Autistic Communication

It is a two way street!

In other words, it takes two to communicate. Much time is spent teaching autistic children “how to communicate” with allistic/neurotypical others, but not much seems to be said for what allistic/neurotypical individuals can do to understand our communication styles.

Recent studies show that autistic individuals communicate very well between each other for the most part, because our communication styles are more similar to each others’ than the style of allistic/neurotypical individuals.

As an autistic person I am very direct. I am uncomfortable with social “chit chat” and don’t get subtle nuances. I don’t get “hints” or things like sudden complete silence, body language, or sudden change of topics as hints that what I am saying is making the other uncomfortable somehow.

I don’t get subtle signs intended to suggest things that are not directly stated and can not “read between the lines”.

I simply can’t take in any meaning of things that are hidden “between the lines” and meant for me to understand without your having to say it clearly , explicitly, and with as much detail as possible.

I am honest. I tell it like it is. An allistic or neurotypical individual may tell a “social lie” or fabricate excuses or carefully-carefully tiptoe around an issue to be sensitive to the other individuals emotions/ feelings. If you do that with me, I am likely to entirely miss your message!

I am usually unaware that what I say may or may not cause “hurt feelings”. I say directly what I think. Even though I have been warned to “think before you speak” and “put yourself in the other person’s place” I find this very difficult to do. I would not intentionally trample feelings, try to make another feel bad, or deliberately insult another, but often this has been the result of conversation “in person” or in written correspondence.

Hints for allistic/neurotypical folks when communicating with those who are autistic.:
Get to the point without a lot of light chit chat. Be direct, be honest and expect directness and honesty from your conversation partner. Be as specific and literal as possible, provide plenty of details for complete understanding.

We may not “fill in the blanks” easily or understand your intent unless you fully explain it. Don’t assume we are grasping subtle nuances or hints.
Don’t assume we meant to be insulting or hurtful in any comments we make in conversations. It is very difficult to understand things from another person’s perspectives and we may need explanations in detail to complete the thought in any suggestion or allusion an allistic/neurotypical person makes.

Autism bridges

building a bridge for better communication

One of autism’s primary struggles is with communication. Because of various struggles, visual, audio, and other processing weaknesses, we often need help to make connections in things we are being told, taught, participating in, observing or planning. Communication struggles generally don’t allow us to “get the idea” and then fill in the details. We need the details in order to understand the idea, or the “big picture”. This may not be true for all autistic folks but it surely is true for many of us! Neurotypical individuals have conversations using leaps of understanding, intended inferences, references and nuanced speech which often leave people like me with low percentile hearing and visual process functioning far behind. I simply “don’t get” hints, allusions, or vague references to metaphors, comparisons for contrast in sarcastic quips, etc.

I was talking with our daughter in a stressful situation a couple of weeks ago and I had to ask for her to clarify something she said. I often interrupt if I don’t understand, and some people find this extremely annoying, but daughter and I usually communicate very well and she is patient with me.

When I asked her about the context of her last comment, she said “OH, I forgot to build a bridge for you”. The meaning was clear, she had been intentionally making connections for me to follow in our conversation. The idea delighted me and moved me deeply. And I loved the easy description of the verbal practice she was using.

The comment endeared her even more to me. (and she is beloved!)

Knowing and understanding my communication weaknesses , she deliberately builds connections verbally so that my mind can follow her intent in communication.

How wonderful if others would do this too. I never recognized how she had been doing this intentionally, and I was struck forcefully with deep gratitude for the extra effort she has been taking since she learned of my autism to make communication easier for us together.

If you have an autistic loved one, perhaps give consideration to building communication bridges to help fill those gaps where we simply can not travel without the help of extra explanation of connections in thoughts, ideas, and intentions.

Autism for professionals

Addressing autism in clinical and service situations.

Having lived a long life I have had many encounters with medical, clinical, hospital, therapy, and other situations where I have been given treatment of one sort or another. There have been some really good experiences, but also some very bad ones.

Many diagnosed autistic adults now carry Autism ID or explanations in their wallets to help interactions with first responders. Many have identifying medic alert cards, bracelets, tags, etc.
There is even a trend to carry “medical passports” explaining autism and special needs surrounding the individual. I like that idea. I carry autism ID and will be working on creating an explanatory passport which I will ask to be included in my files ( or for my family to do that if I am not able at any point) I can do that now because I understand I am autistic.

