Recently Diagnosed adults

Autism diagnosis throws everything into a different perspective

As well a writing the blog, I also attend online forums and even am administrator of an information sharing group and a moderator for a couple of social support groups.
Many of the recently diagnosed adults who report their diagnosis for the first time follow up with an emotional response. I am so angry I missed so much because nobody noticed, I am so sad for all the things I lost because I am autistic, I am furious with my parents, teachers, doctors, or others because they dismissed my struggles.

I am so sad, so angry, so frustrated, so relieved, so validated.

Getting a diagnosis of autism after a long life time of struggles in so many ways can be all of these things. Almost all of us go through whirlwinds of emotions as we begin to adjust to the vast and important life change our diagnosis means for us. We suddenly have answers for so many of our struggles, from social failures, problems on the job or in the home, difficulties with perception, balance and motion, problems understanding things that go on around us and have gone on all of our lives. Now with our new understanding that it has been our uneven neurological development that has played havoc with our lives all this time (and nobody knew!) we can forgive ourselves for our failing to live up to others’ expectations. Blame and shame surrounding our performance ( or non-performance) in almost all parts of our lives has led us to feeling guilty, believing we are somehow bad people and that we are failures due to lack of character, inner strength, willpower, laziness, ineptitude, stupidity or moral failure.

Finally, we can see how our unevenly developed neurology has given us struggles that “normal” (neurotypical ) people simply don’t have.

We can understand why we were blamed, punished, shamed, bullied, etc. Nobody knew!

We can finally forgive ourselves for all those struggles and years of disappointing results. It was not “all our fault” after all. Now we know WHY!!!!

Don’t be surprised if you feel completely at odds within yourself. It is going to take a while to look at just everything in your past and in everything around your every day life today and see how autism has had its workings in it all, even though we may never have suspected.

Its likely pretty normal to have these emotional responses. Our world has been turned completely upside down and now we suddenly have this new perspective that shows us things we may never have understood before. Of course it is unsettling!

Do your very best self care as you begin the journey to your new life with this new understanding.

You will have loads of questions, old memories seen in new ways, and you will begin learning new ways to live your life using new every day tools in thought processes, behavior, self accommodation and more.

I promise you things will start settling down as you find your way little by little and begin to experience those marvelous “aha” moments when something confusing, painful, frustrating, exciting suddenly makes sense.

You are definitely not alone.

More and more older adults are finding diagnosis and changing their lives for the better as they go forward after recent diagnosis of autism.

After autism diagnosis

Now what?

The word is out! More “fully mature” adults (over 50 years of age) are learning about autism and asking themselves related questions.
Am I autistic?

Statistics show there are more autism diagnoses being made in adults of all ages.

We will spend a lot of time looking for qualified diagnosing professionals , struggling to find those with actual experience working with adults autistic individuals and who are willing to accept our insurance, set up a payment plan, give us an appointment some time in the future (up to 3 years waiting time sometimes in autism clinics especially for older adults).

We will spend a lot of money driving to appointments, staying in motels or camping near by, we will be stressed and distressed and struggle to find the right professionals in places we can reach and struggle through strange places to sleep and eat, new places to navigate, new heights of anxiety and distress .

If we make it as far as getting that precious appointment, we may find we are saddled with “other diagnoses” that explain our behavior and struggles because the diagnosing individual is not actually familiar with autism and the many ways it can show itself in mature adults who have coped and adapted on their own for so many years. We may give up in despair but still believe in our hearts that we are likely autism. Self identification of autism is accepted by many autistic groups for adults because we have experienced first hand how difficult it is to find competent professional diagnosis .

So after what is likely years of focus, struggle, many phone calls, emails, in person visits,referrals, failed leads, so many inquiries, searching for diagnosis, we finally find a rare medical professional who recognizes our autism and we have a name for our struggles and distress in all the years of our lives that came before.
Autism!

We know now that we are autistic. Autism has worked behind the scenes all our lives and most of us, although we were painfully aware of being “different” but had no idea why.

Autism answers so many “whys” of the past.

It explains physical struggles with balance and coordination, it explains our difficult social interactions with others. We can understand why we find so many experiences overwhelming. We can understand how our neurology fails us in things such as sensory input.

