How is it Different?

today, comparing “how it is” with “how it was”

We need to do better. I grew up in the 50’s and 60’s and nobody knew about

autism. I was raised with physical punishment and shaming, a harsh critical judging hand

or voices if I “blew it” when growing up. Spilled milk, bumping furniture or accidentally

running into other people, dropping things, mistakes in judgement or expressing “inappropriate”

thoughts or behaviors, using certain words, tones of voice, looking people in the eyes (yes, I come

from a culture which said it was insolent of a child to look at an adult when spoken to, especially

when scolded (“don’t you look at me like that!”)

Anything I did or said or didn’t do, I was locked into a ‘system’ that looked for errors and was eager to shame, chastise, scold, scorn, hit and hurt. Those are my strongest memories of my childhood. If there was love or compassion, it certainly did not register. Was it them or me?? Or both?


Is today’s child any better off?

Early diagnosis could be so useful! First the child is forced to go to compliance classes where they learn everything they do is wrong and that they have to tolerate everything any adult does to them, and taught that their only escape is to comply. They learn to be eager to please in order to avoid the constant pressure and distress and get the rote ‘treatment’ over with as soon as possible. Kids undergoing this “therapy” are resigned to their fate. There is no escape, no comfort, no way to avoid any demands. They learn to endure, to abide, to wait until they receive directions before they choose to do anything at all because that is safer than what happens if they don’t do that. Do kids like this have time to explore their world freely, to have new and exciting experiences, to try new things, to get stimulation and input from things that are of deep interest to themselves? Or is today’s therapy all about making the individuals ‘fit the mold’ just as I was at home and in school so many years ago. I don’t think as much has changed as it might seem at first.

I worked as a volunteer in a resale shop a couple of years ago. On a quiet day when nobody else was in the store, a young boy around age 10 came into the store with his grandma. He had his hands in his pockets, was rigid with tension and full of anxious movement.. he began to walk fast through the store, exploring without ever touching a thing.
Grandma called after him. “Tommy come back, stay with me or I will never take you shopping again” She scolded and warned him all through the store, giving similar threats. We will never do this again if you don’t “……” this minute! I could see he was anxious and also curious about what was in the store to see. He clutched a wallet in one hand. He had money to spend! I assured grandma several times that he was fine, that I was sure he would hurt nothing, that he was being a responsible citizen and I started helping her see him in one of the side rooms, hands still in pockets, just examining something on the counter. She sighed and said, ” it is so hard, he is autistic!” Did she expect he had grenades in his pockets? Did she think he was going to assault or rob somebody? What was so hard about his behavior and his presence in this situation? I could not see her point and told her he was doing just fine. I made sure he heard me defending him, too. 😉

After he discovered a little box of fossils, he wanted to make a purchase. She must have reminded him 3 times to look me in the eye. She seemed to despair of his behavior and told me he had an obsession over rocks and fossils. ( how trying! that happens to be one of my own passions). She was appealing to the wrong court. 😉
I asked her if he had ever been fossil hunting at our local park, where there are many interesting specimens to be found. Grandma had no idea. I asked to talk to the boy for a moment. He sat rigid on the steps nearby waiting anxiously for grandma to finish her own shopping. I sat a couple steps below him and asked first,” is it OK if I sit here a minute and talk to you? ” He said OK. I asked him if he might be interested in going fossil hunting at the quarry? Did that sound like fun? He said he would like that..
I told him I wanted to leave my name and phone number with his grandma so they could arrange with me to go fossil hunting with him and whatever friends or family members wanted to come along. He thought that was a fine idea.
I went back to grandma (who knew me from previous visits to the shop although we are not actually friends) and explained that I was a fossil collector too and how I would enjoy taking Tommy and whoever else he wanted to bring on a fossil hunt.
Evidently he had not gone on a fossil hunt before. The family instead was trying to discourage him from bringing home nasty, dirty fossils and rocks and trying to get him to do something productive and meaningful instead, maybe lessons on a musical instrument or summer camp for example.
I gave grandma my phone number and email along with my name and asked her please to pass my invitation along to the family, telling her the boy had already confirmed to me that he would like to do this.
Maybe that was not the way to go about issuing an invitation. I am not great on protocol of issuing invitations. I never heard from them, and never saw grandma or grandson in the shop again.
I wonder if the boy will ever get encouragement to feed his passionate curiosity. I wonder if he gets enrichment in any way besides whatever is convenient for the rest of the family. I wonder if he is told over and over “you are autistic so you have to do this ” make eye contact” etc etc etc .

Pointing out his autism to everybody and making it the focus of his presence is not any better than the labeling my family gave me of incompetent, stupid, mean, thoughtless, clumsy, etc etc etc… only now there is the added stigma of saying he is autistic AND all or any of those things.
What good is early diagnosis if the outcome is just the same as it was for me all those years ago when nobody knew? I see very little difference.
The only advantage with early diagnosis might be that the child could defend himself by saying “i can’t help it, I”m autistic”… which may breed a whole new set of behaviors and problems.

