Evolution of the autism blog

My own personal blog is changing as I change

I woke up with thoughts and insights about how much my life has changed as my understanding of autism has changed and grown.
I have grown too, and it seems to me that had I known of my autism years ago I might have gained much benefit. Today’s understanding of autism has been most helpful, but of course a diagnosis until very recently would not have had the same sort of information to help me make the most of my world.

I have gone from simple wonder and gratitude and curiosity. I began sharing what I was learning as I went along, actively seeking new ways to try to reach out to individuals and groups to explain and inform about adult autism.
I began to try to show how diagnosis can benefit older adults especially, even those near the end of life, like me.

I continue to look for new information, scanning published reports and following blogs.

I participate in several adult autism support groups, and one for mixed age autistic folks as well.

I am learning that most published information from bloggers and those sorts of popup magazine like pages which have autism information meant as a 2 minute read are rarely accurate when they quote recent studies.

I am learning that blog writers often “get it wrong” too, when they use studies as reference in comments. One recent blogger claimed that studies proved people did not want to live in the same neighborhood as autistic folks, but when I looked up the study, that was a misinterpretation of what the study results claimed.

I encourage everybody to do their own research for better understanding. Don’t take somebody else’s word for it, go to the source whenever possible and see for yourself if what you are looking at agrees with what somebody else claims it does.

One huge difficulty is that so little research is being done on older autistic adults. There is very little information to glean from if we use studies as our source.
Many studies have confirmation bias, and are poorly designed, or are statistically invalid because of the very few numbers of autistic people involved in forming the group to study.
One “wild card” would skew everything on the study and all information would be suspect.
There are lots of preliminary investigations regarding autism in mice. I tend to be very skeptical of these studies because of the huge differences between mice and ( ahem) men.
If they can breed autistic mice, doesn’t that confirm that autism is indeed genetic??? (rhetorical sideline)
I have questions about the idea of autism being created in mice to begin with. Those things may be of benefit in 2055 or 2099, or they may be discarded, but anything gained is definitely not useful to me as an old lady who is fairly certain I have far fewer years of life ahead of me. Your thoughts and ideas may differ, and that is OK too. Autism in mice does not seem to apply to my own life and it seems unlikely that it will. I do not follow these studies because they will not apply to anything useful in my generation.

I am gaining confidence in my abilities, understanding my disabilities (some might say differences or weaknesses or “struggles” to stay within the politically correct center).

Knowing my strengths and weaknesses has helped me fashion a better life. I am able to make informed choices, understanding better how much energy, patience, determination, and focus it might take to embark on anything new or different. I am much more self forgiving as I recognize my problems with communication and socialization are due to my neurology and my hidden inability to understand most anything that happens in “real time”. I can allow myself to set my own boundaries and choose my own activities without feeling guilty because I do not do what “everybody else” does.

I am scheduled to do an interview for a newspaper about raising awareness of older autistic adults and the need for diagnosis. (April is autism awareness month)
I am worried about the interview, which will be face to face, and I am preparing an information sheet with facts to give the reporter, because I do not trust that I will be able to present information well in person. Anxiety will be very high and I know I do not make a good impression in person because of my awkward presentation, my slowness in understanding and my tendency to stampede in conversation when I am anxious. Years of conversational failures with strangers is not a basis to proceed from with confidence.
That is OK. If I can deliver the message that my life and my own self awareness was a far worse struggle until I knew about my autism and began to understand my past and my neurology, then I have done what I aim to do.

I am spending much more time on support groups interacting with other older adults, trying to encourage and share information that might be helpful to them as they look for diagnosis or come home with that diagnosis in hand and wonder “what is next?”
I think I am fairly well informed about autism and that I have a basic understanding of how it works in different people depending on the development or lack thereof in each of our nervous systems.
Now my work needs to focus on getting the word out.
We need more professionals who understand autism, who can diagnose autism, who can provide support in counseling and guidance in helping autistic adults to ease their struggles. This goes back to making people aware that adult autism exists, that autistic adults with hidden diagnoses are more likely to be suicidal, homeless, jobless, be low income, need health care, and statistically more likely to need help with struggles of substance abuse, mental illness, or to need assistance to access help for any of these challenges.