What we see, what we smell, what we hear, what we taste, how we move, how we process our emotions may all be influenced by the neurology we have been given, present from birth, and nobody knew.
Suddenly we can begin to understand how autism had its way with us all these years. We understand why we do many of the things we have done all this time to comfort ourselves, trying to find ways to cope with stress caused by events of every day living when we have many struggles that are not visible or understandable to others (let alone to ourselves, having been shamed, scolded, blamed and punished all this time for ways we have failed to live up to the expectations of others. Nobody knew!

Now we do know about our autism, we can begin to discover all the working of autism in our every day lives. We will experience a huge range of “roller coaster” emotions from anger and sadness, grief for our lost earlier lives and the pain of our childhood and early years, right through relief, a sense of release and anticipation, confusion, bewilderment, overwhelm; we are likely to experience it all.

Here’s where I am seeing so many posts and blogs and questions. We have established lives , we have coped and made adjustments, we have worked so hard for so long. How do we proceed from here? How do I do self care, self accommodations, how do I go on, now I know about my once hidden autism. What can I do for myself to make my life with autism easier, less distressing, less overwhelming?

First thing, understand that it took you all your life to get to this point. There are no miracle “autism treatments”, no “autism drugs” , no “autism therapy” waiting for us.

There will be lots of information to sort through, lots of people wanting your money to give you special diets, special schedules, special “therapies”, special supplements and making outrageous claims for their special programs.
It is easy to get lured down a path which promises miracles. Please keep an open mind, but do your homework. Research scientific reports carefully to see if results of any program have been proven and posted in reputable peer reviewed journals and repositories of such records.

Here is the truth. We can not change our autism, but we can change the way we face and cope with so many of the struggles we are presented with each day.

Learn about your own neurology. Read and understand what autism IS and IS NOT. Figure out what your best strengths and worst weaknesses are. This is where a report from your diagnosing professional can help. Usually there are tests given and results shown as part of the diagnosis and summary of the evaluation examinations.

In autism it is typical for us to have a few very strong features, even ranging into the level of being gifted in some way. It is also typical for us to have very difficult challenges in the way we are neurologically set up to “do life”.
Using my own diagnosis as an example, I learned I was gifted with words, comprehension and usage, but I had only 25th percentile visual processing and 35th percentile auditory processing.
Thinking back I realized why I have always used reading to get information, because what I see and hear in “real life” interactions is predominantly useless to me.
I may see well due to corrected vision ( I wear glasses) and my hearing tests at very high and low ranges, I can hear more than the average individual.
BUT what I see and hear is predominantly useless to me because it is never processed, never registers in my mind at all. What goes in does not stick or register in any meaningful way, only snatches of understanding are available to me in any “real time” interaction.

All my life I was told I was not paying attention, I was not trying, I was not applying myself, that I was lazy, thoughtless, and many other labels were given to me to explain my failures all those years.

Your neurology may be completely different, with different strengths, different struggles with sensory input of one kind or another.
Look for the best and worst performances in your test results. It will give you clues. If you don’t have test results, for weaknesses, think about the things that have been hardest for you in every day life, all your life. Find strengths by thinking of the things that give you enjoyment, pleasure, or a feeling of being competent.

Now I understand what was really going on, that I have actual neurological difficulties that make many common daily activities very hard for me to perform, I can find ways to substitute activities, support my weaknesses, adapt my life to new ways of doing things that will not put such pointless demands on my neurology.

This comes at a price that might make things very difficult for you and those around you.

Things have not been working so well for a long time, trying to make those things better will shake up our routines.
Those who live with us, work with us, and interact with us daily may find those changes less convenient, may resent that we no longer choose to force ourselves to do activities that cause us misery.
Others may not understand when we begin to make personal decisions about our lives to make things easier, less distressing, more comfortable from health, emotion and mental well being standpoints as well.
When I began to look for self accommodations I realized there is a huge lack of information about all the ways we can deliberately change our lives to make things more comfortable and easier every day.
There are so many changes we can make !
We can start by finding the worst struggles, eliminating or coping with triggers in new ways, figuring out “work arounds” to make our worst problems of every day living easier to cope with.

We can change not only physical surroundings, but also our routines, our jobs, our living circumstances, our clothing, our attitudes and outlooks. Its a lot to sort!

