Communication Justice

Autism, Stigma, Ableism new ways to address old problems.

I am noticing an uptick of the words “Communication Justice” in comments within papers and articles posted across the internet. I had to look it up to understand the full context.
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The concept goes back to the “nothing about us without us” concept which is discussed in one of my early blogs. Stigma is real and when people learn of our autism or see us struggling in one way or another in general social situations many to most tend to judge quickly and dismiss anything we may say or do as having no basis, relativity, consequence, or truth. We are ignored or our comments condescended to, others simply working around us without finding significance or the ability to relate to our input.
This is also called “ableism”, assuming we could do it, should do it as others do and ignoring us, shaming or blaming us for being different, and mentally/personally, expecting us to conform to their “norms” and dismissing us from any specific participation or interaction, rejecting, ignoring our input or viewpoint or considering it not valid, real, true, or relevant, etc.
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All these forms of prejudice are something most of us have experienced frequently.
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Communication Justice attempts to help us be heard and our input considered valid. A paper or article created with communication justice in mind contains input from those affected by the subject being discussed. It weighs with the outcome of conclusions drawn and takes into consideration the input of those of us discussed in the article, study, papers, etc.
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Words and concepts change around autism as society changes and language evolves.
I try to keep up with it all and to share it here since the folks who visit here are usually older adults who need valid basic information from a reliable source when they begin to suspect their own diagnosis, going through self discovery and attempting to obtain diagnosis, or recently diagnosed with ASD and trying to sort it all out.
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If you would like me to address a specific struggle you are having while working to gather information and sorting it all out, please send me a message or make a comment. I’ll see what info I can find to share right here. We are all in this together!

Recent autism diagnosis and Imposter Syndrome

Why am I questioning my diagnosis?

Imposter syndrome is common among recently diagnosed folks, as well as those who are first beginning to recognize their struggles might be based in their neurology. They wonder if they fit the criteria for diagnosis, they wonder if there must be a mistake, if the doctor is competent, if they deliberately hid or exaggerated their struggles or answered test questions correctly , completely, or misunderstood context /meaning of certain test processes, directions. We have so many questions! Once we get diagnosis, we often wonder, “can this be right”? “is this true?”
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Seeing ourselves and our lives from this new perspective alters absolutely everything we thought we knew, understood, believed, thought and gives us answers to a lifetime of “whys”.
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It is usually a relief to learn that everything, every struggle, every failure in our lives was not “all my fault” but instead a sign of having a different neurology which causes struggles “average” or “normal” individuals simply do not have.
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Along with this, we carry blame and shame and lots of scolding and punishment for “failure to perform as expected”. We could have done it if we had tried harder, we were being lazy, deliberately rude and cruel, we were shameful and bad people because we could not/(would not) do what was expected of us in so many situations growing up and all through our adult lives. We were shunned, mocked, bullied, shamed, blamed, often punished, sometimes brutally, for our failure to perform as expected.
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We have had those ideas thrown at us and pounded into us (metaphorically or even physically) since we were infants. We have struggled and tried so hard and nobody believed that this was true. Suddenly understanding that we were right all along, that life has been difficult, painful, and that we have struggled and tried so hard in so many ways over a lifetime is usually a shock. We know it, but to have these struggles finally confirmed by others is like culture shock. We see everything differently. It is a lot to sort when we get to doing emotional homework and seeing almost every painful incident of the past in light of our diagnosis. It was not our fault, nobody knew, and so much was due to misunderstanding and skewed neurological performances…. it was ASD (and our other co diagnoses sometimes too) working behind the scenes.
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Nobody Knew!!!!