Please feel free to share the “you might be autistic” information at the top of the page. copy, paste, print, give to others to promote awareness of autism in adults.
Please share any information, comments, insights or words here with my permission as long as you do not use them as your own.
Please continue to help raising awareness of the great need for the growing populations of the elderly which will peak at the end of this century.
Send a note to your own local newspaper or magazines, professional newsletters, groups and pages.

There will be so much need for care and insights of all older people.
Knowing of our own autism diagnosis may help so many to have fewer struggles and to live better as we age.
Knowing autistic kids do grow up to be adults will help autistic children today have better lives as they mature.

Please join me in finding ways to bring attention to this need. There are over 5 million adults with autism over the age of 21 in the USA today. CDC and Census information statistics provided this information. ( you can do the math for yourself)

How many of us know we are autistic? I imagine that less than 1/4 of us know about our autism. You won’t find that statistic anywhere. People born before 1980 were very unlikely to be diagnosed with autism, since there was no standard diagnostic criteria at the time. Nobody began to look closely at children with autism until the 1990s.
Today’s understanding of autism is vastly different than it was in the 1990s.
When were you born?

Undiagnosed Autism

and social struggles

go together. There are over 5 million adults in the USA today with autism (age 18 to 100).

Two tenths of one percent of adults in the USA are homeless. ( Gov’t statistics)
Some studies ( or ask a social worker in the field of homelessness) suggest the actual number is much higher.

Long term unemployment in the USA is around 1 percent.

9.3 percent of the population has a problem with substance abuse.

Studies link autism to a high ( up to 36 percent) percentage of autistic people within the socially struggling groups listed above).

Statistics in studies show that autistic people are more frequently victims of crimes.

Autistic people can be prone to trauma/cptsd/ptsd because of sensory differences and struggles to understand many social interactions or situations.

Admissions to hospitals for suicidal behavior/thoughts/ treatment have been documented to be so frequently related to autism that many hospitals now make mandatory testing for autism part of the initial admission procedure for this struggle.

Studies of autistic people related to health and longevity show greater risk for multiple health problems and shorter life expectancy.

To learn of our autism diagnosis is to open new opportunities for self understanding, self compassion, and self care.

Diagnosis provides insights that allow us to use new tools for self care and healing, both emotionally and physically.

Many autistic people struggle with missed or misdirected diagnosis, frequently reporting having multiple diagnoses which had been treated sometimes for years and don’t respond in the expected manner to psychological treatment, therapy, or drugs. When autism is discovered, many of the old diagnoses are no longer explanatory of the struggles the person experiences, autism fits the criteria better. (not always, it is very common to have multiple diagnoses and still be autistic) .

Knowing we are autistic allows us to get help for our struggles in a constructive manner with our self understanding and accommodations for our neurological struggles.

If you are struggling with social problems in any of these ways, or perhaps in multiple ways,
please check out the possibility that autism might be the answer you have been looking for.

Who am I ???

Finding your authentic self after diagnosis

There has been much discussion lately, in the online forums I attend , about masking and finding one’s own identity.
How to drop the mask and be more authentic? How to know who I really am beneath all the adaptive and self protective behaviors I have learned over my lifetime? How do I know which parts are “real” and which parts are camouflage for self protection or ease of coping?

I was at a loss for a long time about these questions. For me a lot of these questions did not apply because as I had aged, I had adjusted my style of dress, my social behavior, my willingness to put up with discomfort, etc.
I had become more authentic to myself for the most part before I learned of my autism.

It might be a process of ageing that we become less willing to put up with social and physical discomfort or meaningless rituals or distressing social situations, or I might have been lucky to have sorted out sources of discomfort and to have allowed myself to discard those things that were most difficult and distressing to me.

I understand the need to sort it all out, and to self accommodate in order to have the best experiences that life has to offer and to eliminate pain and discomfort where we can.

May I suggest we start with the things that we find most difficult and distressing? By figuring out different ways to do things, we can eliminate at least some of the things that are hardest for us to tolerate.