We have to do better with the tools available to parents with young autistic kids today. Kids need to learn they are cherished and valued and appreciated, not just labeled and seen as something that “needs work” to be OK and right in and of him/her/them selves.
How can we get families involved in such a way that the autistics in the family are every bit a part of the family, every bit as cherished, every bit as respected and cared for?
I am sure there are families out there where this is happening, and I am sure that there are many caring parents working hard to give their autistic children every advantage in a loving and supportive way.
But I think there is something deeper, something that needs to be found in raising an autistic child. That is to see the individual behind the struggles, to speak to them and explain everything possible regarding their autism and their care, their strengths and how plans are made to support and address their weaknesses and to tell them when new things are being discussed, including them in the decisions made when changing anything about the child’s situation, conditions, struggles, strengths, school or medical programs, etc.
It goes back to “nothing about me without me”. Not all children will be ready to share feelings, ideas, thoughts, and desires or give other input, but please understand the well known phrase “nothing about me without me” is applicable to family matters and matters relating to an individual in a family situation too. First and foremost I am a person. I may be your child, with a child’s understanding of my world, but I need to know I am important to you, and that you care, too, about my feelings, thoughts, wants and needs.
I will not be likely to understand, I will be frightened, I will fight, I will resent, I will not ever feel loved, cared for, or appreciated if I am discussed like the family cat or the houseplant on the shelf, with no acknowledgement of myself as an individual with thoughts, ideas, feelings, and opinions of my own. If I am suddenly thrown into new situations, classes, treatments, therapies, or programs without discussion, explanation, warning and preparation. Inclusiveness begins at home. Is your autistic child really a member of the family? Or is he or she first and foremost a burden, a pain, a responsibility, a tragedy, an annoying intrusion, useless, valueless, disappointing, and inconvenient? What does your child believe about himself and where do you suppose those ideas came from?

Communication

What to do when you have no words or voice?

What if you don’t read, understand my language, or speak my words?

“I think my cat is autistic”. There are memes, maybe a book or title of a short essay, comments from many of the people in some of the online forums I visit or participate in.

Our cat was a street kitty, we think he was abused before we found him abandoned at about 4 months old and brought him home. We believe he was abused, certainly he had not been handled by humans much, perhaps he was even punished for approaching people (boisterous innocent kittens will climb up a human as if the person could not feel those tiny claws… ouch!). Our new cat hid and was very fearful for over a year, and one day he finally approached us as we sat quietly in our living room, and crept very carefully onto my husband’s lap. First time he had approached us wanting to be with us.

We have had him for almost 9 years now . He has taken on the role of sherriff/prince/enforcer. He knows the schedule.
If I am not up by 4AM he stands outside the bedroom door and calls, or pounds on the door with his front feet until I am up and moving.
Next, to the bathroom, where he gets a drink from the faucet in the sink while I do essential things. Then I open the door to the stairs which lead to our breezeway.. If I don’t do this quickly he pounds on that door with his front feet too.

Then I prepare coffee and cat food. I must do the cat food first! Then about 3 hours later the dog comes to get me and I feed her, first giving her meds wrapped in cheese. The cat is there to supervise and to step up as I fold the dog pill in the slice of cheese. He always get a piece of cheese too. ( be fair and not favor one family member over another, right?)
When the dog goes out, it is “play with the kitty time”. As I close the door on the dog, the cat comes towards me sideways on tiptoes, with his fur puffed up in joyous anticipation. We play with the laser pointer until the dog barks to come in. If I ignore “play with the kitty time” I am harassed, pestered, and finally bitten on the ankles if I do not comply … lets play, its time! No mercy until I get the pointer. My fault for starting that particular routine.

The cat guards the house faithfully all day, going from one room to another to watch out the windows, and taking random naps when exhausted from his duties. He will come to tell me if anything is amiss and pester me until I am fully alerted to whatever is wrong. He has alerted me to cats, dogs, and people in the yard or approaching the front door. He alerted me a month ago when a small motor from a tumbling rock polisher in our basement burned out and was smoking.
I was exceptionally stupid that time and it took persistent and vigorous attempts to alert me before I finally understood something was seriously wrong.
I followed him from my computer desk at the back of the house to the basement stairs where I could finally smell the “electric” burning smell. He may have saved us from fire!

The cat has a thyroid condition and eats huge quantities of food, drinks tremendous amounts of water every day. His dish is in constant need of refilling. He will pester me until he gets his food dish refilled. If I ignore him he continues to escalate his “attention getting” behaviors. He calls first. Little chirps, followed by meows and on to full out yodel. If I don’t respond, he comes to me and rubs around my ankles with his face. He stands in front of the computer screen. He bites the edge of the screen, stands on the printer, begins to throw things off the desk, and if all fails, he bites me . That always gets my attention. I am a very oblivious person when locked into research or other computer activities.

The cat stands guard when I nap or when I take a shower, and when it is bed time.
If I don’t follow routine and go to bed at the usual time, I am pestered, my ankles get swatted and nipped, and I am ‘herded’ toward the bedroom. Routines must be enforced!

Things that deviate from normal upset him. Visitors are considered intruders until he has met them many times and they have proved their non threatening status.

What does my cat have to do with autism?

You can see several parallels… his anxiety of changes from regular routine, his desire to avoid social interactions with strangers, I could go on, but that is not what I am actually trying to point out.
If the cat tries to get my attention and can not do it, if his attempts to communicate are ignored, he will ‘escalate’ his provocative behavior until I recognize he needs or wants something from me. Something requires my participation to answer his needs. If he is thwarted and frustrated because I don’t respond in the way he needs and wants me to, he finally bites me in order to get my attention and response.
Here is the message.
Can we compare the behavior of a cat with the behavior of an autistic person without words? How many times are we stupid about seeing needs and wants of that individual because they do not say plainly in words what they need, want, feel, think?
If a cat can have such understanding and work hard to communicate, why don’t people understand how desperate a human without words might be to obtain similar interactions with those around him/her/them? How frustrating and hurtful to be dismissed as stupid, unthinking, unfeeling? How long before despair and resignation and hopelessness set in? How about anger and frustration?
If a person resorts to escalated behavior including throwing things around, beating on things, or biting themselves or others, maybe the reasons lie in the fact that their other ways /means of communications are not being sought or heard or acted upon. Think about that.
Maybe its time to listen, to watch, to stop dismissing behaviors as random or annoying, or something to be trained or punished away, and maybe we should be attempting to find new ways to communicate.