But many of us are still unidentified as autistic through lack of diagnosis, etc. We are likely the “difficult” ones. I am sure I have been difficult in some of these situations, but it was never my intent.

I have realized that my most positive experiences in these situations had some common elements.

The treating personnel identified themselves to me and addressed me when first approaching me. They told me what they were there for, what they would be doing, and answered questions about how, why, etc before they proceeded with exams, treatment, etc. I was able to cooperate with full understanding from then on.

Statement of intent and then full explanation with discussion if necessary may not always be practical if it is an emergency situation where life saving techniques are urgently needed, but even there, as treatment is being given, it can be explained, with the professional first stating their identity and explaining as they work.
In every bad experience I have ever had, people approached me and put hands on me directly without telling me who they were, what they were doing or about to do, and without explaining why, what would happen next, etc.
Example: I went through a series of doctors for treatment of a broken arm and subsequent therapy, and not one of them explained a thing, neither support staff or the doctors themselves.
Not one gave me the opportunity to ask questions at any point, certainly not before beginning to examine me or treat me.
The diagnosing doctor and the treating orthopedic specialist evidently hated each other and had an ongoing feud. I had no idea, and every thing I told the orthopedic doctor about what the diagnosing doctor had said was misinterpreted possibly deliberately, ( although my autistic understanding and word for word quotes did not actually convey what I understood later as the diagnosing doctor’s intent) with fury.
I was not treated the same as the orthopedic doctor treated most of his patients, and I did not understand this until I spent a lot of time thinking about this 6 months treatment and its progress long after it was over, and I began to pick apart the experience from my new understanding of my autism.

There was not explanation of anything when my cast was removed, what to expect, how I could help it, nothing. I drove home in pain trying to use that recently freed arm fully in spasm and violent cramps with a stick shift car through unknown city streets with two small (autistic although I did not know it then) children in the car. Maximum stress on several levels which could have been avoided if I had known what would happen and asked somebody else to drive us home.

I was not prepared for subsequent physical therapy, nothing was explained, my arm was in intense pain and I was defensive. I was taken down a long shadowy corridor full of sounds into a closed off room where I was made to wait. Then finally somebody came in and grasped my shoulder and elbow and began to twist it. She did not introduce herself or explain what she would do. Perhaps I should have understood but I had a full blown panic attack , asking what are you doing. She said I am going to assess you, without further explanation and tried to grab me again. She was angry, I was being difficult. I asked again, what are you doing, she said the same thing, only louder, and I pulled away.
She went to get her boss and he addressed me with impatience and aggravation. I refused to see the same therapist and he brought somebody in who very quietly explained what was going to happen, why, and how, and who asked permission before they touched me. It was a series of events that had not needed to happen. I had been confused and frustrated from the beginning, trying to understand what was going to happen, how and why at every turn, with not a single explanation offered. I was angry, fearful, defensive, and frustrated. It did not have to be that way.

Here is a simple formula which would do no harm for any professional addressing any patient or client.
Introduce yourself.
Explain what you intend to do, explain how you will do it and why you will do it.
Invite questions for further explanation if needed.
With autistic folks you might have to draw a sketch or give somebody a brochure or pamphlet that explains complicated procedures. Not all of us understand well from videos, but some of us will appreciate demonstrations visually as the best way to explain.
Then when it is understood what will happen and why, proceed by asking permission to touch the subject to allow a bit of time to prepare for that interaction.
I can’t imagine how this would be undesirable under any circumstance except in cases of true emergency where seconds count.
Introduce yourself, state intent, then explain before proceeding.

Repeating the same words only louder when asked a question or for explanation only pushes panic and fear, and builds resistance due to anxiety in an already confusing, frustrating, fear inducing situation, often while we are in pain.

I think about the stress and distress in several medical situations where this would have saved everybody a lot of headaches and problems.

Introduce yourself, state intent, explain and then proceed.

I carry emotional trauma with me from some of these experiences. Deliberate cruelty and angry, vindictive and resentful behavior on the part of staff, (punishment meted out when the subject is confused, bewildered, and in pain) is unacceptable, but I have been treated that way on several occasions without my understanding why.