What is hardest for you, every single day?
Does it have to do with demands from others?
Does it have to do with sensory input that affects you in unusual ways?
Does it have to do with your own attitude, expecting yourself to perform as society says you “should” and giving yourself anxiety, depression, overwhelm , meltdowns, and conflict within your home, at work, in other areas of social interactions?

Have we developed bad habits to cope with our struggles, with alcohol, addictive behaviors, street drugs, maybe neglecting our health and not exercising, bathing, or maybe we over eat?

There are all sorts of things we can change. It might take courage to find new ways, to face family members and draw the line, refusing to participate in activities they may expect of you, but that cause you distress and misery. There are many substitute activities to suggest and to try “instead”.

Take the time to think about all the ways you struggle every day.
As individual struggles, what can you change to make things work better, go smoother, be easier on your senses, be less distressing or overwhelming?

Relief does not come overnight! Expect to have to work at sorting your own autism and maybe expect to try several things before you figure out what is right for you.
Over time with many small adjustments and maybe some large lifestyle changes, you will likely find the path is smoother, the struggle is less, the rewards greater.
Don’t be afraid to sort it out and try a few changes !
Your health, well being, and daily improvement to your quality of life will be observed over time.
Things will get better. You are worth it!!!

Adult diagnosis of Autism

Things you might not know

It might surprise you to know there is no standard procedure to determine or identify autism.

There is not a genetic test, a test for chromosomes, blood test,
a certain “look” or appearance ( You don’t “look ” autistic) for autism.

There are no standard characteristic behaviors that all autistic people share.

Science is still learning how best to identify autism. In recent years more information has been discovered that has helped shape our idea of autism.

Autism’s rarity (believed to be 2 to 3 percent of the total population although nobody really Knows, since diagnosis is often missed, especially among minorities and among women).

There is not information about autism in many cultures around the world,
its frequency, nor is there understanding of autism at all in many places on earth.

Many diagnosing doctors in “developed” countries around the world are using information that is decades old, and these “specialists” may not be seeking new information besides what they learned as students.

Information in books is not up to date- by the time any book is published much information is already dated.

Consider then, that those professionals who went to school 30, 20, or even 10 years ago will be using information they learned that long ago from books that were outdated when they were studying them, and attempting to apply it when they try to diagnose autism.

Unless they have made autism a specialty, only 2 or 3 percent of any neurologist, neuropsychologist, or psychologist’s clients will likely be autistic.
With so little understanding and so little practice at sorting information regarding diagnosis, is it any wonder that even when we attempt diagnosis by a professional, so many of us (autistic folk) are given misdiagnoses?

Don’t be dismayed if this happens to you. You can keep seeking diagnosis with somebody who specializes in autism and has experience with adults, minorities, women, elderly, etc. depending upon one’s self description. There will be difficulty today in locating such an individual.

Many adults report living with misdiagnoses and being unsuccessfully medicated or given treatments for disorders they do not have until their autism was discovered. How many others are out there still, being given ineffective treatments, being told they are atypical or intractable examples of their (wrong) disorder?

If all treatment fails and you are still suffering and not finding change or relief for your diagnosed disorder, you may have been given a false diagnosis/label due to the lack of familiarity with autism and the many ways it can present itself.

Today autism is diagnosed by observing behaviors, testing neurology, discussing one’s life history and quirks and struggles. Everything depends on the skill and experience and up to date knowledge of the diagnosing professional.

The only criteria that is used is behavioral.
There is no other criteria at this time that can be used.

Autism is still new to science and until very recently there has been very little understanding of autism as having a neurological basis. Even in the past 5 years autism is described as being neurodevelopmental and based in the differences of our neurological development as compared to “average” or “normal” development in our peers.

Obtaining diagnosis for autism in adults will become easier in time as better tools are found and applied by more competent and better educated professionals. That time can not come soon enough for the over 5 million autistic adults in the USA, most of whom have no idea they are autistic.

How to Seek Diagnosis

Common question with multiple answers

It has been almost 2 years since my formal professional diagnosis. Since that time I have read countless blogs and participated in multiple forums for autistic people of all sorts.

One of the most commonly asked questions is “how do I seek diagnosis”?