WE re live so many painful events of the past, suddenly see “why” we struggle socially, “why” we can’t seem to do so many things that others appear to do with ease.
There are years of accumulated events we must look at and understand through this new lens of information.
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I am here to explain that “imposter syndrome” is part of the processing of all this new insight.
WE try on the new definition, look through newly informed eyes at different parts of painful struggles of the past. Suddenly we may understand “what happened” and get one of those wonderful “aha” moments when a bit of information clicks and we suddenly “get it”. What a relief!
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Expect emotional storms, learn all you can. Ask questions in reliable places such as autism forums where there are lifetimes of experience to explain, inform, suggest, and support as you begin this new part of your life and find understanding of yourself, your lifetime, your neurology, your gifts and your struggles. There are many great resources today in the form of books, blogs, podcasts, scientific studies, autism online pages, forums, videos in various places all around the internet.
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Expect the sorting process to take time, do your best self care as you work through it, emotional storms will be less if you are healthy, fed, hydrated, and rested. You will have more resources to draw from when the going gets tough.
Its OK to feel every emotion as you work through it all, likely you will experience grief, sadness, anger, resentment, feelings of helplessness, unworthiness, relief, excitement , intense interest and the insatiable desire to learn as much as you can about your own neurology and how ASD applies to yourself.
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If you have formal diagnosis, try to get your evaluation summary in writing. It outlines your worst struggles and best strengths and can be very useful for self-accommodations going forward.
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Welcome to the new world your diagnosis /self identification opens up to you, welcome to self understanding and better understanding of all the “whys” of a lifetime.

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As you make self care and self accommodation a priority, your life is going to get easier and better in many small steps.

Best of all, diagnosis taught me I was not the “only one” but that there are many others “out there” who understand. We are not alone.

Autistic Regression in adults

Failure to perform as expected. Its not unnatural and you are not “broken”.

This is at the end of October, 2025. I am seeing more and more posts about “autistic regression” in adults.
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Once again the expectation of performance and failure to perform is being pushed as a struggle, a trial, a measure of fitting in. If you don’t perform there is a problem!
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As infants and children we are measured by our growth and developing physical abilities, weight gain, ability to sit alone, to roll over, to walk, to talk, and shortly later our ability to use the toilet, to tie one’s own shoes or to ride a bicycle, etc.
As children we are generally forced to participate in nursery school (for many) daycare ( for many) and school of one sort or another. These generally group all children together and social behaviors become more important, obedience, ability to absorb information presented in various ways, working together on projects, playing interactive games requiring cooperation and focus on a common goal, and other skills are gained at this time. Many ASD kids find much of this a struggle, along with sensory struggles. Such participation does not come easily but requires conscious effort constantly.
Kids will come home exhausted and depleted physically and emotionally because their struggles with their neurology requires more effort to perform, to fit in, to get along, to live up to expectations. Kids come home and melt down, lock up, freeze, hide, get physically sick, often when parents expect them to change gears and perform interactively with other family members or help in household chores, etc. There is not enough time to “change gears” Do you remember this from your own childhood?
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We may force ourselves to endure bright lights, loud noises, distracting activity, smells, the closeness of others, etc. because it is expected of us, but it takes a toll.

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Fast forward to most “work” environments. We still find we struggle to fit in, to tolerate many social and sensory struggles and try to perform as expected.

Once again the struggles are there to change gears from workplace overwhelm to home’s demands. We push, push, push to fit in one more thing, to accomplish one more goal, to finish one more project. Can you see how self care is lacking in this story all along?

This may take a toll in our health both mentally and physically, with kids developing emotional and physical symptoms of the distress that such programs cause. We are sick more often, we may be in trouble more often, we may miss more school or work days due to upset, illness, etc. But we did it/ do it because we were expected to perform. Most of us try so hard!
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Just because we forced ourselves to perform at these levels and tolerated such situations as those at school, office, factory, or social situations such as parties, loud get togethers in public places, does not mean we did it easily. We didn’t then and we don’t now. Our neurology has not changed. For most of us we have adapted more ways of coping.
We may not have put together that each time we went to a family function we developed headache and dizziness or vomiting and had to remove ourselves to a quiet place. We may not have associated our exhaustion or deep sadness, anxiety or easy frustration and explosions of anger as caused by our environments and the extreme amount of energy and concentration it may take for us to “perform as expected”.

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I see the idea of “autistic regression” as being yet another way that the “normal” world is measuring us and finding our performance lacking. I see this term used by many “therapists” in discussion of autism in videos, papers and articles recently. Pointing out our “regression” is showing us how we fail and finding how to make us more “normal” to “help” us fit into society’s boxes and get us to live up to the things we “used to be capable of”. WE are expected to suck it up and force ourselves to continue to try to meet expectations at any cost to ourselves.
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Many of us have forced ourselves for years to perform as expected and eventually we find we do not have the emotional or physical resources to perform “as usual”. Things may change over time to make what was once possible more difficult for us.
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Take a moment and think about how life changes.
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We age and are not as physically fit to be able to do that hard physical labor. We have changes circumstances , have moved household or moved out on our own, our support systems changed, we had children, take on pets or projects, our partners joined us or left us, our job description changed, new work partners or procedures were set in place. So many changes added but still expected to “keep performing”????
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There are a thousand reasons why we suddenly just can’t cope, can’t live up to expectations of performance in one or more areas of our lives. We have suddenly taken on one or more things “too much” and gone into overload of our neurology. We may have unhealthy ways of coping (overeating, smoking, drinking, drug use for example). WE may never have learned how to pace ourselves and how to take care of our own needs because we have been so busy trying to keep up.

