preoccupies me recently is elder care. I know that there are elder autistics sitting in retirement /nursing homes / adult family homes right now. And, we’re hearing the statistics. These are dangerous places to be in the time of corona virus.
With advancing age can come a diminished capacity for self-advocacy. With advancing age, many experience diminished executive function, may lose the ability to speak, experience decreased mobility, and more. But, in addition, autistic elders are also just as likely to be suffering from the same sensitivities we read about every day on our forums– painful sensitivities to noise, lighting, odors, to being touched, and more. I also suppose these folks have very likely not been the beneficiaries of a “late diagnosis” and have consequently had no “aha” years to sort through their life experiences and view them anew, through the edifying lens of neurologic difference.
They might not know, as we do, that they’ve very likely struggled their whole lives to accurately monitor physical symptoms and seek appropriate health care. Add to this the fact that the elderly in general have a tendency to under-report pain.
These days, I think about my elderly father, sitting in an adult family home in isolation during this pandemic. No family member is able to visit. He doesn’t even know that he’s autistic.
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