I learned to avoid physical discomfort first. Stopped spending hours on clothing, hair, makeup, and worrying about being “in style” or if I looked right. Flat shoes, loose fitting clothing, easy hair cut, minimal makeup applied only for very special times. Works for me! Even within dress codes, unless a certain specific uniform is required, there is usually some leeway.

I got rid of the scratchy couch that I could not bear to sit on, the bright flickering fluorescent lights. When I lived alone I did not use TV or Radio. I now remove myself to my quiet zone if my husband wants to participate in things that drive me wild (TV and Radio for example).
I have bright clear lighting that doesn’t flicker in places where I need it for reading and close work.
I stopped forcing myself to go to concerts, listening to podcasts or videos, trying to interact in large groups (4 or more is a large group to me), stopped going to restaurants, shopping malls, and other places that caused my sensory struggles to make me anxious and put me in ‘stampede mode”. What was the point?
If things like wedding receptions, anniversary parties, retirement parties, etc send you into panic or meltdown, consider a congratulatory card, note, email, or phone call along with polite regrets.
( you don’t have to explain, just say you are sorry you missed their big day but wanted to send congratulations or whatever message you’d like to give).

I found new ways to get a lot of things done, adapting them to my sensory struggles so that I no longer suffered loud noises, chaotic surroundings, etc.

In replacing those old painful experiences I found joy in solitary walks in nature, taking photographs, doing crafts, listening to my choice of music (peaceful or upbeat and not dissonant, no lyrics since I can’t readily process spoken or sung words), I found the ‘real’ me.

I lost a lot of anxiety and anguish by simply declining invitations to loud parties, noisy social gatherings such as dinners in restaurants, classrooms, malls, etc and substituting meeting with one or 2 people for quiet shared activities.

It may require others in your life to make adjustments too, or you might need to compromise to keep peace, but I urge you to find your most distressing activities and find ways to eliminate them or change them to things that provide pleasure or at least reduce discomfort.

Change clothing, change shopping habits, change the way you socialize or interact with others, change decor or arrangements within your home to accommodate your worst struggles. Many of us have it in our power to make adjustments that can make life so much better. You do not have to do anything one certain way, or in many cases you might not have to do it at all.

Sometimes we need to just stop and consider alternatives. Change can be scary, but taken in little bites, and not all at once, sometimes changes can bring about a lot of relief and comfort in exchange for the pain, anxiety and frustration.

What can you do, one step at a time to remove painful experiences from your life and to substitute or build new and pleasant experiences for yourself?

Millions of autistic adults

undiagnosed in the USA today.

Per the USA’s Center For Disease Control (CDC) there are 5,437,988 autistic adults as described by those being over age 18 upward in the USA today. CDC claims this statistic as 2 percent of today’s population in the USA. Census numbers after 2020 may drive that number still higher.

A notice posted April 27, 2020 claims the CDC has determined these numbers so that states can be aided in budgeting and planning funds, etc. regarding diagnosis and support (“treatment”) for autistic adults. All states now require insurance plans to cover diagnosis and supportive therapies for autistic adults. Children ageing out of the system, which used to close at the age limit of 18, are now going to be supported as adults as well.

The happy side effect of parents of today’s early diagnosed children’s and young adults’ activism ( this was entirely unintentional, I am sure within myself) is the new availability this could give older autistic adults in this country for access to diagnosis and support.
Support plans will soon be in place for adult autistic folks. Will elders once more be overlooked as focus is on the younger generations, with most Americans never suspecting the hidden millions of autistic adults struggling without diagnosis and support that many so desperately need?

Educators of those already practicing diagnosis and those now just learning how to diagnose and recognize autism must learn how autism displays differently in all adults and how diagnosis of adult females may be more complicated than today’s standard diagnostic criteria.

Statistics posted by the CDC show that males ( children) are still diagnosed at much higher rates than females.

There are no known statistics on how many adults have been diagnosed, or the proportion of males to females who have received late diagnosis.

I see the CDC’s post as a ” first light ” showing in the attempts to find diagnosis for all age and gender groups who have struggled lifetimes with autism and never knew, never had help, never suspected.