We may not have learned how to balance our lives . When the cup is filled, it overflows and things don’t function as well. When you have taken on too much, you will find life is “too much” too.
We may never have got the tools we needed for healthy living, healthy communication skills, ability to say NO and negotiate with others, compromise, or self-regulate. These are things we can learn and change. But for our health and our sanity, not for the purpose of adding “one more thing and ending up with overload, meltdown, shutdown, breakdown, lockup, or loss of health and important relationships, property or self.
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“Autistic regression” is not a failure of our neurology, but yet another way for others to tell us we are failing. “you did it once, why can’t you do it now? ” , is often part of others’ complaints once we get diagnosis and self-understanding, and we begin to do self-accommodation.
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The things we force ourselves to do to please others which also cause us anxiety, distress, emotional or even physical pain, sensory struggles, are things we may need to compromise on.
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What we are dealing with when we “regress” may actually be normal adjustments that any overtaxed, overloaded, distressed, and or anxious individual would make. Slow down, lose some of the extra commitments, find new ways to do old things. We grow and we change and not all changes from something we “used to do” to something else are negative. “regression” is a sign that changes are needed, and not a sign that you must try harder. “Regressive” traits are the consequences and signs of overload, of overwhelm, of trauma and anxiety, of ageing and abilities which change naturally over time (we are not the same at 40 physically as we are at 20, not the same at 60 as we were at 40)

Don’t let somebody else measure your performance and tell you that you have regressed, rather check your lifestyle and your goals, your abilities and your health, set priorities and refuse to do things simply to please others that take a toll on your mental health, your physical condition, your stress and anxiety levels.

You are the best judge of what is right for you.

Others’ demands are first on the list when they tell you that you are “regressing”.

When you hear that phrase being applied to yourself, take a close look at your life and see how you can adjust it to avoid burnout, meltdowns, shutdowns, and lockups. “Regression” of skills used comparatively against us is a demand for performance.

Some loss of abilities and skills or performance levels as we age are inevitable.

Make sure that you are performing for your own needs, wants, expectations and desires and not striving to meet goals set by others in their own interests.

Forcing ourselves to perform simply to please others is not necessary or healthy.
Self care always first. Its a lot to sort.

Autism diagnosis anniversary

Coming up soon

For me, diagnosis changed my life enough that I remember the date and circumstances around my diagnosis clearly and I celebrate it each year. At the end of this month ( September 2025) I will celebrate my 6th autistic anniversary.

Knowing about my autism has changed my life for the better. Self understanding was something I had missed completely all those years before and it has taken emotional homework to sort and understand so many things from the past.

I am still learning about my own neurology and still trying to find ways to adjust my life to make struggles easier.
It has been hard to accept that I really am impaired in “normal” every day activities by my neurology. I find myself facing grief off and on when I struggle with some aspect of daily living where autism causes misunderstanding or makes it difficult to do something others do with ease. Todays news and strife adds to the emotional pain and like everybody else I feel particularly helpless, vulnerable, afraid of what lies in the future.

I try to remember to do my best self care, not to feed myself on social media’s shock and fright tactics (such things raise viewership and media does not hesitate to feast on horror, fear, distress, etc all over the world to gain customers).

I am trying to keep my life balanced and put myself on a diet of doing things that I can control, things I can do in my own little sphere to make my world better. In order to do this I must accept that I can’t control much, that I am not helping anybody by becoming dysfunctional through distress and anxiety induced by the feeding of my fears through social media/the news/ etc.

I can keep informed with just a few minutes of reading daily, I will no doubt be informed if the world is ending and somebody will tell me what to do (as if we could do much in that scenario).

I have been reading a lot of history over this past summer and have come to recognize that this sort of thing goes on in every generation. There is always a battle of “sides” of understanding… it seems to be human nature. There is always violence, mayhem, killings, sick behavior by individuals, just as there are always others who struggle to do good.
That all seems to be part of human nature.