If my cat is working so hard to communicate, can you doubt that the non-speaking autisic person in your life is trying to reach out to you? Isn’t it obvious that this must be true?
Dismissing persons without words as stupid or treating them as if they are also non-thinking or non-feeling is a serious mistake.
So called “intelligence tests” are meant to measure the responses of people who have words. It is a serious mistake to assume that because one does not have language or may not be able to speak or read, one is not intelligent, does not think, and does not feel.
It seems imperative to me that any and all methods should be used to find ways to communicate. Not just to force speech or train word responses, but also to look for ways to seek behavioral signs and to listen and to watch, and finally understand and then respond to the things that non-speaking persons may be trying to tell us.




Double Empathy

whose point of view measures autistic responses?


This is extremely important! https://wordpress.com/read/feeds/92352784/posts/2592725199

Quincy describes the problem very clearly.

Countless studies have been done over the years supposedly measuring autistic subjects responses to emotional situations, to situations regarding “theory of mind” and to measuring empathy and the like. How do we measure emotional response? Can it be done scientifically? Some of the problems regarding the design of “tests” and “studies” of autism are subjective to the views of the testers.
Autistic adults on the “elder autism” forums I attend discuss tests about ‘cold autism’. ‘Lack of insight’ , “Lack of empathy” knowing these tests are completely inaccurate and scoffing at the claims made. Nothing about us without us… time for science to take a second look at some shoddy and poorly constructed “tests” of autistic subjects.

My personal worst gripe is the test that supposedly measures emotions viewed in photographs of eyes. The photographs used in the 2 tests I have viewed use actors and people “pretending” the emotions that are being portrayed. The human “pretending” to feel certain ways is not likely to express themselves exactly as a person who actually feels the emotions. There is a social bias in this test which is outrageous, since cultural traditions and training also have a part in human facial expressions.

The list would be a mile long if we named all the false conclusions “scientists” have presented as truth and reality. Please read and understand what is presented here.
I am Grateful to Quincy for permission to share. His insights and eloquence here are unparalleled. Read it all!

There is an old joke about a scientist who cuts off a frog’s legs, one by one, saying “jump frog jump” and each time the frog jumps with 3, 2, 1 leg, he measures the distance and records it. Then he cuts off the 4th leg and says “jump frog jump”. The frog does not jump. Scientist writes in his little record book “frog with no legs can’t hear”. Think about it.

Who benefits? Follow the Money!

and “nothing about us without us”


I will be attending my first Developmental Disabilities conference at the end of the month. In preparation I have been looking at the state’s setup for supporting autism. Most states now have some mandates requiring insurance coverage for diagnosis and treatment of autism in adults. Requirements for coverage differ from state to state.

The state I live in (MIchigan) has established a “state autism board” to guide and direct autism support activities.
I was not the least surprised to see many persons highly involved with autism, ABA therapists and consultants, Insurance Navigators, and some very active in Parent groups like Autism Speaks. Oh my, can you spot what’s missing???
All of the people profiting from autism treatment and insurance benefits, not a single autistic person among them. !!!
Who gets all the money pumped into the “support” (financial) of autism from government ( national, state, local) ????
Maybe those groups??? hmmmm???
Who decides how that money will be spent? Who decides what treatments and practices are most “beneficial” and to whom ???

( hint: it is probably not anybody who is autistic).

New topic same subject. There are almost no therapists working with adults, and doing adult diagnosis in this state . There are a few who don’t take insurance, cash only. Very few and far between. I wonder why some enterprising medical college, hospital or similar institution of knowledge and learning does not set up an adult autism clinic?
Why are teaching colleges not offering instruction using latest information about autism diagnosis for adults as well as children?
There are hundreds of thousands of autistic baby boomers who remain undiagnosed and who could benefit greatly from therapy for emotional as well as physical struggles and addressing trauma from years of struggles without knowing diagnosis.
Now that most states mandate insurance coverage for autism diagnosis and treatment (in adults too, yes!) I hope to see great things come of the newly available money to be made .

Gerontology and all support structures will be dealing with autistic adults (and autistic adults dealing with them), In very large numbers as boomers all will be over 65 by 2030.

A wise medical school will begin to train specialists in adult autism to meet a need which is going unfilled and is becoming in demand as the older generation learns about adult autism and wonders if they too might be autistic.


Persons thinking ahead will see that beyond the ‘baby boom’ generation there are generations of already diagnosed adults reaching maturity, needing supports, needing help adjusting to adult life, needing therapy and who will eventually also be ageing into a steady stream of autistic adults needing professional care and attention, diagnosis and support of all kinds.


There are only a handful of clinics and diagnosing entities focusing on serving adults in this country. One I know of in Illinois has such demand for services that people make appointments for diagnosis and subsequent treatment up to 2 years in the future… people are standing in line for services.!!!!

Who will see the need and fulfill the potential?

Students considering medical and support careers would do well to consider some branch of autism specialty which actually uses today’s information to diagnose and address autism struggles.

( have you noticed that ABA is not scientifically proven, only results based, and many autistic people both those who have “been treated” and those who were lucky enough to escape due to old age- are beginning to revolt on behalf of children undergoing what is being exposed as damaging and even traumatizing “therapy”?)

Diagnosing neurologists and psychologists specializing in autism are needed desperately.
Hospitals, private practices, psychologists and therapists already in practice could add adult autism specialties to existing services.
I can not understand why the medical communities, usually so quick to see profit in certain branches of medicine, have let this one lapse????
Watching with interest. The next few years should be very informative.
Will autistic people benefit?

Autism perfectionism

autistic self blame, autistic depression, autistic guilt

Or why I must always be right.

I grew up in fear of failure. I grew up feeling unworthy of love, feeling the anger

of my family, my peers, my teachers. I grew up feeling a desperate need to appease and please.

If I made a mistake, i felt absolutely pounded and persecuted and hounded by whatever that mistake

may have been.

Family especially, Repeatedly throwing my failures in my face and reminding me what a miserable crumb of an excuse for a real person I was.