I have been feeling frustrated and discouraged lately. My personal plans to offer local talks and information to local groups likely to encounter un-diagnosed autistic elders has been completely shut down by Covid restrictions.
Now I am considering a different, possibly more effective approach to gaining more diagnostic and support structure for older adults with autism.
College classrooms are the places that need to offer more information about autism and how it presents in adults and the elderly. Professional groups for individual practices need to be alerted to the presence of adult autistic people. Political entities who plan and portion out those huge budgets need to know about adult autism. The list of places to raise awareness is practically limitless!

As a group, older autistic adults need to speak out about finding diagnosis, and need to bring attention to the need for support, to organize much as the parents of autistic children have.

If population statistics are correct, the adults in the USA who are autistic out number the children who have been diagnosed up to age 18 .

Time to speak up and ask for educated diagnostic and support systems.. Laws for insurance coverage have changed. Colleges and other schools need to be aware and make changes to provide for the future.

Baby boomers will all be over the age of 65 by the year 2030, just 10 short years from now. Will elderly autistic populations get the support they/we will need as they/we age and rely on others for our medical and physical decline as we grow older?

Will young adults “ageing” into the system get the support they need? CDC has taken the first step by providing numbers and an “authoritative” source of information on which individual states will be basing plans now required by law.

Many of us will be watching with interest.
If we are able, most of us ( ageing adults who are autistic, whether formally diagnosed or not) can help raise awareness and place social pressure by making lots of noise to legislators, planners, providers. Call, text, write letters, email, write letters to the editor of your local newspaper, contact local TV or radio outlets…. whatever you can do, we need each other right now.
The demand is there, we know it, but I am not sure that those in the places we need to reach are hearing us. Please do what you can!

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 Emergencies

The importance of being prepared.

I can’t say this is about autism specifically, but being autistic and elderly has made interactions with others harder for me than it might be for some people.

In mid March 2020 my husband had a health emergency which took us to the hospital Emergency Room.

In our state of the USA, Covid 19 precautions had just been enacted.

We were screened for that from an isolated hallway, as well as having to give a summary of what my husband’s problems were. We provided proof of insurance and established that I was his spouse, his representative, and his power of attorney for health and everything else.

I was allowed to wait with my husband while he was seen and tested by many different medical people, until he was finally admitted for emergency life saving surgery.
I was allowed to stay while the operation took place and after, I saw him in recovery, and followed him to his room and saw him comfortable. I saw him again early the following morning. At that point rules had changed for Covid Isolation in Hospitals. I got a call saying I could not return to the hospital to be with him.
I was not allowed to see my husband again until he recovered enough for me to pick him up and bring him home. ( I stayed outside of the hospital, in my vehicle, he was brought to my car in a wheelchair).
We were lucky because he came home alive and continues to be well.

Things like this can happen to anybody and at any time!
Some time ago, we had made each other Power of Attorney and Health Care Power of attorney, filled out a living will making each other designated decision maker/ representative if health care decisions were needed and the individual as a patient could not respond for any reason.
We made our wills at the same time.

Today I see we made good decisions to have these issues settled while we were in decent health, decent mental condition, and not in crisis.
We could discuss everything regarding our health issues, willingness to accept life support, choices surrounding “do not resuscitate” orders, etc. We could decide who we wanted to include in our will, how we wanted our “worldly goods” distributed, make special mention of the family special items and who they should go to, etc.

If you are alone and do not have family or spouse or others to speak for you, it is most important that you have these papers showing intent and giving the persons you trust the power to help you through health struggles if you ever need it. Alternatives would be next of kin, no matter how far removed, or to have court appointed guardians or your individual health care providers making decisions regarding your situation on their own. Didn’t want to spend the next 10 years on life support in a coma? Without directives and representatives, you might not get your way.

If you want to assure your best interests, it is important for you to make those choices and decisions for yourself or have available somebody who you trust , and who knows what you want, to help you.

When I was my mother’s caretaker/ representative and we had to travel, I carried copies of all the papers we needed, as listed above, plus her medicare/medicaid/insurance papers and copies of her social security card, a list of her medicines, her meds for the day, a change of clean clothing and other needs all in a backpack that I could put over her wheelchair handles.
When I had to meet the ambulance at the hospital to have her admitted for frequent health crises, I had everything I needed to assure she got the help she needed and was her spokesperson and caretaker while she was in hospital ( Parkinsons’ dementia, autism, etc made it necessary for somebody to be attendant with her at all times.