I can look back in my own life, and I can look into the stars in the night sky and see how insignificant my own personal struggles are in the scheme of the world.

Very few humans are recognized beyond their own lifetimes, the rest of us experience life and all our struggles in different ways and pass on without fanfare in the world scope of things.

Do what matters most to your own life, your own loved ones, your own little place in your group, your community, your personal sphere…. you can safely leave the rest of it to history and world processes that will go on forever.

Thoughts on my own progress/process. It has been almost 10 years since I first began to suspect I might be autistic. It has been since 2017 that I began to try to learn more. I got diagnosis almost 6 years ago and began this blog in 2019. I find I am in a different position now and I have less information to share. Today’s science has uncovered many things and has clues to so much more but it is very slow going. Current trends in politics are very concerning and I am watching with strong interest. People who believe in science and finding and documenting facts are working continually for better understanding and I think funding will continue to be available from those who are financially able and who are concerned. Beyond that it is not within my sphere of control and I must rely on others who have the powers I don’t.

“accept the things you can’t change, change the things you can, and find the wisdom to know the difference” is something I am trying to live by. Learning what we can control and what we can not seems to be a key to mental health as we all struggle with conditions in the world today.
Find ways to give yourself what you need, what your loved ones need, what is good and right for you and yours. The rest is just details.

After Autism Diagnosis

( or did they tell you that you are not, after all, autistic?)

So many adults finally find a professional who is willing to do an assessment and go eagerly to find out if they are indeed autistic. Many wonder if they will be told they are autistic, that they are not, or that they are “something else” instead.

My first attempt at diagnosis I was labeled with 5 other serious diagnoses to explain my test results , and was mocked, ridiculed, and scolded… I had a family, married with children, had worked jobs. Autistic people did none of those things! It was obvious immediately that this doctor ( a neuro psychologist) had not updated his knowledge of autism since his original college classes back in the early 1980s. Although his staff had told me he had plenty of experience with diagnosing autism in adults and with adult women, he told me at the evaluation summary “autism just doesn’t come into it” and that he had never diagnosed a single adult with autism in his career. This spanned about 40 years of doing neuropsychiatric evaluations, up to 350 per year and he told me he had a couple thousand patients under his supervision. Statistically 2 to 3 percent of those individuals were likely autistic but he never saw one!

I can’t stress how important it is to find somebody who has actually had a lot of experience with diagnosing and working with autistic adults. If I had insisted on talking to the doctor and asking how many autistic individuals he had diagnosed over the years, this whole failed attempt at diagnosis would not have happened.

The experience of “missed” or “mis” diagnosis is quite common among adults seeking to learn more about their own neurology and to find out if they are autistic (here in the USA, and likely many other places too, from reports I have read)

What has been interesting about this failed attempt was that the test results and written evaluation summary from this experience has been very useful for self understanding.
I took the test results with me to the second attempt at diagnosis with a very experienced autism specialist. He showed me in the test results how it showed very clearly that the doctor who did the testing simply was not familiar enough with today’s understanding of autism to recognize it and instead had given me labels he was familiar with.

The summary showed that I was highly gifted in a few areas, adequate in a few and abysmally poor in performance in other sections of the testing. In other words my performance had peaks and valleys, showing clearly my uneven neurological development. Charts of average/neurotypical people generally are similar in levels of performance throughout the test sections, sort of little hills instead of the very sharp contrast of performances in different part.

So I got my diagnosis from somebody who actually understood my autism, but that first neuropsychological test report revealed many strengths and weaknesses of my autism and my neurology.

I have been able to use the results for better self understanding and for making self accommodations. Although it was very upsetting at the time, it has turned out to have been useful in several ways and I have referred to it repeatedly in the 5 years since.

Since this (misdiagnosis or missed diagnosis ) happens often among those adults seeking testing, I wanted to bring it up.

Don’t worry if the person doing the diagnosis says you are not autistic, there may still be very many ways the evaluation and summary can be useful going forward.

If their explanations answer your questions, maybe you really are “something else”.

If you are certain you are autistic and your assessor does not have understanding of today’s definition of autism, you can still use the test results to help yourself make adjustments to your life. You can continue to seek a competent and up to date evaluation from an autism specialist.

Finding a competent assessor for adults is a struggle today. That is why so many groups online and in person accept self identification of ASD.