Family structure was built around how bad I was, how wrong I was , how every aspect of me was undesirable, disgusting, inept, a failure. There was no excuse for my wrongs. I was the worst person on the planet. I wanted to die. Every night from about the age 8 until I was in my late 20’s I went to bed hoping and praying I would not wake up and have to face still another day in this hell. I feared all of the constant corrections, blame, anger, frustration, punishment, criticism, bullying, threatening, and humiliation due to public castigation (at school, church, and at home, the worst was to have other “good” people observe and approve the punishment, corrections, humiliations, etc.

Perhaps there was praise. Perhaps there was approval, perhaps there was encouragement. I missed it completely if there was. I think there might have been.
I clearly remember my sister( I must have been around 12) telling me that when she asked my mother why she complimented my drawings, my mother told her it was because “I needed it”. Clearly sister resented that I could gain praise for something and sought to negate any positive feelings it might have brought to my mind. To point out how little I deserved anything because I was bad and wrong, the family’s assigned role. I did not deserve positive attention of any sort. If I got it , that was a lie. Well, it worked. Family dynamics were a mess. I learned from that not to trust anything good i was told about myself. I wonder if that is why praise did not register? ( If I was praised or if I sought praise or recognition at all after that?).

I learned years later that I was the family’s “focus” or “scapegoat” whose failings were blamed and punished so that the rest of the family was free to deny their own weaknesses and shortcomings .

In such an atmosphere I developed not only fear of criticism, but huge self contempt and self blame. I knew I was different! I knew I could learn, and I spent almost all of my time striving to “get it right” and to be right, in every situation, learning every fact, whatever I did… I was afraid to fail. If I suspected I could not be perfect at a thing, I refused to even attempt it. To fail would bring shame and painful criticism down on me.

I read and posted in an earlier blog about how deeply I was moved when I read about the relief that older autistic adults expressed when they learned of their autism diagnosis. It was so good to know that all your struggles and pain was not ” ALL OUR FAULT.” What a relief! This was expressed over and over again. Having been given labels all our lives as failures , it was such a relief to know it was autism which played a part in our struggles.

I could not fail. I lived with huge anxiety all my life, fearing I might make a mistake, make a wrong choice, make a bad decision, get less than a perfect score on a test, be wrong or bad in any way. It hurt too much. I became reclusive and extremely watchful for any signs of persecution, mockery, blame or criticism. I was angry and defensive. I was hypervigilant to make sure I was as perfect in every statement I could make about any topic. Mostly I did not try anything within the realms of social behavior, because by age 10 it was evident that I could do nothing right. I did not even try.. learning was my only strength and I strove to be right in all facts and information . Sharing information was the only way I was able to interact with others. ( see how autistic rigid thinking worked here?) Nobody spotted any of this, it was deeply embedded in the dysfunction of my family and my incorrect autistic understanding of the world and its ways. I understood what was wrong with me in every possible way and understood it deeply. I felt huge shame and guilt for being such a failure. I could not even get it right in a family , (who sometimes said said they LOVED me!!! what a crock, I couldn’t believe that!!! ) how could I possibly function in any way outside the arena of failure? That was then, today I understand how it all happened.

Fast forward to today, when I tried to find information besides the article about the huge relief older adults find in autism diagnosis.
I wanted to see what discussion there was about the huge burden of guilt that so many of us evidently carry. I was at first surprised to find article after article and page after page about the burden of guilt that parents carry for their autistic children. How they feel guilty over everything about their child’s autism, about how their child’s autism affects them. How horrible their lives with autistic children have been, or still are.

I found one study done around 2017 that decided that autistic children did not feel guilty because they had, supposedly, no theory of mind… not a thing more.

Knowing and being told repeatedly as a child that I caused my parents such misery, that I was the problem in the family, that I was wrong and bad in every possible way, that I was the one who needed “fixed”, that I was a huge pain and trouble and cause of disgust, anger, and annoyance, pain and loathing…. supposedly I did not feel bad about that. Supposedly I had no idea. ( shaking my head)

Parents of autistic children, I am sure, go through every possible emotion and have many struggles. Many of them are autistic or have other issues to contend with as well. Life offers struggles for everybody. I understand now what happened all those years ago within my extremely dysfunctional family as well as in the greater context of my autism diagnosis. I see much more clearly now how it all happened. Nobody knew!

Wouldn’t it be great if we could find ways to stop the blame and learn how to work together to find the best possible ways to make life better for all of us?

In my day, nobody knew! Not my autistic mother, who went to her grave never knowing of her autism, nor my other family members, nor almost everybody in my level of society at the time I grew up.

I like to think that today’s autistic children have somebody who explains everything to them,
who encourages them, who accepts them and appreciates their best, and who lovingly and patiently guides them toward greater skills and successes.
I like to think of today’s autistic children growing up knowing and understanding their own strengths and struggles and being understood, educated, and supported. Maybe there are more parents who don’t blame the child, parents who are also supported, who understand and approach with humor, patience, and kindness instead of blame and anger.
I like to think many of today’s autistic children are likely today to have better success and a better start in life. I hope so. Knowing about autism at an early age seems like such a useful thing to find tools and techniques to better succeed in the world.


Parents: don’t just talk about your child, talk to them! Tell them they are not alone, that you are in this with them and that you as families will figure out ways to make it by working together.
Explain everything down to the very smallest detail. Explain why. Explain how, explain when and where.. explain what you understand about struggles and overcoming them. It is crucial to your autistic child’s understanding and success.

Parents: Don’t talk to others about your child’s weaknesses and failures anywhere that they will overhear and misinterpret how difficult life is for your whole family at times. Your child did not choose to be autistic, it is not his or her fault. He or she struggles with all of it, too. Struggles in life are part of living. Autistic struggles are part of many people’s lives. Making this the responsibility of the person with autism is blaming him or her for a choice they did not make. Seeking miracles or expecting behaviors the person is not capable of only adds to the shame of the blame. “if only” . Living in wishes , dreams, hopes, of what might have been if only… can’t help.