The point of these illustrations is that we don’t know what the future might bring, but we can make any crisis we experience easier to deal with by preparing ahead. Please consider how you want to be helped, who you want to help you, and what you will and will not want “done to you” in any health crisis. You will have peace of mind and you and your Representative/Power of Attorney will not have to wonder if they did the right thing. You are more likely to get the care you need if you speak up about things that are important to you while you are not in the middle of a crisis.

Just another set of tools you can use.

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.

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.

Newly Diagnosed

What next?

I was 66 years old when I finally figured out that I am autistic. I had never suspected, never really thought much about autism, except in the way one reads about autism in superficial special human interest publicity pieces .
I had a few general ideas about autism because a dear family friend had a child diagnosed with Asperger’s while our children were growing up in each other’s houses as friends do. I just never saw parallels in the child’s behavior to mine, perhaps because he was a child.
His father is on the spectrum although nobody knew that at the time. Maybe not so coincidentally I found that of all the people I knew, the communication between him and me was perhaps the easiest and most natural I had experienced.

The last job I worked before retirement was as a caretaker in a State run home for children, and most of the kids were autistic. I never recognized myself in them.
I knew I had social struggles, I was bullied at every job I ever had, including the last one mentioned here. But I never associated one problem with the autistic struggles others were having.

I had too much to do in every day life, making sure my home, family, pets and gardens were all taken care of and trying to meet the requirements of working as well.
Every day there were multiple ‘fires’ to put out, crisis after crisis. I was always stressed, anxious, exhausted. Who had time for self examination and introspection?
It was not until after I retired that I began to suspect I had autism. Somebody sent me one of those on line self tests and the results suggested I was autistic, and that I should explore the possibility. It got me curious. No, could that be true?

I had the free time after retirement which had eluded me all my working life, and I jumped into research about autism. After a year of reading studies, autism descriptions, statistics, opinions, and doing every self test available on the internet, and buying a few books with autism basics (and one self test of great depth). I decided that I am indeed autistic. I am fortunate enough to have all the free time that retirement gives you for searching and introspection. If you are working you will have much less time to devote to your search and it may take much longer to work through the idea of being autistic.

The blog tells the rest of my story, right down to my finally being “officially”diagnosed about 3 months ago.

For so many of us diagnosed either by self exploration or “official” means, finally knowing about our autism is a huge shock. The idea we might be autistic means that everything in our thoughts, beliefs, attitudes, and behaviors may change. Scary stuff indeed!
We autistic folk tend to be somewhat rigid in thinking and may not explore again issues that we think we understand. People tend to be less flexible in general as we age. My son says I am ‘willful’. Stubborn old men and women decorate pages of history and legend. It is a stereotype which probably as a basis in some truth.
We may have known life was difficult for us, but unknowingly believed that everybody else had struggles like ours, and in my case I thought a lot of the struggles I had were somehow my fault because so many failed interactions ended up with others telling me I was to blame. I felt inept, ashamed, unlovable, rejected, and I was always anxious worrying about what I might do to make somebody else mad without knowing why or how it happened.

I Was absolutely shocked when I finally recognized that due to my autism I had very few skills and tools to use which others rely on to succeed in life.
But it was not my fault. I had something different in my neurology which did not allow me to see the world or anything that happened in my life the way most people would see and understand it. No wonder my world was filled with pain, failure, rejection and abuse! Nobody knew! What a relief to finally understand why.

The overwhelming relief that came with this revelation has not faded. I am so grateful to know I am autistic because it explains so much about my past and my painful life.