More about diagnosis aftermath soon!

Autism diagnosis process

What happens during the Autism assessment?

People seeking diagnosis and anxiously waiting for that far off appointment often wonder what is going to happen? What is the procedure that is followed? How are tests performed? What are they looking for?

Autism diagnosis is based on traits that have been observed since its discovery, and the testing procedure, standard measures of performance and understanding are based on behavior rather than neurological testing. That seems odd, doesn’t it, considering that we know autism is based in neurological function and sensory processing struggles due to uneven neurological development that happens before we are even born. Some autistic like traits may be observed in individuals who have suffered trauma or have been in severe accidents, but these symptoms are due to “something else”. ( although autistic people can also suffer trauma and severe accidents).
So criteria was set out for diagnosis and the guidelines for diagnosing autism which have been the standard for many years are laid out in the Diagnostic and Statistical Manual of Mental Disorders (now version 5) published by the American Psychiatric Association. The tools used and the standards are still based in discoveries and assumptions of early days in science’s understanding of ASD. You can find the entire section about autism diagnosis and the actual wording of the whole Autism description and testing online. Try using ” DSM5 American Psychiatric Autism” as a search phrase.

Behaviors are observed, tested, and categorized/rated. There are several categories of behaviors that are looked for and those being tested must meet criteria from each category in order to be designated as autistic.

To be diagnosed as autistic we must have struggles with communication, Social struggles, and rigid thinking with repetitive behaviors, (sometimes called the “diagnostic triad” of autism”
and today many diagnosing professionals also look for sensory processing struggles.

Most diagnostic processes begin with an interview that determines if we are candidates for autism testing. Most people receive “Comprehensive psychiatric evaluation” Tests may also include neurological testing, special tests designed to indicate possible mental illnesses (many individuals also receive other diagnoses or are already diagnosed with other conditions)
Tests are in the form of booklets/ paper, some are spoken questions and answers, some may be administered online using computer prompts and fill in style responses. There are basic questions about health and history, where you will be asked about your childhood and any early traits of autism you may have shown while growing up. Some facilities/ testing procedures ask for input of somebody who has known you for a long time , parents give input for small children, with older adults, their parents may have passed, they may not have a spouse, etc. or anybody who can speak of long time behaviors. this is not a rigid requirement in order to obtain diagnosis but is considered helpful to know. Some testing is done with tabletop manipulation of pieces to duplicate a shown image, some testing may require us to draw and image we saw previously, or to indicate which image most closely matches the one we saw.
I found the testing fascinating and was very interested in trying to figure out what the tests were trying to discover. We may be asked to draw a face, clock face, any other thing, we may be asked to play “word games” or to do things with numbers.
Don’t worry if you do not do well in some sections of testing, failure is just as informative as wild success, because it is all meant to understand how we think, how we process information or sensory input. Tests reveal strengths and weaknesses and those who are autistic frequently show extreme performance or extreme under performance in various places of the tests because of our uneven neurological development. The test is not “pass fail” but designed to show what our neurology excels with and what are true struggles for us. There is no shame in struggling with any test section or request to perform. I gave up completely on a couple of them, my brain simply refused to “go there” and what was asked of me was impossible for me to perform.
Thats OK, this is exactly what testing is supposed to reveal!

Testing and interviews usually last from 2 to 8 hours, and we may be asked to come in for a preliminary appointment interview and to come back for a diagnosis summary.
If possible, ask for a written diagnosis summary with test results. These can come in so handy for self understanding and for making self accommodations. Sometimes printed results take time to assemble and you may have to be patient or make inquiries at the office to make sure you get them, although in some cases, you are given these as part of the “follow up” appointment. Do not be afraid to ask for explanations or to ask questions.

If you are anxious before testing, or at any other time, do tell them, they will understand and try to help you get through it all.

Autism for beginners

basic info all in one place

Somewhere around eight years ago I began to suspect I was likely autistic. I had learned about autism when television began discussing it on daytime talk shows my mother was watching back in the late 1960s and the 1970s. I was born in 1951.

I thought I knew what autism was and that autism did not apply to me. (In those years only the worst struggles of autism were recognized).

By 1980 when autism was being added to the DSM I was fully adult, recently divorced and getting long overdue therapy to help myself after a lifetime of emotional pain and bad decisions. Getting therapy was the single best thing I ever did for myself.