No answers, no solutions, don’t blame, lets all work together to find the way to a better life for all of us.

Advocating for Late Diagnosis of Autism

Maybe this is going to be a rant?

I have sought out any and all information I can find about being old and autistic at the same time.

Last year I read a 2015 book advocating for medical and support professions to get ready for old autistic people entering the system. Autistic people will be needing more support as we age. Much suffering and distress can be avoided by teaching doctors, therapists, and support staff about autism and how it affects a potential subject in care for any or many reasons. Autism masks symptoms, causes diagnostic and care struggles, can be misinterpreted as many other things to the detriment of the person being diagnosed or treated, and the extreme difficulty( sometimes) of the staff serving that autistic person. The entire “baby boom” generation will be over 65 by 2030 and many have not been diagnosed with autism, diagnosis as we know it today simply was not available when we grew up.
Each chapter was written by a different author. I was shocked to read the chapter by a diagnosing psychologist complaining about all the old people coming to him for diagnosis. They were getting along for all these years, what could diagnosis do now? He seemed to be of the opinion that nobody could possibly want such a label and that people in pursuit of diagnosis wanted to get on the dole or somehow cheat or work the system.
I was shocked, especially since I thought the book was about finding and diagnosing the elderly, and supporting older autistics.

I decided the man was not capable of seeing or understanding all of the personal benefits (not monetary) to finally knowing and being reassured that yes, I have different neurology, and all my past failures were not my fault, was good enough.
Evidently he thought we had made it this far, we did not need to bother him with requests. HE was the professional, how dare we self diagnose and seek confirmation.
I got the idea that (like the neurologist I consulted for diagnosis) he was willing to ‘teach us a lesson’ by denying we are autistic, only he, the great and mighty “professionally trained ( most of them in 1980 and many earlier when autism symptoms were barely recognized and contained at most a half chapter in their text books) could possibly give a valid diagnosis. The anger and frustration was palpable.

That particular chapter brought back a lot of distress from my first attempt at professional diagnosis when the doctor deliberately destroyed me emotionally and mocked me and gave me multiple serious psychiatric diagnoses which subsequent diagnosis by a psychologist with 40 years of experience removed from my record, explaining that all my neurological tests did indeed show autism, the neurologist simply did not know much about autism as we know it today. How many of us are going through this? How many have been given spiteful or ignorant diagnoses … its that old complaint about being a square peg being pounded into a round hole.
My diagnosing psychologist said ” to a hammer, everything looks like a nail”. If you don’t recognize autism through training and experience, you tend to give other diagnoses you are more familiar with and which partially fit what you might already be familiar with. OK.

That was incident one and two… I am learning there are many out there who are actually against adults seeking diagnosis. I am learning that many “autism advocates” and even more autism researchers see diagnosing adults as a waste of time.
Many autism advocates believe adults are a finished product and there is nothing that can help them, no reason why we should waste research dollars or any other time and effort on adults. We are already “in the system”.

Some in institutions or care facilities, some at home with ageing parents who might also be autistic and not know that. Some of us are living in group homes, some of us are trying to get on with our every day struggles, wondering why we seem to be such miserable failures where so many experience success, and wondering why, why ,why we can’t accomplish what seems to be so easy for others. Many of us are on the streets with substance abuse problems, many are in jail, many are just barely surviving when, learning of our autism, might instead be thriving.

Yesterday I read a blog I follow, opening the page with interest. I have followed this teaching and researching professional and found his perspective on autism always interesting and liked the analytical way he addressed many issues. I didn’t like this blog topic!

In his blog the professional teacher/researcher pushed his belief that it was a waste to include older autistics in research, in advocacy, in diagnosis, or in finding ways to make our lives better.
He said the funding for autism could not bear the strain and that older adults could not benefit, should not benefit… all should focus on autism in children.

I am not advocating taking anything away from children. I am not wishing in any way to stop funding for this fellow’s own research ,(which I suspect is the primary reason for his blog post, he is feeling threatened in his pocketbook regarding his own work).
I don’t know a thing in personal experience about the struggles for funding, but I do understand that for those who seek , finding funding is hard fought and there is never enough money for researchers in almost any field.
I am seeing the newly formed autism groups fighting amongst themselves for newly available government dollars and suspect there lies “cause” and effects. Follow the money! Who benefits?

I don’t know how to seek out funding, I am a one person campaign, and I am only one person writing a blog and hoping to give talks, run a Facebook Forum or two to give insights into what I am learning about my own autism and that of others. I truly believe knowing ones autism diagnosis can be life changing. I wish for others, the peace of mind and better life that I got when I finally understood about my own autism.

I am no threat, I am simply trying to understand and to learn new ways to live my life of struggles and hoping to help others do the same. I profit financially in no way and any activities I participate in are funded only by me. ( just to make this perfectly clear)

Maybe more individual people raising their voices and sharing information, agendas, thoughts, and ideas will add value to society in ways that need no big government funding .
( consider planting thoughts as seeds in minds everywhere if you are up to it!)
Ripple effect from hundreds of small pebbles thrown into the pond can spread as well as one big rock… maybe better.
I don’t want to be anybody’s enemy.
I want others like me , who spent my first 65 years never knowing why I was such a miserable failure, why I could not do so many things with even a moderate bit of success, why I struggled to have a social life, why I could not communicate with others without making them angry….
I needed desperately to learn about the fact that I was/am autistic. Knowing has made all the difference.
Surely older people deserve insight and peace of mind?
Surely there is room for new voices from another aspect of autism to be considered and entered . Surely we are on the same side as autism advocates???
Or are we?

