How You Experience Autism

Posted by Ginger, Volunteer Mentor @gingerw, Wed, Jan 8 11:07am

I came across this article today, posted on The Mighty. I “get” it, as it is familiar to me. How do you react to her vision of the manifestation in her life?
https://themighty.com/2016/04/what-does-autism-feel-like/
Ginger

@gingerw – this article you mentioned, "My Answer to the Question 'What Does Autism Feel Like?" https://themighty.com/2016/04/what-does-autism-feel-like
was insightful in many ways. This statement about the variation in different people's experience of autism spectrum disorder captured my attention in particular: "Dr. Stephen Shore once said, 'If you’ve met one person with autism, you’ve met one person with autism.'”

gingerw, @mamacita @auntieoakley @xottawan @looking4advice @calypso @savanti, do you think this is accurate? If so, why or why not?

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@lisalucier

@gingerw – this article you mentioned, "My Answer to the Question 'What Does Autism Feel Like?" https://themighty.com/2016/04/what-does-autism-feel-like
was insightful in many ways. This statement about the variation in different people's experience of autism spectrum disorder captured my attention in particular: "Dr. Stephen Shore once said, 'If you’ve met one person with autism, you’ve met one person with autism.'”

gingerw, @mamacita @auntieoakley @xottawan @looking4advice @calypso @savanti, do you think this is accurate? If so, why or why not?

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@lisalucier It's not called a "spectrum" without basis for that moniker. It can be a tricky one to diagnose, because just as everyone is an individual, our internal wiring lends itself to a wide variety of responses in different situations. Plus, for many of us, we have had to mask our true self in order to survive. I wholeheartedly agree with this statement, and will be curious about the replies from others.
Ginger

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@lisalucier

@gingerw – this article you mentioned, "My Answer to the Question 'What Does Autism Feel Like?" https://themighty.com/2016/04/what-does-autism-feel-like
was insightful in many ways. This statement about the variation in different people's experience of autism spectrum disorder captured my attention in particular: "Dr. Stephen Shore once said, 'If you’ve met one person with autism, you’ve met one person with autism.'”

gingerw, @mamacita @auntieoakley @xottawan @looking4advice @calypso @savanti, do you think this is accurate? If so, why or why not?

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If I wnet back to look at postings of mine, I am certainiI would have quoted this same stsrement.

Every Autistic person is nit terrific at math.

Every Autistic person did not experience mutism. I was the opposite. Speaking in senteces at six months

Every Autistic person does not rock or swsy back and forth. But I do.

Every Autistic person does not have superior hearing. Bur I do. And it has been both trouble and a help.
Love and light
Mamacita Jane

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I believe that is so very accurate! Many of us have some similarities or we would not be having these conversations, there would be no name for it or a common diagnosis. However we are individuals and our “autism” is as diverse as we are. I also agree with Ginger that it gets further individualized by the ways that we mask, or our learned coping mechanisms, or even our experiences. I was diagnosed in my 40s because my husband saw a documentary and came to a conclusion fairly quickly, that the things he loves most in me are also the things that are wired differently. I am blessed to have him as my champion, that one thing has changed my quality of life completely. Having that one person by my side even though there wasn’t a real understanding, there was acceptance. Now that I have an understanding I can help others search for acceptance.

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@auntieoakley

I believe that is so very accurate! Many of us have some similarities or we would not be having these conversations, there would be no name for it or a common diagnosis. However we are individuals and our “autism” is as diverse as we are. I also agree with Ginger that it gets further individualized by the ways that we mask, or our learned coping mechanisms, or even our experiences. I was diagnosed in my 40s because my husband saw a documentary and came to a conclusion fairly quickly, that the things he loves most in me are also the things that are wired differently. I am blessed to have him as my champion, that one thing has changed my quality of life completely. Having that one person by my side even though there wasn’t a real understanding, there was acceptance. Now that I have an understanding I can help others search for acceptance.

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@auntieoakley , you are a treasur.e.