Flash forward to 35 years later. I was married with 2 adult children, I had worked with autistic people, one of my best friends had a child with autism who was always in and out of the house with the rest of our kids, In my last job I had worked among autistic kids in a group residential/therapy home 8 hours a day, 5 days a week. I retired after over 50 years of struggles with keeping jobs, being bullied in every one of them. I still thought I understood autism.

Then in 2012 0r 2013 :
I was watching a TV documentary with my adult daughter one evening ( something I never do on my own but she finds this activity companionable). The program was about autistic kids in high school in Great Britain. I began weeping, shaking and sobbing and saying
“it was like that, I was like that” repeatedly.
Understand I almost never cry! It was soul shaking and totally unexpected.

Daughter consoled me and said “maybe you are autistic, too, maybe you should check it out”.
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I began to think that idea over but it was probably a year or two later when I began to actively search out information about adult autism. There was little information online or available in books, almost everything was aimed at parents with autistic kids. There were all sorts of claims about autism causes, cures, therapy, etc. and lots of mystic, magical thinking too. So confusing to sort it all out! I am a voracious reader and spent hours each day trying to learn all I could for better understanding. Today I still have a strong, fixed interest in autism and continue to search for new information daily.

I did find a couple of blogs and a couple of books but it was so very frustrating trying to get basic information as it related to adults, particularly to older adults, and as I became more certain I must be autistic, I decided it would be useful to others to find the relief I was finding by my self discovery. I am an information seeker and information sharer by nature.

I began to write a blog about my autism journey, my struggles to find diagnosis, to find self understanding, to find information and to learn more about autism itself.

I wanted to present as much basic information as I could in one place so that others struggling to find information and maybe awkward with doing searches or reading scientific studies, etc could get explanations and be assured that they were getting reliable information without being led down the multiple paths to “woo- woo” over unscientific understanding, miracle cures, speculation without documentation, fake therapies and so much more.

About 6 years ago I began this blog.
If you have read this far, please forgive me and understand I know very little about setting up a website, even making a simple blog. I know page numbers or an index would be a great help!

To read these pages in context and in order of posting, you must go to the bottom and read backwards. ( its a pain, I know, but I don’t know how to fix it!) I am not tech savvy, don’t have much $$ to invest, I am not making a profit or trying for one, I don’t ask for donations , I am not seeking “likes” for money or self gratification.
I am simply offering a story about what I have been discovering in my old age ( I am 73 as I type this on my old fashioned desktop keyboard). I hope it serves to provide basic information in one place and to encourage those elders who are suddenly suspecting they might be autistic and want to learn more. Diagnosis has been life changing!

I hope you find what you need. If not, let me know and I’ll try to find info about it and write another blog. I am happy to email with readers. My sensory processing differences do not let me do texting, phone calls, messaging, or other “real time” conversations effectively.

What you see here can all be documented and is known and proven scientific info.
I can give references if you want more information or to know I am not “making it up”.

I could have used some explanations and information very early in my life, but until I began to suspect my ASD in my mid 60s I didn’t have the least suspicion that my neurology was the answer responsible for so many painful “whys”, for so many failures where others thrived, so many awkward moments, so many misunderstandings.

What a relief to finally learn everything was not, after all, “all my fault” but that my different neurology was working behind the scenes in almost every painful incident of the past. Best of all I learned that there are others out there who can offer insights, explanations, information and understanding because they too have lived lives with ASD. Diagnosis can be life changing even in the very last parts of life.

Autism diagnosis Its OK

Its OK if others don’t believe in your diagnosis or accept it.

So, today let’s say I finally figured out “what is wrong with me”…….. I suddenly understood that I had different neurology, either through a sudden insight, long study, or professional diagnosis. I am autistic. I have always been autistic. It explains so many struggles of my past. I can suddenly understand a lifetime of “whys” by seeing how Autism had its workings behind the scenes and nobody knew! I am excited!

It is such a relief to finally understand that I am not wrong, or bad or morally weak or deliberately evil. My neurology has impaired my understanding in social situations, given me a tendency to misunderstand and miscommunicate, I may have other struggles, such as time management or organization skills that are not what have been expected of me. It is not my fault! My neurology has been to blame for my lifetime of struggles where others seem to thrive. What a relief!

I rush right off and tell my best friend, my family, my co workers and instead of being excited and happy for me, they scoff, saying “no you’re not”, “you can’t be autistic “because (a thousand reasons such as you don’t look or act autistic etc).