I have managed to sort a few of these experiences, but others are still unexplained in my position as subject/victim and my autistic understanding. ( or lack thereof).

Everybody is human, medical folks and support staff are pushed hard and spend long hours in service to others, and can have bad days just like anybody else.

I do understand that, but I hope that others can avoid distress and painful experiences through some simple steps that might make things easier for those of us whose understanding may not be complete.
What is obvious to some who are familiar with procedures may be bewildering and frightening to others. Thanks for your patience and compassion in looking beyond appearances to understand.

Shoulds

ought, supposed to, and other unhelpful or damaging words and phrases

This is about undefined expectations and non specific social pressure, guilt, shaming, and other undefined vague or incomprehensible negative communication.

Should sit up by age 6 months
Should walk by age 18 months
Should talk by age 24 months

Expectations for performance in our lives are set at a very early age. Before we go to day care we should be potty trained, before we go to school we should be able to dress ourselves, tie our own shoes, wash our hands and brush our teeth.

In school we should be able to sit still, listen to and obey the teacher, should be performing according to the parameters set in the guidelines for our average grade levels.

And so it goes. By the time we reach adulthood we have heard that word “should” at least a thousand different ways in a thousand different contexts allied with performance and expectations.

Somewhere in that, ” should “also is used to shame.
You should know that.
You should have….( done something)!
You should not ( have done something else)!.

“Should” becomes condemnation and guilt causing.
Added are variations of should: “ought to”, and “supposed to”.
You ought to know what you did wrong!
You ought to be able to figure it out!
You are supposed to (be like this, react like this, think like this).

I spent years in emotional chaos and despair over these words and this particular form of communication from others.
How was I supposed to know the things they said I “should”?
They never explained or defined their complaints or their criticisms so that I could avoid doing whatever it was they did not like me to do from then on.
I got responses such as “that was so mean” or “you hurt my feelings on purpose” or “You know very well what you did!”.
I could not understand how I was bad, wrong, thoughtless, improper, incorrect, etc without specific explanations of how I had offended or made mistakes that were so frequently interpreted as deliberate actions meant to cause emotional pain, to show defiance, or to deliberately thwart or frustrate others.

I was told constantly “you should know by now”, ” I should not have to tell you to” , “You ought to be able to figure it out”, and “you should not need help with that” .

I did not know, you did have to tell me, I was not able to figure it out on my own.
I was lost, confused, frightened and felt terrible because it was obviously “all my fault” but I did not understand how that could be so. I had absolutely no idea of how this had happened. I had absolutely no idea of what I could do to make sure it never happened again, but oh how I wanted to fix that!!!!

Add to this “you’re not supposed to be like that” ” You’re supposed to say (this)” or “You are supposed to ( do this)”.
I was often told I was supposed to want certain things, supposed to feel certain ways, supposed to like certain things, or to react in certain ways. I tried so hard to comply.

The world was just full of rules I tried so desperately to understand.
I did not know until years and years later that the words “should, ought, and supposed to” were subjective and dependent on the expectations of the person speaking rather than rules written in some unknown and hidden social code book to which I was for some reason not allowed access.

I did not know that the same “should”, “ought” , “supposed to” did not apply to everybody equally in any interaction. Nobody told me. I did not have a clue!

I wish somebody would have explained.

If you are the parent of a child with autism, it might be helpful to omit those few words and provide complete and detailed explanations of expectations and how they are to be met.
Adults with any kind of interactions or relationships to adult autistic persons, for these folks, I suggest the same.

Disappointing behavior, words spoken, actions taken, and expectations not met can be helped most by explicit and detailed explanations about why a certain action is preferred.
Please provide detailed description and explanation about how the expectations can be met in the future.

Your autistic partner in communications, child or adult will be much more likely to understand your expectations than by your telling them “you should know”.

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.

Details

Its ALL about the details!

Recent studies have shown the main differences in patterns of thinking between those who are “neurotypical” and those who are autistic is a matter of which comes first, the “big picture” or the details.
Neurotypical people ( NT) tend to notice and take hold of the general idea of any concept and then fill in details “as they go”. Generalization first, specifics to follow.