After diagnosis people tend to feel relief, but they also can feel dismay, anger, sadness for what might have been, and a whole lot of mixed emotions come up and need to be dealt with.
This seems to be a common experience among the newly diagnosed older folks. It is as though the experiences of our life until this point finally make sense, and so many of our beliefs about ourselves and others are shifted, sifted, sorted, and at long last understood from a different point of view. Knowing about our autism shakes us to the core and we must re-build all of our ideas to incorporate our new understanding into the way we see our past, our present, and our future.
Since we are older, we have a lot more sorting and shuffling and examining of old issues to deal with. We have so much more experience! This is naturally going to take time and a lot of emotional homework!
It seems to be common to feel confused, angry, sad, upset, and more, sometimes all at once as we work through our past experiences and beliefs and find ways to fit it all together from an autistic point of view. You will probably grieve for the poor little kid who was so misunderstand and often abused. Nobody knew! You will probably be angry at the bullies, tormenters, punishers and mockers in your past life. Nobody knew. You may grow in understanding about how autism had its part in these misunderstandings. Take your time and sort through it all. It is safe now to look back and to begin to find out how most things that happened to you had a connection to autism.
Give yourself time. I am learning every day all of the ways that my autism affected my life, and the ways it still works in my every day experiences. I am in my 3rd year of understanding, with many things yet to deal with. With new understanding comes peace and learning new ways to do things, to take care of my once lost self and to forgive myself for not knowing it was autism. I can forgive the others who didn’t understand too, for the most part. That brings peace instead of anger and pain. Understanding calms many fears and has begun to give me relief from much of the anxiety and despair and depression of the days pre- diagnosis. Things do seem to get better for most of us once we understand about autism. Our struggles are the same but our new understanding gives us tools we didn’t know we had to help us cope and find new ways to live.
I have felt upset and unsettled for days as I worked through certain memories, experiences, and feelings from the past. That’s OK, there is a lot to work through, isn’t there?
The nice thing is that things that had bothered me from the past, which I had taken out of my memories and re-worked over and over for years re-living the pains and trying to understand: these have mostly gone away and are now quiet in my mind and soul, once I saw how autism had a part in that particular incident.
I say this after 3 years of reading, study, and self analysis. It has taken lots of time.
I am only now becoming comfortable with the idea that I am autistic and understanding how much it has always affected my life. I am sure I will continue to learn more for years.

Learning how I struggled, what skills and weaknesses I had within my neurology has helped tremendously. One of the great hallmarks of autism is uneven neurological development. Do you know which sensory input you find most effective and which are your weakest skills?
I learned that I have very little capability to understand visual input. Movies, demonstrations, videos, and the like leave me with very little. I can’t process visual things. Can you? Many autistic people find that visual processing and visualization are among their strongest abilities. Those people use Movies, TV, videos, and demonstrations easily and benefit strongly from using them.
I read and can look at diagrams, charts, and maps. Can you?
Others are sound oriented and must listen and relate to things through their hearing.
I am very bad at processing the spoken word, but I enjoy instrumental music greatly and try to make that part of my every day life. Spoken word processing in me is almost nil, but in many people it is the strongest skill. These folks rely on audio books, Radio podcasts, lectures, and other spoken media as the best way to connect with their world.
These are just a few examples of possibilities for strengths and weaknesses. If you have never given much thought about how you connect with your world, I believe you will find it helpful to explore your own strengths and weaknesses so that you can help yourself succeed.

Self accommodation for your strengths and weaknesses will be evident. Once you recognize your need for quiet for self calming, your need for stimulation through exercise or sports or dance, your need for certain kinds of music, or how much it helps you to wear sunglasses in places where you will be exposed to bright or flashing/sparkling lights, etc, you can see how this self knowledge helps us make adjustments to our every day living arrangements, travel arrangements, etc. Autistic forums are full of insights and helpful suggestions for new ways to deal with autistic processing struggles.

Sorting out communication struggles is more difficult because we have learned so many ways to cope with our struggles, developed such ingrained patterns of behavior and responses.
I think it would be great if all of us as newly diagnosed autistic people could get a life coach or therapist who could help us figure out new ways to deal with our new self understanding and all of the mixed and hidden emotions and behaviors we learned to protect ourselves and to cope with our confusing and painful world.

Overcoming years and years of ideas that might now be changing due to understanding oneself and one’s autism will take time and patience.
Most of all, forgive yourself and take care of yourself. You may have learned from others that you are useless, worthless, stupid, etc as a child and lived a life believing what others told you. Knowing about your autism should put all of that to rest. It took years of adapting and adjusting to survive, it may take a good bit of time to undo all those ideas from long ago and a to put them in perspective using autism as the light which allows you to see your story more clearly now.