Oh, that was unexpected.

My mother does not believe I am autistic, says she would have known. My sister says I am trying to get attention for myself, my co workers say I am trying to escape my responsibilities and making excuses for lack of performance. Now suddenly I am devastated. They don’t accept my diagnosis, they don’t believe me! They think I am making it up, thinking I am doing this to cause trouble. Now what? How do I make them understand and accept my diagnosis???

Answer: I can’t, and I won’t even try.
Its OK for them to think whatever they want to think about my diagnosis.
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This experience is quite common among the most recently diagnosed individuals who want to share the exciting information they have just received.

I am here to tell you its OK if they scoff, if they misunderstand, if they disbelieve. Ignorance and stigma run deep. Its OK if they want to believe differently. You don’t have to explain, ask permission, educate, justify, or apologize.
The experience of becoming diagnosed may not change the way they think about you or the way they interact with you, or the way they expect you to behave, believe, think, perform, etc. . you may get acceptance and support but don’t expect that! Many people will want to cling to the old ways of interacting, their own beliefs and feelings of guilt, shame, misunderstanding may impede a healthy exchange of information. Its OK if they struggle with adjusting to or accepting your diagnosis too.

Diagnosis will mean a world of difference to you but to them, not much will change and they will mostly be unwilling to change to help make your life easier and better. That is human nature. Change can be scary for anybody.

They may even make remarks saying things were better, easier, happier, etc. before your diagnosis.

Well, for them maybe that is true, but their opinion is their business.

It is not our job to change ourselves or our own self understanding or our ways of self support and accommodation to suit their opinions.

Its OK if they don’t accept adjustments you make to your schedules and activities to remove the things that distress you the most, make you sick with anxiety, cause overwhelm and overload, or that are simply something that you have only been doing to please another person.

It is OK to give yourself your best self care, to dress the way that is comfortable for you, to use stims for self comfort, to choose something else besides the demands and expectations others have for what they want of you at any time.

Its OK to have your own agenda, your own enjoyment, your own independent life, free of their opinions and their pressure to conform to their demands, their anger, their manipulation, abuse, shame and blame.

Knowing about our autism sets us free to see ourselves not as losers, broken and incompetent, aggravating, infuriating, impediments to other’s lives, etc. After what may have been a lifetime of failed expectations of others we can finally be free to be ourselves in our own way at our own pace and in our own style.

Its OK if they accept and support your diagnosis as they see you making progress and finding life better and healthier as you learn more about your neurology and put adjustments for self accommodation into place. This may happen in many cases. Its Ok if they never do understand.

You do not have to have any other person’s approval or acceptance or permission to find self understanding and find a healthier way to live your own life.

Its OK to be who you are in the best way you can going forward as you sort it all out and make adjustments to make every day life easier and better for yourself..

Actually Autistic

Part of the “nothing about us without us movement”

From a discussion on one of the forums I attend. Somebody was confused about the tag “actually autistic” and I thought I’d try to clarify the origins of the tag and the intent behind it.

Several years ago it became evident that autistic individuals had very little voice /participation or input over studies being done, results being published in papers and stated/accepted as facts, etc.

The world of active outspoken support for the handicapped population had generated the phrase “nothing about us without us” to protest and point out that handicapped people were not consulted or informed about decisions made in medical and governmental (and social contexts too) regarding supports, research, etc.

Autistic people began to speak up using that phrase. ( nothing about us without us) At this point autism awareness was growing and the autistic neurodivergence movement was forming. From the clinical medical viewpoint of autism being a defect that needed a cure to one of acceptance and support for those of us who differed from the majority in the way we function. “Actually autistic” became a way to show we were speaking up for ourselves and that parents, scientists, teachers, therapists, and the whole world of neurotypical individuals whose voices had dominated the information sought and provided, the support from the government, the rules and regulations and other aspects of our lives.

Instead autistic individuals began participating in these decisions and declaring our autism loudly to those who talked over us and thought they knew what was best for us without actually knowing or understanding much about autism from the autistic point of view.
Autistic people are not using “actually autistic” to differentiate between self identified autistic individuals or declare themselves superior, it is a call to be heard as individuals in discussions about our issues, our status, our treatment (both social and medical), the research that is being done , the often mistaken ideas perpetuated about those of us who are “actually autistic” .