Unfortunately, there are very few competent diagnosing professionals for adults with autism, or suspecting autism. Information about autism is being updated almost daily and many professionals fail to keep up with changing ideas and thoughts about autism.
It is still very common for an adult seeking diagnosis to be told it is impossible for them to be autistic because they are in a relationship,married, have children, make eye contact, hold a job, or live independently. Many diagnosing professionals believe that autistic people do none of those things.

Many adults seeking diagnosis are turned away with the diagnosing professional saying it is too late anyways, “you are already living your life and what good would it do to get diagnosis now”?? “there is nothing we can do for you now”

Those seeking diagnostic services as adults need to be aware that it is possible, even common to encounter rejection, mockery and ridicule, misdiagnosis, and misdirected “treatment” with both drugs and recommended “therapies”.

How do I find a competent diagnosing professional?
Here are a few strategies gleaned from much discussion with others over the period of time since I was finally able to obtain my own diagnosis.

Be prepared to travel long distances, pay out of pocket, and recognize that it may take a very long time.

Many insurance companies will not support “testing for autism” but will support psychological or neuro-psychological testing in general.

Check to see if your insurance covers psychological testing. Part of the testing process may be covered by insurance, medicare, or supplemental insurance, but it is likely to require co payment of some sort. If money is an issue (and for most people it is a big one!) check out the coverage you might have first. Ask if they will accept client (you) claim submission for out of pocket payments using “out of network” psychologists.

While you are talking to the Insurance company ask them if they can recommend psychologists or neuro- psychologists who accept their plans.

Do you know others in your area who have obtained diagnosis as an adult? Is there an autism group, support group, or other autism (therapy, social, etc) group in your area? You may find diagnosis by asking these groups for recommendations or referrals. Even if the group is for children or minors, many of those parents may also be autistic or have obtained diagnosis. Most will be glad to share the name of their diagnosing professional.

You may be told by insurance to visit your GP for a referral. Many GPs may know somebody in their professional circles or within the group they practice in. Many will not .

Finding diagnosis can be a struggle of its own, things are gradually getting better, but for most of us who missed diagnosis in the 80’s and earlier, we can expect to have to be persistent and diligent in our search and to rely on patience and self care to see us through.

If personal contacts do not bring forth names of professionals willing to work with you, you can ask in forums and pages on the internet.

There are lists in some internet groups depending on location, which have contact information for diagnosing professionals.

Cities with high population, teaching hospitals, and medical colleges will be more likely to contain a professional who is experienced in screening adults for autism.

There are individuals who are willing to do diagnosis today online or on the telephone using webcams and other technology. Covid has made this possible and can be a blessing for some, but be aware that if you are seeking disability or legal accommodations in the USA you will likely need to present documentation from a USA doctor and it will have to be part of your medical records.
Internet medicine and related practices is full of fraud and if you can not ascertain an established practice with a physical address, phone, email and other contact information, or if you can not find documentation from the state (Doctors and businesses must register and be certified or licensed by the states where they practice, and those documents are public record) then do not proceed!
Verify credentials and any internet information using at least 2 other sources. In eagerness for diagnosis, don’t be duped by slick imposters and tricksters.

Locating possible professionals is only the beginning!

Calling or emailing for information comes next.

1. Express interest in obtaining testing because you suspect you may be autistic.

2. Ask if the professional sees adults, older adults, women/or other descriptions of your self identity

3. Ask how many autistic diagnoses the professional has made. How many women, etc?

4. Depending on the answers, ask for the professional to phone you regarding your interest in being diagnosed. If the professional does not call you back and you are pressed to make an appointment, do not proceed.

5. When the professional phones you, ask the questions 1 through 3 in person, and see if you get the same answers.

Do you communicate easily with the professional? Do they answer your questions and ask questions of their own? Proceed to make an appointment to meet and talk in person about the diagnostic process.

Do you feel as if they are being abrupt, impatient, condescending, or are angry with your questions? Do they push off or put off your questions and prompt you to make an appointment for diagnosis rather than a pre- diagnosis meeting right away? Do not proceed if these warning signs are present.

Other questions to ask: How many tests have been performed and how many adult diagnoses given?

How many women, or other self descriptions have been diagnosed?