Autistic thinking patterns generally are to gather details as if they were clues and assemble them to create a complete understanding of the concept or idea.

Before we proceed we want to know as much as we can about it.

How does this work in every day living and communication?

I struggled with general concepts as a child. Vague non specific directions gave me fits!

Clean your room! (autistic thinking asks, ” how clean must I get it, clear it of clutter only? Sort the clutter or just get it out of sight in a closet or a drawer? Strip the sheets and take down the curtains, wash the walls? Wash the windows? Vacuum, dust, polish??? “)

Do the laundry! ( autistic thinking asks, ” just my laundry or the whole family’s? Just start a load or spend the day doing all of the stuff in the piles, drying, folding putting it away? Sort by color? Sort by fabric? Sort by family member? Can I put this set of dad’s work overalls in with mom’s best tablecloth?” )

Go get dressed! ( autistic thinking asks, ” play clothes, work clothes, dress up clothes?, are we going somewhere? What shoes to wear? Why can’t I find my favorite socks? I can put on my play jeans under my dress so I can be ready for anything! ” )

Walk the dog! ( autistic thinking asks “where should I take him, back yard, around the block, to the park? Should I use the long leash or the short one? How long should I walk him? Do I need my hat, coat and gloves? Should I bring baggies and his bottle of water and his dish?”)

There is a lack of understanding in the NT mind, that we NEED those details. It is not enough to state intent, it needs to come with specific information. Especially as a child with little experience in the world, statement of intent does not tell us what the expectations for each act we are told to perform are, nor does it explain how to do these things!

State intent, then be as specific as possible about expectations and give as much information as possible to any directions. This method still works best for me today at 68 years old.
As a young child, had to be taught in small and very specific steps to know how to clean each area of the house, how to do the laundry,how to iron each piece of clothing or linen, how to wash the dishes, what was expected of me when told to clean my room, how to empty waste baskets, take out the trash, How to use the vacuum, each specific chore had to be explained in detail.

Things that were evident to my NT siblings through observation were not obvious to me. Knowing today that I have very little neurological ability to process moving visual input, this makes more sense.

This pattern has continued all my life. If my husband says he wants to go to shopping, I need to know where we will go, what time we will leave, what are we buying?
If I must travel, I make lists of things to bring and I look up my destination on the map, view it on satellite programs, write down directions on how to get there, plan time of departure and arrival, think about where I will stop for rests, gas, and any other stops I might want to make.

Going to a meeting or program in town involves the same planning, how do I dress, what do I bring, how long will I be there, How do I find the place (mapping and perhaps even a day before recon if I am afraid i won’t find the place in time for the planned activity) Who will be there? How many are expected? Will there be food? What is the schedule for the program? Where will I park? These things may be intuitive to some, but they are conscious questions that need answers for me to be comfortable to proceed.

If I plan a new project or want to learn a new skill, i will seek information ahead of time on the internet or in books, and read about “how to do it”. I can not watch videos or listen to podcasts to get the information. Once I learn all I can about the skills needed and the correct ways to proceed, I am able to carry out most of these projects with little outside help. But if somebody just told me to simply ‘do it’, I would most likely not be able to proceed. I have to get all the details, line them up, and then I feel confident I understand.

I am often chided by others for not being able to “go with the flow”. I am aware that I irritate others by asking all of the questions I need to know to assemble a complete idea of what will happen in my head. I need all of those details in order to understand.

My husband amazes me. He could watch anybody do something, then do it himself.

I know he is NT because very little has to be explained to him. He sees what has to happen and is able to complete the project using things he has learned by watching and listening.

One of the best things you can do to improve communication and understanding with an autistic person is to state intent, then explain in detail, using as much detail as possible. Do this in every day activities, no matter how small they seem to you. It might be annoying to you to have to do this, know I am not trying to be a pain, but that I need to ask questions in order to understand. It might take extra effort on your part, but you will usually gain willing cooperation if I understand the “big picture” in any scenario.

This is especially true if I am in a medical setting, or in any new place where I am expected to comply or cooperate with issues that are new or require some form of participation on my behalf. Please state intent and explain what will happen in as much detail as possible.

Answering the questions of ” What, when, why, who, where, how?” makes my world and my place in it easier to understand, to negotiate successfully, and to perform satisfactorily.