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.



SELF DIAGNOSIS

is valid. Here’s why”

I am tempted to simply write bullet points by number here, but there is too much in the details that might not be seen in just an “overview”. Typical of an autistic person, it is not just the ‘general idea’ but the details upholding that idea that are the meat and potato of the sweeping statement given by that bullet/number.

Our information base about autism is growing. Medicine and Science uncover new details and specifics about how autism works, how it functions, how people adapt and overcome its effects, and so much of that information is not found in the texts and school class lessons being given to the future doctors, nurses, analysts, supporting staff about autism. Autism even for neurologists and psychologists is only a couple paragraphs or at most a “chapter” presentation at school out of hundreds and hundreds of hours preparing those who will diagnose and serve the coming autistic generations.

Those who practice medicine, neurology, psychology, social work, and other supportive specialties are taught about autism from the perspective of an 8 year old child, what their behavior is likely to be, what the child’s perceptions are likely to be, and what the identifying factors to spot an autistic child in a classroom or your own examination table is likely to look like. Unfortunately for most of us, this autism symptoms/diagnostic model is based on a 5 year old male.

Those of us who are older will have gained many coping mechanisms and adapted behaviors due to pressures from families, friends, teachers, classmates, co workers, etc. As autistic people age they become less and less like that innocent little 8 year old.

Yet in the forums I attend online I see posts every day about misdiagnosis, autistic women and men being told that they speak and are eloquent, they make eye contact, they don’t walk on tiptoe, make odd intermittent noises, bounce or spin, nope, not autistic. Oh, you have a family or hold a job? You can’t possibly be autistic! You have social struggles and recognize that you are bullied and ostracised, you can not be autistic because autistic people don’t know they are being bullied. Doctors then say” It must be YOU and your bad behavior. YOU need counseling urgently to change your ways.” End result of this ignorance of autism: You are diagnosed as being bipolar, ADHD, Schizoid, Borderline, hysterical, anti social, passive aggressive, or more than one of those false diagnosis instead of as autistic. NOTE this does not mean that one can not also have diagnosis of one or more other conditions to struggle with. If you have been treated for any of these conditions over long periods of time with little or no success, consider the possibility that you may have autism instead.

This is more common than rare because so little has been known about autism and those attempting diagnosis have a fixed idea taught from their own youth in school maybe 15 to 30 years ago about what autism “is” and how it shows itself for diagnosis.
Most of those diagnosing people have never bothered to update their understanding of autism using todays information.

Using USA census statistics, from the Population Reference Bureau in Washington DC I have calculated that there are over 1,046,936 autistic people in the USA over age 65. Only half the baby boomers are now over 65, with the whole generation reaching over 65 in age by the year 2030. Population to support this group as it ages is shrinking and predicted that only 2 adults per senior citizen will be there for support of all kinds. This will mean shortages of workers for every field. Less support for medicine and research, less support for health care, less support for all the other things we rely on, who will grow the groceries, work in manufacturing, teach, run stores of all sorts considered service industries. Dynamics are changing quickly but we may not see this. Of the over a million autistic adults in the USA, how many will get recognized as autistic, get accommodations, get the help they need to succeed as they age? It is so important that the people in medical college in this and coming generations learn how to recognize and diagnose autism in senior citizens and even younger fully grown adults. There is a huge need for autism specialists of all kinds, and more will be needed by 2030. If you know somebody who is thinking about specializing, there is no greater need at the moment than for diagnosis and support of the autistic community.

Because actual professional diagnosis by professionals in practice today is so under prepared, under educated, and under experienced with autism, many must turn to the autistic community, to computer studies online, books by specialists in autism, and other resources to get good current information regarding autism, and especially how autism presents itself and acts in older adults. There is no shame in being self diagnosed. Frequently there are no other resources available due to the few diagnosing services available for the adult community. Most on line groups recognize this struggle as valid and are very supportive of those who find professional resources outside of their reach due to financial , location, and availablility considerations. Things may differ in other countries. I read reports from individuals about how it can be in other countries but have no personal knowledge of this information.
So, How do we set about self diagnosis? It can be done multiple ways.