Do they give follow up support? If so, what sort of supports are offered? ( therapy, support groups, reference to others who might be able to help with specific needs?)

Discuss fees and if you decide to make an appointment to discuss diagnosis processes, be sure you understand how the paperwork and billing will be handled ahead of time, so there are no surprises.

Some doctors will refer you to their offices for this part, that is OK, Be aware of your insurance company’s needs regarding diagnostic assessment, etc… do you have to get the appointment pre-approved?

More discussion about finding diagnosis soon.

Note: This process can be very discouraging and frustrating, especially for those of us who have struggles using the phone, camera/video communications, or have anxiety. Self care is so important.

Be aware that finding proper diagnosis is not generally easy for most of us today. (autistic elders).

Things will take a lot of time and we may reach many dead ends or barriers, but we are not without alternatives in most cases.

The cost of misdiagnosis

and missed diagnosis regarding Autism.

I have been searching and researching for information and studies, statistics, etc regarding the missed diagnosis of autism and its misdiagnosis as “something else”.

Interesting to me is that most times when I searched, I found many discussions, studies, conversations and articles about children being misdiagnosed with autism when they were not.

It seemed to me as though this is a common question among parents with newly diagnosed children. Maybe difficulty accepting diagnosis, maybe wishful thinking/ denial? I was amazed to find page after page of discussion about how this could happen.

I found very little regarding misdiagnosis of adults with something else when instead they should have been diagnosed as autistic. I have commented many times that there is a vast vacuum/ echoing empty space on the internet in place of articles about adult autism, finding older adults with undiagnosed autism, etc.

I participate in multiple on line forums especially for autistic adults. One common topic is how so many of us have garnered so many diagnoses of all sorts before we knew were autistic.
So often a forum member would explain that their bipolar, their schizophrenia, ADHD, Depression, anxiety, or their other diagnoses were atypical and did not fall into the usual categories of definition. Many have been treated for years with partial to limited success. Many have given up trying to get help because the continual lack of success is so discouraging.

Discovering that they are autistic and understanding their diagnosis had freed many from series of unsuccessful treatment attempts, from shock therapy, over medication, institutionalization or hospitalization for intermittent periods, and on and on. Traditional analysis and therapy are often unsuccessful. I went to several other therapists before I finally found one I could communicate with, who understood me, and was able to help. I was treated with medication for years for depression and even more so for anxiety.
Now that I know I am autistic I have understanding necessary to give me a great deal of relief where traditional treatments had failed.

What if all of us had got proper autism diagnoses earlier? How much emotional pain, how much suffering, how much damage due to side effects of powerful anti-psychotic medications, how many social struggles such as unemployment, poverty,homelessness, suicidal behavior, emotional outbursts leading to trouble with the law, hospitalization, etc could have been prevented?

This post breaks my usual policy of not sharing documents and links to other pages because it explains everything I wanted to explain in my blog, in better words than I could explain it. Please read and think about how much we as a society have lost with our lack of understanding of autism, lack of training specialists and giving them tools to properly diagnose autism, the lack of access to diagnosis, the struggles and troubles that could be averted if we finally understood our own autism and were able to see how to make accommodations and to use self care or access tools already available in many places to help us in ways that we need. Finally needs of older undiagnosed adults is being recognized and brought to light. The voices of many have been raised in chorus and at least in some circles, we are being heard. Feeling grateful.

https://link.springer.com/article/10.1007/s00406-020-01189-w

What happened to all the autistic children?

They grew up to be adults!

Awareness is rising about autism and most people have heard of autism. Autism is primarily thought of as a children’s issue in the eye of the general public. What happens when these kids grow up? What happened to all the children who grew up before autism was commonly diagnosed in kids? They are now autistic adults!
If the CDC is right, there are well over 4 million autistic adults in the United States alone, and most of us have never suspected we are autistic.

How do we find autistic adults today?

Autistic people are more likely to be suicidal.

Autistic people are more likely to be victims of crime.

Autistic people have a higher rate of depression and anxiety.

Autistic people account for about 10 percent of admissions for treatment in rehab centers for alcohol and drugs ( compared to 1 percent of the general population admitted) This is truly stunning when you understand that autism is believed to affect 2.2 percent of the general population.

Autism may account for up to 10 percent or more of the homeless population.