I joined a couple of on line forums for autistic people and spent a lot of time asking questions and getting great information. There are years of experience and insight in these forums, and it is all available at home right there on your computer. It took me several tries to find groups which were compatible. Many groups are made up of parents or young people, who tend to have different issues and struggles and different ways of communicating. Don’t be discouraged, there are autism forums out there of every sort, something for everyone. Keep trying until you find a group you are comfortable with!

I got therapy long before I knew about my autism to teach me better and healthier communication patterns and to help me make better and healthier decisions. What is obvious to many people who are neurotypical (NT) ( average not autistic persons) often needs to be explained to autistic persons. Getting therapy was scary but it was the best thing I ever did… It probably saved my life and sanity. I did not know I had options to choose in my behavior because my autistic inflexibility did not let me see it. I had to be taught. I urge you to find somebody to help you understand your options if you feel at a dead end or like you can’t go on. We may have many healthy alternatives that are hidden behind autism and the way it works in our minds.

Keep in mind that you are not alone! There are over a million undiagnosed autistic adults over age 65 in the USA alone. More of us are learning of our autism and gaining strength and insights every day. I hope we can reach others who are still lost in the older generations, I feel hopeful, knowing how much diagnosis has meant to me.

Autism and sensory processing

Texture, pressure, how does it feel to your skin and your body parts?

Sometimes it is not obvious that we have sensory struggles with the sense of touch/feel, yet so many problems in every day life are based in processing touch or feel of textures and issues with over or under stimulation regarding the sense of touch.

The way something feels to us can be one of the biggest hurdles of all to overcome.

Let us start with over stimulation or hypersensitivity.

For many of us bathing is a very distressing experience. The feeling of our skin being wet, or slick with oils and lotions, the feeling of powder slipping and spreading lightly over our skins, or the use of cloths, sponges, brushes, or any of the numerous tools sometimes used during a bath or a shower can cause immense distress. The feeling of the water moving over us as in a shower experience can cause fear, anxiety, actual pain, cause panic and an immense desire to escape the feel. As children, bathing chores are signals to fight against the sensory overwhelm.
Please understand that not only all the ‘feels’ of a shower or a bath are ‘wrong’ or distressing to sufferers, but add in the sounds, the lights, scents and other distressing sensory input and perhaps our resistance is more easily understood and perhaps even cause for a bit of sympathetic insights in devising plans to ‘get the job done’ with least discomfort to the person who must bathe ( shower, shampoo, brush teeth, clean or clip nails, etc.)

Resistance to many situations is probably more likely due to sensory struggles than it is due to deliberate disobedience or obstinancy, or naughtiness. If we are fighting your ‘agenda’ it is more likely due to the sensory distress that your plans for us will bring upon us.

Many autistic people are acutely sensitive to the clothing they must dress with. Seams on socks, cold prickly zippers, sticky labels with pointy sharp edges, garments that are stiff, scratchy, itchy, have seams, are fluttery/noisy, crinkly, too tight in the wrong places or too loose or flappy/flowy- can all cause the person wearing them pain, anxiety, distress, discomfort. No wonder those little kids can’t sit still!!!!!

Many hate the feel of a breeze or wind or water on their faces, arms, exposed legs or torso.
We may hate the pressure of hats or scarves or fear things across our face even momentarily. I remember how difficult it was to wear glasses as a child, even though I needed them desperately. I simply hated the feeling of pressure across my nose and resting on my cheeks and digging into my ears.

Sudden touch, touch of either light or heavy pressure, the feeling of being squeezed or tickled or pinched can send us over the roof with anxiety and fight/flight.
Some respond with relief to overall pressure such as hugs, wedging oneself between cushions or in any small place where we can give our bodies more pressure will be soothing.

On the other hand many will panic and feel trapped or overwhelmed. Trying to imagine Temple Grandin’s famous “squeeze/hug machine” and its use on myself gives me shudders and makes me feel panic.
Weighted blankets work for those who may seek sensory pressure, as will compression clothing or bandages…. the idea of any of those will send others ( like me) into fight/flight at even the thought.