You can take online tests and tests that have been developed in specialists books. You can join autistic forums and ask questions. There is probably a higher level of ready insights, actual experience, and information available on these forums with large numbers of members. The combined wisdom and experience and the empathetic treatment of those new to the idea of being autistic are powerful to experience, see, hear….

In earlier blogs I have worked through the Diagnostic Manual used for diagnosis of autism today and discussed what they are looking for in each section. Later I worked up a list of things we can examine in our own lives that might point to being autistic. If you have come so far as to reading blogs about diagnosis of autism in old folks, you probably already have a strong idea that you might be autistic. We are on the very edge of a dawning of the real way autism works in our lives, the nature of the autistic experience, how varied the ways autism presents itself. I hope for a better future for all of us who have remained undiagnosed, misunderstanding, self hating, struggling in so many ways when knowing your own diagnosis of autism will help find new ways of seeing, doing, and managing so many of the troubles that are now upon us. Lets see what we can do to speed the process along.

Newly diagnosed Autistic Adults

Comments on forum are a strong argument for adult diagnosis of autism.

I was so deeply moved just moments ago.
I have a routine of checking in with each of the four on line autism forums I attend every morning.
One person had written that she was newly diagnosed and that she wondered what other people’s reactions to diagnosis had been.

People began to check in and tell their stories.
Some said they were initially shocked because they had no idea.
Others said they felt deep loss for things that might have been.
Some said they felt angry that they had spent their whole lives not knowing why they were different.
Some said they refused to accept diagnosis and fought it to begin with, but eventually became convinced the diagnosis was correct, and accepted it.

Every person (and more checking in as the morning unfolds – it is 5:30 AM as I type this) said that they felt relief because they finally understood they were not bad, wrong, morally inferior, weak willed, crazy, broken, hateful, spiteful, mean, cold, or any of the other labels they were given all the years they did not know and understand about their autism. Diagnosis explained so much!

Each person said it was a relief to have the answers to why life had seemed so difficult for them in so many ways.

Each person said it made so much difference in how they felt about themselves, how they saw their past struggles, and how diagnosis helped them make a new life with fewer struggles since knowing about their autism.

That parallels my own experience and speaks volumes about the tremendous need for finding lost autistic adults and giving them the tools they need to live better lives through gaining and understanding their own diagnosis.

I learned something from an article on autism and ageing the other day.
I had not thought of it before in this way.
This requires the assumption that autism has always been with us, rather than thinking it is an epidemic or sudden plague that appeared out of the blue in the middle of last century when it was first suspected and began to be explored.
Stick with me here.
If there are approximately 2 percent of every generation who are autistic, and autism has been missed as a diagnosis in adults ( childhood being measured from birth to the age limit of 20 years old), and there are currently ( as stated in the statistics I read) 5,500 autistic (diagnosed) people turning 20 years old every year here in the USA:
think about the 5,500 autistic adults in every generation each year who missed diagnosis simply because it was not done before 1980, and until very recently diagnosis was very rare.
People of the baby boom generation will have had more autistic people because there were more people born in that generation…
Half the baby boom population has retired, the other half is in progress of ‘coming of retirement age’. Using those same statistics, can we generalize that there are approximately 5,500 undiagnosed adults with autism reaching retirement age each year? How many are in the ‘over 65’ age category?

There are approximately 275,000 (between the age of 20 and 70) undiagnosed autistic adults in the USA alone. Of course this is only an estimate. Nobody knows, because that population is currently hidden. Actual statistics( I have looked at so many studies) estimate autism in all populations occurs at a rate of between 1 and 5 percent. I have assumed a conservative 2 percent for this discussion.

The relief of suffering in knowing yourself to be diagnosed with autism could reach and help so many people. We need professionals to diagnose, study, treat, provide therapies, care for, and otherwise support this group.

I hope that together we can raise awareness of this need and that we will soon see services provided for these truly lost and struggling generations.

OK, this is corny, but you will understand.

“I once was lost but now I am found”.
It has made all the difference to me. I hope others can be ‘found’ too.