I have not used the phrase, although I gladly participated in interviews with the administrator/ of a page with that name. Actually autistic voices must be heard and valued for the information and insights we can provide. “Actually autistic” used in communication simply identifies us as our selves and shows that we too have perspectives, insights, and experiences that must be included in anything done “on our behalf” or “for our own good” .

Keep speaking out and identifying yourself as “actually autistic” with or without using that tag.

We are being heard and little by little the full range of autism from those with the most struggles to the “highest functioning”. There is no clear dividing line between us, many gifted people struggle every day with overwhelm and dysfunction in parts of their lives too.

Speaking up for those who cannot communicate for themselves is so important when major decisions about care, support, aid, education, etc are being made today. I am “actually autistic” even though I do not have that tag on all my communications.

Not my job

Autism, appeasement, people pleasing

I grew up in fear, lived most of my life in fear, beginning with corporal punishment from my caretakers before I could even speak.
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I learned early on that I must try to please those around me in every way to avoid punishment. I learned to be obedient, submissive, “helpful”, quiet, to keep my thoughts and opinions to myself, that nobody wanted to hear about my interests, my thoughts, my wishes.
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I learned that to resist any suggestions, directions, orders, requests, or demands was to be a bad person, terrible, selfish, hateful, thoughtless, insensitive, evil, greedy, ( this would be a very long list if I completed all the negative descriptions and discussed the anger, punishment and treatment that went along with them)
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Today we know appeasement behavior comes from trauma, it is one of the instinctive responses to trauma. Fight, Flight, freeze, and appease/fawning are all responses to trauma. We use them to save ourselves from dangerous situations (traumatic events) early in our lives, or whenever the trauma begins.
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I became hypervigilant, wary and very aware of any signs in others that they might be angry, unhappy with me in any way.
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I never learned healthy interactions with others in my “growing up” home, nor in the disaster that was my first (abusive) marriage.
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I finally got therapy as an adult. The therapist was able to explain the unhealthy dynamics of my relationships, all based on me pleasing others as a response.
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I learned that I was not ever, (ever, ever, ever) responsible for another person’s happiness.
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I learned that I did not “make” another person angry, I learned that it was not my job to serve and please others, not my job to give them my possessions, my body, my labor, my paycheck, my time and effort. ( its not your responsibility either!)
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I am not responsible for anybody else’s happiness and comfort but my own.
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This was a huge concept and difficult to figure out. All my life I had been told that I made others angry, that I made them unhappy, that I hurt their feelings, that I caused them emotional pain, caused them inconvenience, that I caused them distress. It was always my job to fix that!
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I tried so hard! I learned eventually through therapy and so many patient explanations from that blessed therapist, that I am not responsible for the way others see the world, how they experience any event in their lives, that I have not got to fix things at any sign, signal, request, demand for my services, servitude, actions or interactions.
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It was a very difficult concept to understand. Autism’s inflexible thinking no doubt hindered my progress at first.
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I learned how to say NO, how to set boundaries, how to recognize when I was being used, abused, intimidated, manipulated, and how to enforce the boundaries.
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I learned how to make healthy choices for myself and not to weigh the results regarding what others thought, felt, believed, or insisted on, but only what was right for me.
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This was such a huge change from the way I had always thought and believed (and behaved).
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I still fall back on appeasement from time to time, but for the most part have learned new techniques to help myself consider what I feel, think, want, believe in making healthier choices.
(This can be done! If I could do it, I believe almost anybody can)
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The difference in my life set me free. I can’t tell you how different my life has been since I finally found out that the way we have been taught is not necessarily the way things must be forever.
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I was given new communication skills/ tools, and learned that I could choose for myself what is right for me.
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It is not our job to make others happy, to fix anything for their problems or situations in this world.
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It is not our duty to be sure that others get what they want in any way at all.
(read that again and rub it in , repeat when necessary)
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In case you have not discovered this concept, give it some thought.

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So may older autistic adults were raised using physical and emotional abusive coercion, can you see how this might apply to your own traumatic past????
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You can do something about it. You don’t have to live in fear. This fact was one of the most difficult concepts to learn and learning how to free myself has been a struggle, but the difference in my life has been that of night vs. day.
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Are you afraid of displeasing others? Are you sacrificing yourself and giving all of your time and efforts to pleasing the aims, demands, desires of others? Its something to think about!