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 in Adults USA

extrapolation from Census information

By the numbers. The population of the USA is currently thought to be around 327.2 million persons.

Of those persons 209,128,094 are over the age of 18.

Using the 2 percent as the rate of occurrence of autism in the world population (an average obtained from statistics reported by various studies, estimates range from less than one percent to as high as 5 or 7 percent ) .
This means that there are 4,182,562 likely adults with autism in the population of the USA today. There are statistically 1.6 million children under age 18 who are likely to have autism. Check out the numbers. How many more adults in the USA are likely to be undiagnosed with autism given that autism was not even in the DSM until 1980, and not as we know it today.

Millions of $ are being made through diagnosis and ‘treatment’ of children with autism and every year 5,500 new adult autistics graduate high school and “out of the system”.

What about the millions of adults undiagnosed as children?

Why has somebody not seen the opportunity for working with elder autistic citizens for diagnosis, therapy, promoting health and self understanding??
A few people have.

We are slowly seeing a few “adult autism” clinics opening across the country. All have waiting lists of years, not months or days for adult clients wishing to obtain diagnosis, treatment, and information about adult autism.

What is keeping medical schools from teaching about autism as it presents in adults, and in opening such adult autism clinics?
What is stopping hospitals from providing these services?
Money talks.
All states now have mandates for insurance coverage of diagnosis and “treatment” of autism in adults.

What are they waiting for??????

What Next?

Now I know I am autistic, what next?

I started this blog almost exactly a year ago! So much has changed, so much has stayed the same.

Now I have my ” official diagnosis” I can move forward with my original plan.

I want to reach out to other undiagnosed older adults and help them find out about

autism and how it might have worked in their lives. Diagnosis can bring self understanding,
self forgiveness, new understanding of old hurts, emotional healing, repair of relationships, and learning of new ways to make life better.

For me, this means that I will not only have a blog, but will start workiing on a forum for discussion of autism and the lost generations of people age 55 and over.

I want to develop talks to explain how autism is hiding in these generations and how useful knowing about one’s autism can be to people when they learn of it.

Since December I have been working on developing a two sided single page information sheet to share with others. It has been very difficult to find the right words to explain autism and to create a short sort of self test to help people see if they too might be autistic. Along with this I need to include contact information and a place to go for more information. A lot of stuff to fit on one sheet of paper!

Here is a link to my newly created forum, as a page on Facebook. It is meant for information sharing about autism diagnosis among older people and not as a social page, for parenting, or other ( such as sales or self promotion) venue. Please join up and share – there are so many who might benefit if they were able to find out that they too have always been autistic, but did not know it!

Next I plan to approach local groups and perhaps radio or newspapers to propose a talk about undiscovered autism in the senior populations. I think of such groups as the senior citizens center, nursing homes, emergency room/medical facilities, the homeless shelters, shelter for victims of abuse, drug treatment group, mental illness support groups, etc.

I will print as many of my one page sheets as I can afford to and pass them out, leave them in public places such as grocery store bulletin boards, the library, and other places where people may gather (with permission).

The idea of talking to groups is terrifying to me, but in new understanding of my autism and working on personal growth, I feel bound to try this. Knowing how much I have been helped and how much relief of emotional pain, how much better my life has been since learning of my autism, it is something that seems very important. Important enough for me to try!

OK, here goes… wish me luck! ❤ It is going to be a new year of discovery and exploration. Learning how to be old and autistic at the same time, and hoping to find others along the way. I’ll keep you posted!

Diagnosis attempt # ???

How things change overnight!

Yesterday I woke up depressed, it had been weeks since we got the phone call from the kind doctor who had begun my diagnosis here in this state, but had become so sick that the work was discontinued.
I have been full of anxiety and hope, dropping to despair as it became evident from his website stating that he has retired in July, and from the formal notice from his lawyer just before he phoned us, that he was not working any more.
The final appointment would not happen.

His ( Dr) lack of calling us back after a phone call to his office as he had directed, plus an email 2 weeks later had no responses.

I was sure this was a case of the good Dr’s health interfering and perhaps he might have more “want to” than “can do”.

Yesterday morning I gave in to the blues and felt sorry for myself and discouraged, determined to look only toward the July 2020 appointment already on my calendar with the Illinois Dr who is a well known author and who I am sure understands autism in adults/elders.

