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.




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?

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?

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 sensory processing

VISUAL INPUT what do you see?

I knew years ago that visual input was upsetting to me. Long before I knew about my autism, I knew I could not handle moving images or images of violence, suffering, or anything emotionally significant.
Seeing those sorts of images, whether moving or still give me emotional reactions that stay with me to re-live the feelings they evoke repeatedly and randomly, never knowing when thoughts and memories of those images will haunt me and torment me.

There is nothing I can do in most cases to alleviate the horror of these visual images once I have seen them. I learned as a pre-teen to avoid the nightly news broadcasts. The war in VietNam was the focus of almost every broadcast, the bloodier the better.
Repeated images of the Kennedy assassination when that happened, standards for what visual images were allowed on TV , newspapers, magazines, etc changed rapidly in the 1960’s and anything gruesome or horrifying was usually the opening story. “if it bleeds it leads”.
Not only do I struggle to understand moving visuals and always have a processing “lag”, whether it is something on the screen or a photo or actually unfolding ‘in real life”, but I find I am filled with a rush of emotions in the graphic visual input which seems as if it has no place to go. I experience horror, fear, angst, all the intended emotions meant to be drawn out by these images and the experience is immediately and continually emotionally overwhelming. I am battered emotionally and continually when I allow myself to be subjected to such images, whether real life images or scripted fiction being enacted. I choose to avoid this experience whenever possible.

I can not sort and file the experiences and tell myself “it is over” “It is just a movie” or use other filters which most people use when they have visual input. Those filters for me have never existed.


Add a sensitivity to sounds of suffering ( screaming, crying, pleading, anguish and pain) I find many tv or movie/video experiences too painful to subject myself to willingly.

Even in day to day life, I have always struggled with visual demonstrations of “how to do” from teachers, medical explanation videos, employers visually demonstrating how they wanted the work done, etc etc etc.
Give me a booklet with line drawings and printed explanations to illustrate these things and I will understand.
It all happens too quickly for me to sort the steps and expectations, listen to instructions and see what is being done… “are there any questions now?”
I always annoy the presenters of these things. Yes, there are plenty of questions.

It is as though I don’t have a working filter or a thermostat for the emotions aroused by seeing such things and hearing them.

My first memory of this effect is when I was taken to see Disney’s original Fantasia and my screams of fear at the skeletons in the bald mountain scene and the trouble Mickey Mouse was getting himself into (NO Mickey, NO NO!!!) and simply being “shushed” because it might annoy others around me. I was about 4 years old. I have been able to protect myself from such distress since I became old enough to choose not to participate in activities that are likely to lead to such distress.

It is said that visual processing is a strength for most autistic folk and that being able to visualize is our greatest ‘gift”. Not for me, and maybe not for many of us. I can not visualize a thing!
Don’t let generalizations lead you to forget autism is experienced on a spectrum, and not one of us is the same.
Is my reading considered a form of visual processing? Perhaps, but it is at my pace and although I rely on seeing the words to read them, my “inner brain” speaks the words and I have always thought my reading experience was more sound oriented (the sound of the words in my head to myself) than visual.

Perhaps my inability to visualize in my head has much to do with the processing of visual things. I do not recognize people out of context, this includes in movies when there is a change of scene and wardrobe. (who is that guy? Oh, that’s the hero of the story?) I am repeatedly made fun of because I recognize none of the movie stars, tv heroes or other popular characters. ( OK, I just realized I do still recognize Mickey).
I do recognize voices after listening to them just a few times. I surprise my tv watching husband when I announce that the voice belongs to X actor or actress… I am usually right. Can’t recognize a face to save my soul, but give me a voice.

Sometimes I imagine myself in a nursing home at some point (one out of 3 people eventually spends at least a month in a care home before end of life) and can only be horrified thinking about the managed use of the common room several times a day , and me being forced to listen to dozens of people, a blaring music intercom and a TV turned up to accommodate those who are hard of hearing. If I am unfortunate enough to be unable to move myself, I could be plunked down somewhere facing a TV with horrible images, screaming and crying, in a room full of din and things I would never choose to see, people I would ordinarily hide from, and subjected repeatedly to this…. There are no ways to describe the resulting misery. Perhaps you can imagine for yourself.


Edited a few days later to add more content.
Visual processing issues can also cause much distress in everyday living. One often reported distressor is light that is too bright, light that flickers, light that is the wrong color or too direct, too focused, too diffused. Think of all the ways we see light in our day. I get motion sick due to the rapid changes in light/flicker effect/ inability to process moving images. I can get sick in a car, or I will get sick watching any rapidly moving images on TV, Movies, Videos, and video games. I always do better in a vehicle when I am driving, perhaps because I can correct the motion of the vehicle and affect it in a direct way, or because I am more in tune with the motions of braking, turning, stopping, slowing down or speeding up and can prepare myself for such things and correct for them. Wearing very dark wrap around sunglasses seems to help keep shadow flickers from affecting particularly my peripheral vision, and I am sick a lot less now that I finally learned that trick.

