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.



Autism Tools You Can Use

Ways to help you get through autistic struggles

Chances are you already use a few aids or tools to help you survive and thrive in every day activities. Once I learned about my autism and the ways it works in my interactions with the world, I found things to help me deal with struggles in ways I had not thought of before.

It has taken a couple of years and lots of study and thought to understand my worst autistic struggles. I know my strengths and weaknesses within the spectrum fairly well. I have learned “how to be autistic” from others with more experience, and many have shared what works best for them in many struggles. This is a partial list of tools to use to help you get by every day. By knowing my diagnosis, I learned that I could make my own struggles less by planning ahead and using certain tools in new, very deliberate ways.

Sensory processing issues are at the heart of autism.
Things like sensitivity to light can be helped with dark or colored glasses, light blocking curtains, adjustable blinds, rheostat switches on lights so the brightness can be adjusted.

Using different type light bulbs or different wattage around the house, wearing hats with brims, sunglasses, using a parasol or umbrella, can all help regarding issues with light.
Plan ahead for circumstances you can predict. I keep sunglasses in my car, my pockets, and my back pack for driving, stores and other public places, beaches,etc, and the ones at home are for gardening, taking out the trash, walking the dog… etc etc.. Keeping several pairs of sunglasses handy is new to my knowledge of autism. Before I used sunglasses if I remembered them randomly or when I could find them. I made them easier to use by having many pairs in special places. Today they are a tool I use to make my life more comfortable.

Ear plugs, noise cancelling headphones or listening devices can be used for the person who has auditory struggles and needs to isolate from noise and chaos.
I carry sets of ear plugs in all the places I put my sunglasses. They come in handy everywhere and reduce the stress of areas with lots of background noise, sudden loud noise, ( I watched the 4th of July fireworks this year with ear plugs… best yet experience).


Noise cancelling headphones are great, and some people use audio devices the same way, just plugging in to music and hiding the noises of crowds etc in that way.
I do not do well listening to headphone music etc because for me it adds to confusion and is too much stimulation to my already over stimulated brain in those situations.. it is distracting and or disorienting and for me unsafe to use outside my home or in the car. You might have to experiment with music to see if it hurts or helps in your own struggles.

Proprioception problems can sometimes be helped by wearing certain items such as weighted vests or very tight clothing. If you feel more “wobbly” or fear falling as you get older, you might see if physical therapy could help. Check with you doctor! Certain exercises for balance and motion can be obtained from internet sources of prescribed by physical or occupational therapists. It is probably better to involve a professional because of the chance of not performing the exercises correctly and thereby not getting the benefit of the efforts.

Using a set of walking sticks or other tools may give you more input as to your surroundings.


Using a walking stick or cane will also give a visual cue when you are in a crowded situation, and people tend to notice and give you a bit more room.

Short term memory can be helped by using note pads by every phone, at your desk, in the car and in you pockets or purse.. self reminders with sticky notes can be helpful too. Calendars on the wall or on an electronic device can help. There are devices or apps that can give you an alarm to remind you of events or appointments, and there are devices or apps to help you wake up or remind you to take your pills, remind you to eat, exercise, etc.

Executive function can be helped by planning a schedule using calendar, dry erase boards, chalk boards, felt boards, placed by the door or fridge or other place where you must pass it frequently. Reminders can be posted in each room (make bed, hang up clothes, shut off lights) etc… The biggest problem in using these things is to get into the habit to remember to use them. Now I have trained myself to put everything on our calendar, life is not a scramble to remember appointments, meetings, social engagements, etc etc… it is all there in one place because we remember to put the information in place. “did you remember to put it on the calendar?” is one of the most frequently spoken phrases in our home.

Telephone had been a source of anxiety for years. We solved this by using a phone answering device… today most people have caller ID. We also used “nomorobo’ programs to screen against robot callers and dunning sales calls. Today most people only have cell phones which can be programmed to recognize only certain callers etc.

Knowing my needs and sensitivities now I can think about the things that cause me the most struggles and can take measures to make things easier by planning ahead. I can make special foods to take with me on trips. I can make sure I have my coping tools and things to comfort myself. I can plan ahead to have alternatives if things do not work out the way I thought they would. (important stuff to autistic inflexiblity survival).

I can make sure I have the right drugs in the right amounts and use a pill management arrangement to keep track of when or even IF I took the right meds today.

There are so many things we can use to help us keep our lives sorted and on track. Thinking about what will work best for us may take some time, and will change as our needs change and our lives and situations and abilities change. Take the time to think it over and see if you can apply new ways to help you have more comfort and success every day.

Things such as getting good meals might be helped by buying pre-prepared food. (now you can even order at most groceries and have things delivered without having to ever set foot in the place!) Foods that go from the freezer or deli sections and is microwavable… are easier than cooking and cleanup.. or using one of the many food-at home or meal delivery programs available in many places. This saves preparation time, helps with safety issues (burns, spills, oven left on, etc) and cleanup.

Many alternatives are available for cleaning your home and for struggles with shampoo and bathing, too.. If you do not do these things as well, there are products on the market that can help make these chores easier. Occupational therapy may also help teach you new ways to handle old chores.
Laundry will be easier if it is located on the main floor and stairs avoided especially when carrying things such as laundry baskets so that you are not able to use a hand rail.
Cleaning and home help for personal care and most household chores are sometimes available and can sometimes be prescribed by a doctor if needed.

If you do not need accommodations now, do be thinking about what may be needed in the future and try to prepare for it.

Check out agencies available, insurance coverage, talk to family or friends and ask for input. this may give some insights and also help you judge if there may be help available from them if you ever need it. ( Some people think their children or neighbors or friends will provide for them or take care of them if they need help, only to find out too late that this might not be the case) If you want things a certain way as you age, you are your own best advocate to set things in motion to make those things happen.

I know I may have struggles sorting out emotions or dealing with stressful situations. I have had struggles and depression and anxiety and have needed help with issues in the past, both for myself and loved ones. I know that there is therapy and meds that can help many of these things. If you are constantly hurting emotionally or have difficulty with anger or compulsive behaviors, please do not struggle alone. Reach out and get help. There are so many alternatives, and you are not to blame for your struggles. You can learn new ways to deal with these things. There are choices you can make, there are insights you can find, there are new ways of dealing with terrible situations in the past or present. Professional help is so valuable. You are not alone. Please reach out and seek help for painful past or current situations or disabling social struggles. I don’t regret one moment of the time I spent in therapy years ago. It changed my life for the good and better and improved my life in so many healthy ways!

Occupational therapy and physical therapy are available to help me learn new ways to do physical things which used to be easy in my youth but have become a struggle. If you have struggled with balance, depth perception, odd gaits, inability to do daily household self care or care of your home, occupational therapists can show you new ways to do things. Consulting a neurologist or other specialists can help too, especially if you are dealing with multiple diagnoses. If one professional does not help and has no alternatives, remember that you are entitled to a second opinion or even a third.. You know yourself better than anybody else does. You are worthy of being the best you can be physically, emotionally, and mentally. What can you do to make life better for yourself right now? What plans can you make to have a better future? If you can’t find a way by yourself, please reach out to others. There is help available. Make sure you get the help you need.