The best way to work

Autistic strengths and weaknesses of function
Find the best way to understand everything!

I have been spending time examining the ways I learn. I am beginning to understand all the best and worst ways I deal with the world.
I spent more than 65 years not knowing that it was near to useless to attend a lecture or live demonstration of any technique or process. I simply can not absorb the information presented.

I spent more than 65 years never understanding that what I heard and saw in lectures, live demos, and other audio or visual presentations such as television, video, or podcast would be wasted time for me.

I spent 65 years wondering how I could be so stupid, and how come I didn’t
seem to “get it” or understand what was evidently plain to others. Any social interaction or gathering was nothing but confusion, chaos, misunderstandings, frustration, and disappointment or humiliation or both to me.

I finally found out , through neurological testing once I knew of my autism diagnosis, that my sensory processing in all things audio and video, and especially in a combined format was only 30 percent or less functional. That is very very low! Finally I understood.
Try this. put on a pair of sunglasses, tear a tiny hole in a paper napkin and cover the lenses of the glasses so that you can only see the bit of light and image through the hole. Then put on earplugs, the kind that muffle all sound. Now go watch a movie or a video you have never seen or turn the radio on and listen to it without raising the volume . How much did you understand?
That is what most of my life experience has been like! No wonder I ‘didn’t get it’!

In order for me to learn, and to understand, I must read the information and look at diagrams, line drawings or simple photos in order for me to truly absorb and process information.
I will always struggle to understand real life interactions with others, or anything I observe (think of baseball games at the stadium, a concert or an opera, a lecture or appearance by somebody you admire) Real time is always too fast for my processing. It is how my neurology works.

Do you know how the neurology of your autistic children , autistic parents, spouse or friends works best?
Like my parents, peers, siblings, bosses, co workers, and teachers all those years ago, are you thinking I am being stupid, obstinate, willful or deliberately mean when in truth I do not understand what is expected of me, why, nor understand what might have just happened to create the upset situation I have somehow caused?

Neurological tests show I have high average intelligence… it proves I can learn.

But I also have real definable handicaps to understanding most things around me that happen “in real life” or “in real time” around me. Think of how this affects me every day. Interactions at the grocery, post office, doctors office, with neighbors, spouse and family, any ordinary interaction for you is filled with social hazards for me!

Sensory processing is how we receive any information, make contact with our world, or understand
what is happening around us. Sensory input is how we interact with others, with how we learn.

I have become convinced that knowing my strengths is the best way for me to proceed from here forward in light of my autism diagnosis.

Now I wonder about all the ways other autistic people process information. It seems that most autistic persons are highly visual. Movies, live demonstrations, videos can all be helpful. If the person has audio processing struggles, or is not visual, but is able to process audio spoken or sung words, etc best, learning techniques can be adapted. Not only learning, but what of every day life? What if the person whose best strengths are visual could use visual reminders of things needing to be done, of schedules or lists or to learn new ways to do things? How can this strength be put to work for better successes in every day living?

What if the person whose strengths lie in hearing and audio input could use those to learn, to deal with lists and reminders, to find new ways to do things? Recorded information, books on tape, audio reminders on phone or hearing/listening devices would boost learning and performance. How else could tools that aid audio processing help every day?

People whose strengths are in physical performance, or related to scent, tactile information, or other ways of processing the information accessible around them could all be aided and supported better by finding ways that utilize their strengths.

I am especially concerned with children being forced to participate in meaningless rituals of social and traditional ways of ‘teaching” and other interactions, when in many cases very little benefit is to be gained. I struggled through out grade school. I was constantly scolded, punished, chastised for not paying attention when indeed I was trying very hard to understand what was being presented. It was demeaning and frustrating and I simply did not understand why I could not listen and learn. I was a very unsatisfactory pupil, and very unhappy almost always. I was completely lost! And I was trying so very hard to be good, yet getting scolded and demeaned almost continually. Nobody knew!

I got very little out of school until I was in 6th grade and the lecture method of teaching was augmented by assigned reading. I finally was able to read the assigned chapters and understand what all of the spoken lectures and demonstrations were about. I finally began to do well in school classes. Because my visual and audio processing lags so, I was never good at and never will be good at social interaction on a face to face, ‘real time’ basis, nor on the phone…… but because I get most out of reading and writing, I can still have a decent social interaction with people on the internet or by email. We can exchange ideas and information because I can process what I read at my own speed and do not make others or myself uncomfortable with my odd reactions, expressions, appearance, or easily misunderstood demeanor or emotional or flat expression in my spoken words. I do not get anxious to respond within moments to spoken requests, questions, statements, etc. I can take my time to understand the words in print, and to formulate my responses in print as well. Perfect media for my situation and particular strengths and weaknesses.

I urge parents to look deeply into learning the best ways to reach your child. The same for spouses, caretakers, teachers, and others interacting with autistic folk. By changing the methods you use to communicate, teach, interact, express yourself, you may find you change the attitude and outlook of the autistic person/s in your life. Find new ways to do everything , keep trying until you get positive responses.
It will mean all the difference in both your lives to find the best ways to make the “real” world’s input make sense and to share information.

Masking

sorting it out, or trying to: random musings


I am reading more on my autism forums and blogs about masking. It has been confusing me a lot!

I am reading declarations from people swearing they will no longer be masking. They will stim in public, they will be their autistic authentic selves at all times and in all ways, loudly and proudly. “throw off the mask!”

wait a minute… really? I understand that masking is done to gain social acceptance… that it is done to ‘fit in’… things like wearing things that are the same as everybody else at the office, wearing ( for women) specific styles of makeup and doing hair and nails in conventional ways to be seen as ‘normal’ and become socially acceptable… forcing oneself to be careful to have manners and try not hurt anybody’s feelings, to respond in kind if asked to participate in social gatherings, group activities, etc etc. Many of these things are very difficult for autistic folks, and seem to be harder for us than those with neurotypical selves. Have I got it all wrong?