You are a champion for diversity and acceptance

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@gingerw , and all you out there on the Spectrum……possible trigger warning: Subject: Meltdowns and shutdowns.

My sincerest apologies for my many mispelled words above. I was sitting inside a dark room, in my wonderful Dr. Danny Lee's office. With an eye patch on. Just having had cataract surgery at 7:45 am. I could see throuugh the patch in daylight. But in the dark, not so much.

This conversation is near and dear to my heart. When I meet another Autie it is like a family reunion. There is a distinct bond that we share. Its almost like we speak a shared, ancient dialect. We have no.problem looking each other in the eye. We can do this because we are safe. We are home..

This is how I feel. I have masked so long, all my life, really. In order to fit in as much as possible.

Now I am learning who the real Jane is. And you lnow what? I like her.

This is freedom. This is real life on my own terms. I like having a differently wired brain.

I like the fact that I can sit down with an encyclopedia and be just as happy as a clam.

I also like the fact that I love being sociable. Until I'm not. Then, I make my excuses and head for the door.

I dont like the fact that people have called me "high functioning Autistic." People who meant well.

What you see when you look at me is the result of many prayers, random acts of kindness, determination to find the answers, topped off with the grace of God.

I have been fortunate that there were people who cared about me all throughout my life, even when they knew I was socially awkward, extremely shy, and very sensitive. There was no name for whatever was going on with me. But they loved me anyway.

I only appear to be high functioning because you can't see the scars. You dont see the shame and the tears, and the times when I would curl up in a ball for hours in a dark room.

I prefer to reference Auties' life situations as low amount of support, moderate amount of support, and high support level. The more you pour into an Autisic persons life, the less meltdowns and shutdowns there are. The more space and time and attention you give an Autistic person, the more they will grow.

Oh how exciting this is, to be able to research, learn, and share our stories here!!

Remember to check out Neurotribes, Everyday Aspergers, and Attwoods' Complete Guide to Asperger's Syndrome.

See you next time!

Jane
.

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@mamacita

If I wnet back to look at postings of mine, I am certainiI would have quoted this same stsrement.

Every Autistic person is nit terrific at math.

Every Autistic person did not experience mutism. I was the opposite. Speaking in senteces at six months

Every Autistic person does not rock or swsy back and forth. But I do.

Every Autistic person does not have superior hearing. Bur I do. And it has been both trouble and a help.
Love and light
Mamacita Jane

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@mamacita I was reading junior high books at 4 yrs old, and very "precocious" but extremely socially awkward. My grasp of concepts was beyond my teachers' comfort levels. When asked at age 13 how I came up with the correct answer to a mathematical problem, I couldn't give a step-by-step except it was different than what was being taught, so it was labeled incorrect. My senses of smelling and sound are highly tuned, as is my ability to hear inflection in spoken words/body language. While it might look like I am sitting still and taking part in conversation, a closer look might reveal me turning a ring, fingering a bracelet or pocket stone, drawing designs.

@auntieoakley How blessed you are! We should all be so lucky to have such an advocate in our corner!
Ginger

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@gingerw

@mamacita I was reading junior high books at 4 yrs old, and very "precocious" but extremely socially awkward. My grasp of concepts was beyond my teachers' comfort levels. When asked at age 13 how I came up with the correct answer to a mathematical problem, I couldn't give a step-by-step except it was different than what was being taught, so it was labeled incorrect. My senses of smelling and sound are highly tuned, as is my ability to hear inflection in spoken words/body language. While it might look like I am sitting still and taking part in conversation, a closer look might reveal me turning a ring, fingering a bracelet or pocket stone, drawing designs.

@auntieoakley How blessed you are! We should all be so lucky to have such an advocate in our corner!
Ginger

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@gingerw
@auntieoakley
@lisalucier
@colleenyoung, Connect Director

When you meet me I will look you in the eye. Because you have proven yourself safe. Trustworthy. Respectful of diversity.