Visual struggles and issues with bright light, colors, patterns, and shadows can cause much distress for those unwillingly subjected to certain conditions.
In many cases, those of us who are prone to seizures (about 30 to 60 percent of autistic people, depending on who is reporting the issue) will react to flicker and rapidly changing visual input by seizing.
Reports of meltdowns caused by the flicker of a fan throwing shadows repeatedly across a room, motion observed through a window and resulting reflected light changes, etc. are frequent. The affected person might not even recognize what is distressing them.
If you experience distress when you are in certain situations you might be able to seek out causes when you recognize problems with light and visual processing. Many autistic people wear sunglasses or colored lenses which seem to help change how we process visual input.

Reaction to Diagnosis

I don’t know if it is the same at any age

I have not looked at any studies, but I participate in several autism based groups online. Ideas stated here have for the most part been formed on my own experience with encountering autism, and reported experiences from adults in online groups I belong to.
Each person’s experiences and perceptions will of course be different.

I think it might be a bit more difficult to shift gears as we age. Autism is known to cause rigid thinking. We older autistic folk have had plenty of practice at forming rigid ideas by the time we reach our 60’s.
Is late diagnosis of autism more shocking to those of us who are elderly? I suspect that it is.

As older adults, we have overcome or adapted to many struggles alone.
We have spent a lifetime believing we are “normal” but also believing we are somehow different, incompetent, selfish, bad, wrong, stupid, useless, thoughtless, inept, uncaring, rude, intrusive, hateful, and on and on… a litany of fixed ideas in our older and less flexible brains, learned in our earlier life and more or less accepted as inner truths because we did not know about autism. We have set ideas about ourselves and others and how the world as we see it works.

We may have wondered why we struggled, but learning at last,( although it is sometimes a relief), that autism is the answer, we may suddenly find ourselves scrambling to find a new platform to view our innermost selves.

It is as if the ground we have stood upon for so many years is crumbling.

The foundations of the house we built our ideas on is being torn down.

We will need time to replace these with ideas about our selves and how our diagnosis of autism makes everything different.

Many older people report feeling shocked at first, even though they knew, deep inside that somehow they were ‘different’.
Knowing about autism changes all of the concepts and precepts we may have held about ourselves and our world.
Knowing that we have been wrong in the way we understood almost everything in our worlds, well, that is a lot to digest!


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Let me insert a warning here. Your autism is hugely important to you, but it will be of little consequence to most all of the people around you. They will be likely to react by passing off the information of your self discovery lightly, and assuring you that they still love you etc. .
They will be likely to make ignorant statements about “everybody being a bit autistic” or they will deny it… never mind, don’t argue. Don’t take these things personally. Your diagnosis will mean the world to you, but as in all things, most people will not be able to understand and since it doesn’t affect them personally, most will simply not be very interested. That’s OK. It does not mean they do not care about you, they simply don’t see the significance of your discovery. But they will see the results as you work though your new understanding of your self!


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Learning about our autism is a shock in the way that a sudden loss is… but this is loss of self identity.

Most people newly diagnosed with autism report going through the stages of grief. Shock, denial, bargaining,sadness, anger, acceptance. All appear and disappear, in any order, in rapid transition or slowly over days and sometimes years.
Do not be surprised at your emotional responses to finally learning you are “on the spectrum”.

My major reaction on figuring out I have autism/am autistic was relief. I knew there was something different about me, but had not a clue as to the nature of my struggles or why I seemed to have so many difficulties with things that others seemed to find easy.
I have been grieving in an ongoing way for years, but now I have an answer for that too. I have been sad for the loss of opportunities and things that ‘might have been’. I have regretted so many incidents of the past where I made bad decisions, misunderstood motives, misjudged so many people or situations. I have been angry over many of those things too. Nobody knew!
Feeling cheated of an ordinary life (whatever that is!) and wishing I had known or simply not been given autism as my share in life, feeling extraordinary relief and curiosity on learning how I was different and why… all going round and round inside me.
I bet you will feel similar things and a whole range of emotional turmoil. It is like being engulfed and having to learn to swim. Not a piddly little word, but one with great meaning and consequences “autism”.


Newly diagnosed with autism means loads of emotional homework, lots of looking for new ways to interact with one’s world, and new understanding of so many painful things from the past.
Please give yourself time to process all the new information, the new ways of looking at life and others, the new things you learn about yourself.
It took a lifetime to learn all the ideas that now are being shaken and tested from new perspectives.

Many new ideas will take the place of some old “stinkin’ thinkin’ “. , Many old ideas will be discarded, pains will be dug up and revisited from new perspectives.
I like to say I am a work in progress. My growth in understanding of my world, my self, and everything that applies to these things has been phenomenal. It has been the most exciting thing, freeing, uplifting, a sort of fresh start in a new and better world, to learn of my autism and to learn how to live better through my better understanding of how autism has touched every part of my world for the previous 65 years before I knew, before I began to understand so many answers I found when I found out about autism.


It is my deep hope that the medical community and those learning about autism to apply to professional practices today will be able to help not only children and families dealing with autism, but will be able to diagnose and explain their autism to old people just like me, but who remain still undiscovered and struggling with their Autism without knowing.