I suspect that a good many people who are not autistic struggle with doing all of these things and with “playing the social game” as well.
Why else would there be all the cartoons and comments about wanting to get home behind closed doors and take off your work persona along with the office clothes or uniform, slipping into comfy clothing or PJs all of that. ????????

At age 68 I have very many habits deeply ingrained. I have had a very difficult time sorting out my own “masking” which I am assured by others is being unhealthy and somehow morally untrue to my autistic self hidden deep inside. I can’t find that me.
I did ” play the game” (and mostly failed anyway) when I needed to and I dropped most of that once I left the world of the office behind.
Late in high school I did try to use makeup, wear appealing clothing, spend hours doing my hair – at least off and on. My attempts failed, and I went back to wearing cowboy boots and jeans for the most part, and spending more time with my horse than with people.

Things changed mostly around 21 years old when I had a boyfriend who pressured me to be more fashionable, to do things a certain way, to wear certain things, to change my basic self to make him more satisfied with me as a partner who brought admiration and social status to him by looking or acting certain ways.
Of course these were HIS ideas of who I should be. Being trained since infancy to appease and perform for praise and to avoid anger and punishment, I worked very hard at it all. I had chosen the wrong partner.


Subsequent marriage and then later divorce from that man, and a load of good counseling on making healthy choices and learning to be self assertive, that all went away. It took years !
I had spent so much time trying to please others I did not have a clue about who I was or what I wanted.

I gradually found myself, and married somebody completely different. My partner of 40 years supported me in being the ‘real’ me right from the start.
I stopped dressing to please others and began to wear clothing that was comfortable and didn’t hurt. I have not owned a pair of high heels in 40 years. My feet are so grateful!
I stopped doing my hair and makeup and stopped worrying about the latest fashions.
I found something that suited me.
I stopped going to social things and started finding delight in nature. In essence I found myself. Years ago.
It took quite a while to realize that I had developed confidence in my own choices of how to appear and how to behave in any given situation.

How much of ‘masking’ is due to our lack of self confidence, our lack of self knowledge and self understanding in the rush to fit in and please others? I wonder if this is just one more thing I had to be taught because my autistic rigid thinking did not let me see alternatives until somebody else pointed them out?

After thinking it all over, I suspect I don’t have much masking left in me.
I have no desire to openly stim in the ways that I did as a child. I have changed and adapted stims over all these years of life. Why should I go back to awkward and difficult behavior that caused me to be even more socially isolated? Don’t all people grow and change and adapt? Why is that so wrong?

I have no desire to aggressively proclaim myself as “different” and wear yet another “social uniform” representing another group of angry people seeking attention by “in your face” attitudes.

The strident calls of “unmasking” and demanding to be accepted no matter how far afield a person dresses, behaves, or self decorates, etc do not mesh.

Human nature is attracted to those who are similar and rejects those who are radically different (in most cases).

I have no gripe with the way anybody else wants to represent themselves, but if I walk into a formal situation wearing a diver’s wet suit instead of traditional formal dress, should I be offended if people avoid me and look at me askance? My reading of some of these loud opinions on the forums is that I should be angry not to be accepted as myself no matter how I present myself. Really? I think that might be a tad unrealistic.

Maybe I misunderstand it all. In any case it is only my observations and construct from my own
” old lady ” perspective.

I speak for nobody but myself in my limited understanding of so much of the world.

Anger and strident behavior do not seem to me to be likely social attractants.

One side of the group autistic mouth proclaims and demands and the other side laments lack of friendship, finding few who willingly interact and respond.
Do what is right for you.

Autism Co-Morbidity

What does co-morbid mean?

Clarifying a definition of comorbid.

In following discussions on my favorite autism forums I often see somebody’s post saying
” autism is comorbid with depression” or they will name any other diagnosis and say “autism is comorbid withthis or these other diagnoses. This is so confusing and shows me that the person making the statement does not understand what comorbid means.

Comorbid simply means that the other diagnosis is present in the same person … autism with diabetes, autism with bipolar, autism with anxiety, or autism with depression for example. Both diagnoses are present.
Diabetes comorbid with depression, anxiety comorbid with hairy nose syndrome (I made that one up to make a point)… can be comorbid in an individual. It simply means the diagnosis of each is sharing the body of the individual.

It (the term comorbid) does not apply to the diseases themselves, it applies to the person who is diagnosed with them.

It is not about interrelation of diseases or their actions upon each other, comorbid means they share presence in the same singular body/person.

There is no connection between autism and those diagnoses, they are simply present in the same person.
Autism does not cause these shared diagnoses, and it is not a feature which is always present with the other diagnosis .
Autism is sometimes present in people who have certain genetic or neurological syndromes, but the definition of comorbid only means that the different diagnosed syndromes or diseases, neurological conditions, mental illnesses, etc are found in the same person. Co morbid= shared within the same person .

In any one person’s body any diagnosed conditions will be comorbid. This does not mean that one is a symptom or caused by the other and the shared diagnoses are not common to everybody with autism or any other diagnosed condition.

I am aware of perseveration in my repeated explanations. I am not sure my explanations have been clear enough to help others who might be confused about comorbid’s definition to understand.
I have been very frustrated to see the continual discussion of ” comorbid diagnoses” where comorbid is misunderstood and used to mean something entirely different. I wish I had included this in my original glossary of commonly used terms surrounding talk about autism. There, I feel better now.

Autism and friendship

Social struggles are one of the hallmarks of autism

One of the most important diagnostic elements in obtaining an autism diagnosis is social struggles.

Difficulty with human relationships and struggles with communication are both things that need to be present in any person for diagnosis of autism.