When you meet me ( and you will….I have no doubt about that) you will wonder about the number of bracelets and necklaces I wear. You might think I am part of the Traveller Community. ( Formerly known as "Gypsy.") There are at least three bracelets on each wrist. Two cross necklaces and one more necklace around my neck. Wedding rings. Anniversary ring. They "weigh" me down. I "fiddle" with them when I am a bit anxious. Stimming preferences happen naturally. When I write a long letter, or story, I will play with the pen. Twirling and twisting.

When going to meetings, seminars, church, or counseling sessions ( my part time job) I always have a water bottle, notebook, pen, spare pen, spare pen for the spare pen, scissors and tape. Gum, or breath mints, small inspirational books that fit into my purse, and hand sanitizer. These are not stims. But they are "transition" items that help ne stay focused and available to do my job. Just like we let litle Auties in the schools have transition objects to hold onto . When they are changing classes or standing in line to go to lunch or recess, or whatever. The transition object gives them something treasured to hold on to. It helps give them resilience. They eventually learn to look within themselves for resilience. So do we adults.

Someone asked me a question this week about enpathy in Autistics. They thought we did not have empathy . I told them that was a commonly accepted myth. That actually, we are more sensitive to hurt and deep feelings. We feel too much sometimes. So much so that we shut down to protect ourselves. She seemed quite receptive to that notion..

So when you meet me, and you will, this Grandma, this Mamacita, this Abuela, will be so happy to greet you in real life for the very first time. With a hug, if you are a hugger (I am) and no doubt with grateful tears in my eyes. In gratitude for having found this place. And for you all being so transparent.

Love and light,
Mamacita Jane

REPLY
@gingerw

@mamacita I was reading junior high books at 4 yrs old, and very "precocious" but extremely socially awkward. My grasp of concepts was beyond my teachers' comfort levels. When asked at age 13 how I came up with the correct answer to a mathematical problem, I couldn't give a step-by-step except it was different than what was being taught, so it was labeled incorrect. My senses of smelling and sound are highly tuned, as is my ability to hear inflection in spoken words/body language. While it might look like I am sitting still and taking part in conversation, a closer look might reveal me turning a ring, fingering a bracelet or pocket stone, drawing designs.

@auntieoakley How blessed you are! We should all be so lucky to have such an advocate in our corner!
Ginger

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@gingerw ,
You make me think of myself and my oldest Grandson.

I already knew how to read when I arrived at first grade in my Sweet Home Alabama school.

My teacher used me to help teach others to read. I enjoyed that so much. I still to this day love to help children learn to read.

My oldest Grandson was in kindergarten when he brought home a little paper book that we were to help him read.

He sat on the sofa, exactly in the same spot where I am sitting writing this. I could hardly breathe when I, in the kitchen with my back turned to him, heard him read that book word for word. I should not have been so surprised. When he was only nine months old, his first sentence was " Thank you, Jesus!" Repeated twice more.

I taught music class for two years when I was eight and nine years old.

I can do and know lots of different, sometimes strange things.

Like you, @gingerw, I found that some teachers did not like it when I could come up with an answer differently than the way she taught. It. I understood it better my way. I was not trying to be difficult.

Love and light,
Mamacita Jane

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@mamacita

@gingerw
@auntieoakley
@lisalucier
@colleenyoung, Connect Director

When you meet me I will look you in the eye. Because you have proven yourself safe. Trustworthy. Respectful of diversity.

When you meet me ( and you will….I have no doubt about that) you will wonder about the number of bracelets and necklaces I wear. You might think I am part of the Traveller Community. ( Formerly known as "Gypsy.") There are at least three bracelets on each wrist. Two cross necklaces and one more necklace around my neck. Wedding rings. Anniversary ring. They "weigh" me down. I "fiddle" with them when I am a bit anxious. Stimming preferences happen naturally. When I write a long letter, or story, I will play with the pen. Twirling and twisting.