Yesterday while I was out of the house running errands the kind doctor called again.

My husband set up an appointment with him for the end of this month Sept 2019.

I am in shock. Afraid to feel hope or relief. I don’t handle sudden transitions that well, even if they are positive.

Dr said he has good days and bad days but wants to go ahead and finish this diagnosis as his health allows. We are to call or he will call a few days before the appointment this time to confirm that he is well enough to proceed. So many emotions whirling around inside me, so many seeds of hope afraid to sprout, so many doubts that this will finally actually happen, so many worries about “what if he tells me I am not autistic”???

and so on.

Sudden changes and arrangements needed! Let alone the arrangements needed to get downstate, hotel reservations, dog boarding, etc. Thank goodness I have my very supportive spouse to lean on. The days are going to drag now until appointment time and I will have a difficult time concentrating on much at all until I finally know.

I am hoping I can get rid of the diagnosis labels the first neurologist gave me , and not be saddled with those throughout the end of my life. I can see where I might end up being drugged and worse if I am ever hospitalized or must have nursing home care. One look at that chart!!!! Saddest of all is that so many older autistic people with struggles are misdiagnosed every day and some spend the rest of their days in conditions such as I just described. Younger autistic women are frequently misdiagnosed as Borderline or Bipolar and treated with psychotropic meds which do little or do damage to them in countless ways.

I am working hard on a series of descriptions and questions to help identify older adults with autism. I have spent countless hours on the internet looking at studies, at current test forms, at the DSM V , and many more hours reading blogs and interacting on a few forums /online internet groups.
I have asked a couple of these groups to collaborate with me and give input.
Each group has over a thousand members and I have gained much good insight and feedback.
The final description of adult autistic recognition and questions to ask to help understand if one is autistic, will be posted here as soon as it is finished.
The reason I do this is because so many of the diagnostic criteria and the tests and forms available to diagnosing medical entities today are aimed at diagnosing children.
Very few autistic adults present now as they did at age 4, 9, or 12, or even 25.
We learn to adapt, we exchange innocent stims for hidden ones or more socially acceptable behaviors. We adjust ourselves in many ways to try to fit into the world, masking skills probably increase for many of us as we age, but the underlying neurology remains the same and our struggles are real and often overwhelming.
A look “below the surface” can tell the story we have worked so hard to hide.
Knowing I am autistic has changed my life in countless ways, all for the better. I hope presenting these traits and questions will be useful to somebody as a help in finding undiagnosed autism in the elderly.

My own official diagnosis is pending. I hope I can help others find peace in knowing that autism was behind so many of the struggles and the pain of the earlier years in life.

Before I knew about autism

It never occurred to me that I was having struggles that other people just did not have. This is a paraphrase of a well known quote by Alis Rowe.

It was always obvious that I was different, awkward, socially unacceptable, uncoordinated, “clueless”.

I blamed myself, and others did too, for my multiple failures to succeed at so many things that seemed simple to others.

I felt enormous guilt and shame because I was unable to “get it” about so many facets of every day life. I was scorned and punished, bullied and belittled because I simply could not (and people thought ‘would not’) behave in ways they expected me to. I simply had no idea how to do what they thought i should do. I can remembering being told over and over to shape up, to wake up, snap out of it, get with it, to stop feeling sorry for myself… to pull myself together, and I can remember wailing “but i don’t know how”.

Since I learned about my autism I have learned that it is my neurological ‘wiring’ regarding sensory processing which is what makes me different and accounts for many of my past struggles. Every autistic person is different, and struggles with sensory input to varying degrees.

What I describe as true for me might not be true for others. I believe this is one of the reasons it has been so hard to pin down exactly what autism is/does and describe it (autism and its ‘symptoms’) so that it can be recognized and diagnosed, helped where needed.

Sensory input is the way we relate to the world, the way we interact with each other… if one or more senses are skewed or how the processing of the input offered differs, it can throw off our understanding of the world. Things that are obvious to most can be a complete struggle for understanding in an autistic person. Our processing is often different.

If you are autistic, or know or love an autistic person, do you understand how you and or they process information and what their specific struggles are? I am going to list what I have learned about my own processing struggles. Each autistic person will have strengths and places where they struggle the most. I was completely unaware of how I struggled, in what ways, until I began to learn about autism.