DSM 5, description of autism, the diagnosis manual guidelines used in the USA, defines several different ways a person may struggle with relationships and communications.
To receive a diagnosis of autism, a number of specific struggles must be present.
Use your search feature to look up specific DSM V descriptions of all the ways an autistic person can struggle with social issues and communication.

In other words if one does not have social difficulties, one will not be diagnosed with autism.

This being so, I continually see threads of discussion on autism forums I attend, asking how to make friends, how to find a partner to love and share life with?

I have struggled with these too, when I was younger. It breaks my heart that so many of us feel this so deeply, and it is completely understandable. To want companionship and shared affection is human nature.

Being autistic myself, I have had a lifetime of social pains, disappointments, misunderstandings, crushed hopes, trampled dreams, and horrible memories of failed relationships. I suspect this is human and all people can probably relate to this in one way or another, not just those who are autistic.


On the other hand, I also have had a few lifetime friendships and have now been married for almost 40 years. Because I see so many people sharing their pain and struggles in relationships and friendships, wishing to do better and not knowing where to start, I have been giving a lot of thought to the few successful relationships I have had over time.
Maybe there are things within these successful experiences that could be used or adapted in other people’s situations to find friends or attract a mate.

What do all of my successful friendships over the years have in common? First and foremost, we have shared interests.
We share information, enjoyment, and activities surrounding a common passion ( special interests!).
We are peers from the same economic status, similar educations, and have somewhat similar outlooks on life, or we are willing to tolerate, support and respect each other’s differences.

We were local to each other at the times our relationships formed, so we had easy access to each other for interaction.
I met each of my good and true friends while following a common( shared by the other person) special interest.
That gave us something in common to talk about and to interact with , also gave us the opportunities for other activity planning around the common interest. This seems particularly significant to me.


I retired 7 years ago to a new community where I did not know anybody.
I tried to join a couple of interest groups but found that in both cases, the members and I had little in common. Both were groups whose basic life outlook differed from mine and whose socio-economic standing was far different from my own.
In spite of that common interest, no wonder I could not find anybody to relate to!

I joined a couple of facebook groups online which exchange discussion and information about one of my favorite activities.
A few local people from the facebook groups suggested getting together to do that activity together.

Some of the people I met were not very compatible, and i did not see them again, but a handful of them were. We found so many things we shared in common, not just the special interest, but our lives, our outlooks, even similar disabilities. Amazing!
I now have a small group of local people who share my passionate interest and who I can meet with when I choose, and with the person or people I choose… whether a large group or a smaller more personal group.
It has taken 5 years, but now I almost always have an activity to share and people I feel comfortable to share it with.
Having that common interest and basic social background seem to be the key. I can be as active as I want, they know me and accept me for who I am.
I have never experienced having a group of friends to do things with before. It worked for me. Maybe it will work for you too.



Because autistic people like lots of detail, I will talk about a few things that I have learned ( the hard way!) which don’t work.
I looked for others on the fringe of the group, the outsiders or the “odd ducks”. I get along best with others like me.
I did not attempt to chase a friendship in a family group or to follow the group leaders and social high status people of the group. I learned not to try to be a part of the “in” crowd , in other words.

I have seen some males do odd things in search of romance. They will inevitably pick the “hottest babe” in the group, set sights aggressively focusing interest on her alone, and be disappointed if she is not interested in return.
If they had looked around them they would have seen lots of average, woman on the street , sometimes chunky, funky, interestingly dressed , bold or timid women watching from the sidelines. Get real. Most of us are not fashion models, women or men! ( and I don’t mean to be exclusive of any group/groups/gender or non gendered people seeking companionship or love, I am just using as examples of experiences from my own long ago past) .
Don’t look twice at the #1 pick from the fantasy movies or books, but real life people of your own social status and physical type.
Find somebody who is real. Hormones are funny. Think with your head. Women do this too, and will sometimes chase a high social status man not at all compatible with her own status or physical type in the same way…. wondering all the time what they might be doing wrong.
Take a realistic look and try to discern fantasy from reality.

Funny, me the social failure giving relationship advice. I have to see the irony in all of this. If there ever was a social failure for most of her life, its me.
I did finally get some of it right, the results speak for themselves. I’ll never be a social butterfly, a politician or a diplomat. But I am not so lonely nor do I feel as defective and as much of a failure socially. The best news is that things can change. We can change the ways we go about things, learn new ways to react, interact, new ways to do things. This goes for social struggles too.

I learned about the acceptability of being squeaky clean and showing signs of good old soap and water. No need to mask and use makeup, fancy clothes you don’t feel good about, no extra adornment if you don’t like it. Just be good and clean… that is attractive! I learned the same about wearing clean clothing, and about basic manners, and am getting better at conversation now I am aware enough to practice good manners in conversations, learning social cues about when somebody is bored, when I am talking too much, not listening enough, etc.
I am sure it all takes conscious practice for something that might be instinctive to some. Harder work for us but maybe worth it. You will have to decide for yourself how far you want to go with socialization and “how to do it”.
I somehow missed a lot of the basics, having nobody to explain them to me all those years ago.
I wish somebody had sat down with me even as an adult and talked to me, talked to me about all my social weaknesses so that I would have been aware enough of them to have done something about practicing social skills and learning about them… but until I learned about my own autism at 65/66 and had discussions with so many others with similar struggles, social interactions were just one more thing I did not know that I did not understand!
I am trainable! ( that is one of my standby mottoes which has stood me in good stead).


I keep going back to this point in my blog, I recognize it.

” If you are raising an autistic child, please explain simply everything!”


Explain what to do in social situations, how and why we do it. Explain what can happen in every situation you can think of and talk about unexpected outcomes, handling awkwardness, apologies, explanations, manners, what to wear, what is appropriate, what is not in any situation. and WHY.
The more you explain, the more understanding cooperation you are likely to receive, and the better your young one will be prepared for the realities of being an autistic adult in a social world.