Autism may be involved in those admitted to jails and prisons although very little or no research has been done specifically on autism. Intellectual disability in general has been studied as a factor in prison populations and shown to be present in higher than normal levels among the general population.

Autistic people tend to have poorer health and to die younger. Life expectancy in some studies is as low as 38 years. Other studies say around 58.

From these statements one can see how knowledge of autism would be particularly useful to certain groups. Doctors and health care workers of all types, law enforcement professionals, social workers, can you name others?

Diagnosis of autism as an adult can change lives. Self understanding is one of the keys to finding a new life amid common social struggles. Autistic people seem to have more than our share from a statistical reporting level at the very least. I can not tell you the huge difference my understanding of my own late diagnosis has made in my mundane and every day life. I can only imagine how useful such self knowledge can be to those struggling with such difficult issues in their lives, and how useful it would be to know and understand about how autism may have been involved in so many lives of pain and hardship.
I am reading of mandatory screening for autism in new hospital admissions for suicidal behaviors. I am reading of mandatory screening in clinical situations for care of those struggling with addictions.
I am grateful that professionals in some places are using today’s understanding of autism to help recognize and diagnose autistic adults. So much more needs to be done. Please help spread the word.

Autism Awareness April

April has been designated Autism awareness month once again.

The word is getting out. Autism awareness and acceptance news is spreading.
This is a challenge to all of us to go one step more, some of us will make posts, give talks, write our blogs, participate in other awareness and acceptance activities.
I hope we can add awareness of autism in adults to the things we discuss this year. (2020)

Extrapolated from the most recently completed USA Census, There are 1.6 million children in the USA (2 percent of the total population of those under age 18) who likely are autistic.
Awareness is rising and help is becoming available for children. Never quickly enough but we are definitely making progress.

Children do grow up. Here is a statistic that might surprise you.
Did you know there are likely 4.2 million autistic adults over age 18???
(2 percent of the adult USA population age 18 and older). Did you know the majority of them will be completely unaware of their own autism?
Please share these statistics. Those of us who are affected by autism know the difference a diagnosis makes in our lives.
Thanks for sharing, and for promoting understanding of autism in all ages.
Learn more here:

https:// oldladywithautism.blog/author/debrabrisch3436/

feel free to copy and paste! Share Share Share thank you.

Summary Report

of my autism diagnosis from 2019.

It finally came in the mail yesterday. I had waited in anticipation for months.

Earlier in the blog I have been telling the story of my struggle for diagnosis. Finally the last bit has fallen into place. It is finished. I have papers now that say a professional has diagnosed me as autistic at just short ( 3 days) of my 68th birthday.

Last visit with the psychologist was the last day of September. He promised at that time to have a written report finished and to me within a few weeks. I waited a couple of weeks before I inquired at the office.. I had not got a bill, I had not got a report from the doctor… I was told that my bill had been sent to insurance and to wait until we heard from them before asking again. I got a call from the Doctor saying he had had a relapse and that he would get the report to me before long, certainly before the end of the year. I felt terrible that he was under pressure to finish this when his health condition is so severe. I waited in growing distress about his health and about gaining the paperwork to finally make myself completely “official”. I did not want to pressure him or add to Dr’s struggles which must be overwhelming and so sad for him and all his loved ones… but I still was anxious about seeing the final report.
There was a fat envelope in my mailbox when we got home from grocery shopping yesterday. 5 pages summarizing both visits and the doctor’s observations, the way I presented myself at the interview and subsequent testing results, all there for me to see in black and white.

There were terms I was not familiar with, and I looked them all up, thought I would repeat them here so everybody can understand them. I knew about ‘flat effect’ but was surprised that he mentioned that I present with flat effect. I had no idea! Flat effect is lack of expressiveness in facial or body movements (reflecting emotions) and can also mean flat tone of voice or odd expression or inflection of voice when speaking.

He said I did poorly on information sub tests… I was amazed at how poorly I scored in visual processing, auditory processing, and he mentioned visual-spatial struggles, motor and sensory struggles.
He said I had ‘cognitive impairment” with these 2 categories. It means I have struggles to understand , something that has been with me all of my life.
I have been aware I had struggles, but the very low scores in both visual processing ( 25th percentile) and audio processing ( 34th percentile) was a bit of a shock… Those scores are very low! I was stunned for an hour or two, and my primary reaction now is to wonder how I have lived life and done as well as I have in spite of those handicaps.

