How is it Different?

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

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

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

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

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

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

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

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

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


Is today’s child any better off?

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

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

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

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

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

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.