When going to meetings, seminars, church, or counseling sessions ( my part time job) I always have a water bottle, notebook, pen, spare pen, spare pen for the spare pen, scissors and tape. Gum, or breath mints, small inspirational books that fit into my purse, and hand sanitizer. These are not stims. But they are "transition" items that help ne stay focused and available to do my job. Just like we let litle Auties in the schools have transition objects to hold onto . When they are changing classes or standing in line to go to lunch or recess, or whatever. The transition object gives them something treasured to hold on to. It helps give them resilience. They eventually learn to look within themselves for resilience. So do we adults.

Someone asked me a question this week about enpathy in Autistics. They thought we did not have empathy . I told them that was a commonly accepted myth. That actually, we are more sensitive to hurt and deep feelings. We feel too much sometimes. So much so that we shut down to protect ourselves. She seemed quite receptive to that notion..

So when you meet me, and you will, this Grandma, this Mamacita, this Abuela, will be so happy to greet you in real life for the very first time. With a hug, if you are a hugger (I am) and no doubt with grateful tears in my eyes. In gratitude for having found this place. And for you all being so transparent.

Love and light,
Mamacita Jane

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Deeply humbled.

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@auntieoakley, I'm at a loss at how to respond. Today was a long day. I drove my daughter to turn in some paperwork.

She is very ill with so many different, chronic conditions. She will have to go to a nursing home. It takes more than three people to take care of her.

So, I'm not 100% right at the moment. A little tired. Wishing things did not have to be this way.

Thamk you for your input and your support. We are so glad you are here.

Love and light,
Mamacita Jane

REPLY
@mamacita

@auntieoakley, I'm at a loss at how to respond. Today was a long day. I drove my daughter to turn in some paperwork.

She is very ill with so many different, chronic conditions. She will have to go to a nursing home. It takes more than three people to take care of her.

So, I'm not 100% right at the moment. A little tired. Wishing things did not have to be this way.

Thamk you for your input and your support. We are so glad you are here.

Love and light,
Mamacita Jane

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Thinking of you during a tough time.

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@mamacita

@auntieoakley, I'm at a loss at how to respond. Today was a long day. I drove my daughter to turn in some paperwork.

She is very ill with so many different, chronic conditions. She will have to go to a nursing home. It takes more than three people to take care of her.

So, I'm not 100% right at the moment. A little tired. Wishing things did not have to be this way.

Thamk you for your input and your support. We are so glad you are here.

Love and light,
Mamacita Jane

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@mamacita It's a tough decision, and shows your strength indeed. And shows how much you care for the well-being of your daughter, her son, your family, and yourself. There may be those who cannot understand this move. We are here for you, cup of tea or coffee ready to hand you, a cozy blanket to wrap up in.
Ginger

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@mamacita – also thinking of you and your daughter. Have you come to any further decisions on your daughter and her future care?

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@lisalucier

@mamacita – also thinking of you and your daughter. Have you come to any further decisions on your daughter and her future care?

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Happy Sunday, everyone! From Gatlinburg , Tennessee.
Our Wild Women Sisterhood trip to the American Smokies began Friday morning. I am the only Autistic here in our cabin. One Momfriend is a writer. And a mental health advocate.

My daughter is here. The one from Georgia. We have had a ball. We are right on the edge of a little mountain and there are bears here.

My daughter who is,disabled is safely ensconsed in her very own handicap accesible apartment, surrounded by lots of windows streaming sunlight.

She forgot I was in Tennessee and has texted me for things she needs help with. She was provided with a fridge full of food Thursday evening. Flavored water, coffee.

I have had a few moments of not understanding the unspoken rules. It didnt hurt as bad as it did in the early years.

I believe I am quite possibly becoming more resilient. The hurts of the past are not as painful.
I have moved on in so many ways.

So good to see @sirgalahad here!

Welcome everyone. We are glad you are here. And to the Autism Mom at the gas station on the way up here…welcome, friend. We are here for you. You were my checker for a reason. You are not alone. You have power. Your child has mandated rights.

And we are better together.
Love and light,
Mamacita Jane

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