The answer of course, is because I am very good with words. My vocabulary and verbal comprehension came out at 98th percentile… My ability to use and understand words is my real strength.

These things are all things I had understood before and at the time of my tests and diagnosis, but I would like to point out how extremely different my scores were on these tests, either I was quite good, or I was very very bad. One of the primary descriptions of autism’s effects is that it causes uneven neurological development. I’d say this report is a good example to illustrate that description.

I am of high average intelligence and there is absolutely no doubt I am autistic.
I was interested that the doctor said if Asperger’s diagnosis was still in use, that is the category I would fall into. But as DSM 5 does not offer that choice, I am autism level 1. I am autistic

I am so grateful to have my diagnosis through the generous work of the kind doctor; in spite of his failing health and his own personal troubles, he took the time to see my plight and to reach out to me to complete my report. I am to be his final diagnosis. He retired in July of 2019 due to his health, but he offered to work with me for a diagnosis after that. Now the work is complete. He has given me a gift I can never repay. Feeling blessed.

autism in elders

raising awareness

This is the first edition of my one page autism in elders awareness flyer. Everybody is welcome to reprint and distribute it if you see fit to do so.

AUTISM in older adults???

Autisticelders@gmail.com
Autistic Elders on Facebook. https://facebook.com/groups/543548473159235/
Blog https://oldladywithautism.blog/author/debrabrisch3436/

LOSER! Thoughtless, rude, cold, uncaring, inept, inappropriate, failure, outsider, weirdo, clumsy, out-of-it, gullible, stupid. Have others given you these labels? Has it seemed impossible to do anything right? Have you been told it is all your fault? Do you think your life has been much harder than other people’s but not sure why?

Do you have trouble understanding what other people expect of you? Are people often angry with you and it is not clear how it happened or why?

Are you too open and trusting? Is it difficult to stop others from using or abusing you?

Are you bullied, and do you understand why?

Are you estranged from family members or do you have few or no close friends?

Have you had “people problems” at home, work, school, and other places?

Are you often frustrated, hurt, angry, sad, depressed, or anxious? Do you feel misunderstood and socially isolated? Do you have a sense of “otherness”?

Do you wonder why it is so hard for you to do so many things that seem to come easily to others?

Do you self medicate using cigarettes, booze, street drugs or other things to help you deal with life?

Do you have a very narrow range of interests, but the interests you have are intense and all consuming?

Do you have a lot of self blame, do you believe the negative labels you have been given?

What if You found out that it was not all your fault after all?

What if I told you that you might have an in-born neurological difference and that you have struggles that other people simply do not have because of your unusual neurology?

HAVE YOU HEARD ABOUT ADULT AUTISM ?

Today most scientists believe that autism is probably genetic, although causes have not been completely identified, there are several genes that have been identified as associated with autism. Autism is present at birth, it is not caught, does not develop, can not be cured.

Autism causes uneven neurological development and is present at birth.
All autistic struggles are based on neurological functioning and have to do with sensory processing. Our understanding of our whole world is based on information gathered and processed by our senses. Every person with autism has sensory processing struggles, but in every autistic person the struggles are different.

What happened to all of the people with autism before 1980? We are the Lost Generations. We grew up struggling and being blamed for our lack of success. Nobody knew! Autism affects approximately 2 percent of the population according to conservative estimates. Some studies suggest autism may affect up to 7 percent of the general population. There are millions of undiscovered and undiagnosed adults ( over 21) who are unknowingly autistic in the general population. Autistic struggles can be recognized and helped with diagnosis. Diagnosis can be life changing.

Diagnosis even at a very late age can bring healing of hurts, self understanding, and provide new ways to live a better life through accommodations once it is known that one is autistic.

Are you somebody who is struggling in life? Do you know somebody who might find the descriptions here familiar? Undiagnosed autistic people have gone through life not understanding that so many of their struggles are not their fault, that life really is more difficult for them, and that there are many ways to make life easier once we know about our autism.
Contact Autistic Elders at Autisticelders@gmail.com or check out the links at the beginning of these pages for more information.

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.