Issues of touch can be tied into proprioception and struggles in processing what we feel. I must touch a wall or rail as I go up or down stairs to ensure I know where my body is on that staircase. I rely on feeling the pressure of my body weight with my feet firmly on each step before I proceed to the next one. If I walk from a room to another, my hand touches the furniture and the wall to make sure I am negotiating the space safely. I was repeatedly corrected to “keep your hands to yourself” or “keep my grubby hands off the wall” or furniture because those who cleaned behind me found my hand and finger prints annoying.
I have a poor sense of where I am in relation to my location in my world at any time and my sense of touch helps me keep upright and from crashing into things.

Texture of carpets, blankets, clothing, upholstered furniture all caused problems for me when I was quite small. I remember one house we lived when I was age 1 to almost 3, in which the living area included an ancient wool carpet. I refused to play on it repeatedly, much to my mother’s annoyance since I always moved to the edge where the cool smooth wood floor was not prickly and sharp. I was then in the traffic zone and underfoot. But I had solved the issue of the painful carpet. The sofa we had at that time was covered with tiny tufts of nylon and very bristly to the touch. This too caused me distress, and it was difficult to make me sit on that thing in a dress or a pair of shorts/sun suit… I didn’t mind when I had on the winter clothing which protected most of my skin from such insults. We had that sofa for years and I remember the color, the rows of bristles of the fabric, and the smell and the feel of it with no pleasure! I don’t believe others experienced that sofa the same way.

For me one of the worst things is sudden touch from strangers. Don’t get me wrong, I dislike touch from those close to me too, unless I have time to prepare for it.
( slow touch can do this too- I can’t stand the idea of massage… a stranger touching and rubbing, pressing, etc etc on my body is just unimaginable horror, even though I can imagine the horror part very well. )
I suspect that some of that comes from the association of sudden touch with motherly spankings and siblings’ torment such as tickling and pushing associated with aggressive treatment of my very early childhood right on through adulthood. “conditioned response”? But still the immediate first reactions to avoid touch could be because it is simply too alarming. I am afraid something I don’t understand is going to happen before I have any idea what that ‘something’ will be. Usually it was some sort of discomfort, so that sudden touch is first alarming. I don’t have time to prepare for whatever is coming. Maybe it is instinctive. I doubt many people welcome sudden touch.
My reaction is simply on the more extreme end of things. I startle very easily and am constantly hyper vigilant to avoid situations where I will be startled or grabbed, probably because of my hyper sensitive initial reactions as a child and the pleasure so many people over the years have taken in stimulating that response for their own purposes?

Texture of foods and the way they feel in ones mouth is something that is repeatedly discussed on the online forums I participate in. So many people avoid foods because of the texture, rather than the taste… too sticky, gummy, too hot or cold, too greasy, crunchy, stringy, slimy, gooey,chalky, chewy, lumpy, grainy, runny, chunky….

You name it, somebody somewhere in these forums have lists of foods they don’t like because of the way they feel in the mouth or going down one’s throat. It would be interesting to take a poll to see what foods repel the most of us and why. For many autistic people sensory issues can interfere with eating and cause dietary problems, failing to get proper nutrition due to avoidance of things disliked due to texture or feel. ( add the way things look or smell or tastes to be avoided and you can see how distress over the way a food feels can contribute to the struggle )

Understimulation of the sense of touch can also cause problems for us. Many seek pressure, seek sensations of hot, cold, or cause pain simply for the experience and possibly for endorphins released due to some pain inducing behaviors.
Self injury is one of those frequent autistic behaviors that are often not discussed on open adult forums. There is a deep sense of shame and self blame, fear and anxiety, and emotional pain surrounding the person who seeks sensory stimulation by self injury, and most are afraid to discuss this issue for good reasons. The social stigma of such damaging behaviors is real and strong, and I believe many are afraid to bring this issue to the forefront or ask for help because of shaming and blaming that goes along with it.
In the near future I will be discussing this issue involving the sense of touch and feel in greater detail.