Some of the things I describe here are not directly related to autism through scientific studies, but have been casually observed to be common in autistic populations. I list them here because they are still ways I struggle with sensory input. Each autistic person’s list will vary.

I am first of all unable to visualize in my head. I see no pictures there at all whenever people are talking, I can not visualize what they describe. I have an imagination, but it does not show me pictures, and it relies on things i have experienced or otherwise stored in my memory to help me understand. This condition is called aphantasia and is present in about 2 percent of today’s population, both autistic and non autistic. It appears to be random or possibly genetic but no link has been made to autism at this time. However, if you ponder a few moments you will see how this might change the way I process information I receive through eyesight.

I have prosopagnosia, the inability to recognize faces.. I may know you from every day interactions for years and still not ‘see’ you on the street. change hair style, glasses, wear a beard or mustache since i have seen you last and i will never find you!

I had a neuro-psychological test not long ago which confirmed that I have difficulty processing visual things. Videos, TV, Movies, Lectures, Presentations, and so many more things which you see every day are difficult for me to comprehend . I have difficulty learning from visual demonstrations (at work or in the classroom etc) I can look at still photos, illustrations, maps, and the printed word and process them easily. It seems to be things in motion that confuse me and happen too fast for me to understand readily. No fast action sports or games for me! I was the kid they threw the ball to so they could watch me fail to react soon enough and get hit in the face. Very funny! I have difficulty judging the speed of oncoming traffic, for example. Anything done at speed worries me to say the least. I just can’t process it fast enough.

I also have problems following spoken word. No radio, no vocal songs, no narrations or reading out loud… difficulties in the classroom, difficulties with instructions in work situations, difficulties in any conversation… can you imagine what it is like to struggle to comprehend most things around you as they happen? My range of hearing is normal to sensitive, being able to hear higher vibrations and lower ones slightly wider range than average. I always wondered why I liked instrumental music so much better than music with vocal parts, especially women’s …. now I understand that it is because I have such difficulty understanding and processing the words involved.

Long before I knew I was autistic, I figured out that in many situations I needed somebody else to explain to me what was happening or to explain when the event was over: “what do they mean by that”?
I have frequently told people that I need to have things explained to me where others seem to know by intuition or some other means that escapes me. Learning about my autism explained that too!

I talk a lot about what an autistic person does not do well, but very little here has been said about what strengths we have. My tests showed (and I knew before- from experience and learning on my search for information about autism) that my greatest strength lies in the written word. I have good spelling and comprehension, vocabulary tests are well above average. I have a gift for words!
Reading has been the key to my personal understanding my world, and I learn best through printed matter. I have spent most of my life trying to obtain information through the format of print.
The internet has been the most powerful influence in my life since books.
For those of us whose world is opened through reading, to understanding, it is a great gift of a magnitude which I am at a loss to explain.

I don’t have to look at somebody and be distracted by their movement, clothing or appearance while trying to understand what they are talking about, struggling to interpret their body language, their tone of voice, and interpreting their motivations, demeanor, inflections while simultaneously trying to sort the information they are presenting from the other conversations, background noise, activities, etc. I can read what they say and understand perhaps with a few questions exactly what they mean. It is a miracle!

My feelings of touch can be hypersensitive, especially to others suddenly touching me in any way ( perhaps a conditioned response). I hate little stickery labels, pebbles in my shoes are intolerable, as are clothes that cause discomfort. I dress for comfort and not style. I seem to experience most other sensory input in an ordinary or average way, appreciating comfort or discomfort on ‘normal’ levels, except that I seem to have a very high tolerance for pain. Sense of smell and taste seem to be “normal” in range .

So that is the struggle I have to live in everyday life. Not “poor me”, simply an explanation and no excuses… but understanding ‘why’ life has been so hard for me in so many ways has been explained by understanding how presence of my autism has affected my life. My understanding comes with new awareness of how my autism also affected my behavior to others and their perceptions of me. Each autistic person’s inventory of strengths and weaknesses will be very different. Many experience the world through mostly visual means, but please understand the fact that we struggle many times to know and understand things that seem obvious to others. Knowing about my autism will now allow me to better adjust my behavior, deepen my understanding, and give me insights into so many windows that were closed to me. I would love it if I could somehow present the self knowledge of autism to those who have yet not discovered the key to understanding their world lies in that one word. Autism.