Experiences With Autism

Posted by Ginger, Volunteer Mentor @gingerw, Aug 14 7:01pm

While being on the autism spectrum, as wide as that is, we often encounter falsehoods and misconceptions that the neurotypical person may have about our situation. Often, we hear comments that may have us shaking our heads, thinking, "Really?" or, "Why is that okay to say?"

Here is a link to an article I read just this weekend, sent to me from themighty.com. I encourage everyone to read it, and think about the questions being asked. Let's see how we would answer those same questions!
https://themighty.com/topic/autism-spectrum-disorder/autistic-people-answer-questions-about-autism
@auntieoakley @mamacita @jimhd and others, please, let's start with question #1

Interested in more discussions like this? Go to the Autism (ASD) group.

-If I could tell the world one thing about autism, what would it be?

There are as many forms and types of autism as there are people diagnosed with it. We learn to mask our true selves, it seems, to be able to get along in this world in general. Do we want to? For me, "no" with a capital "N"! But it is how I have to be many times, in order to semi-successfully navigate daily and the interactions with others. But I am less shy about telling people now that I have Aspergers Syndrome, and those who know me even for a few minutes, and are tuned in to this, immediately know by subtle signs they observe.
Ginger

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If I could tell the world one thing it would be;
I am not more or less than you, just different from you. I learn differently, I feel emotions differently, I see the same picture of life, I just see it differently. I am a unique whole person.

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Hello!!!!! How are you? I've been hoping and praying I would hear from you.
So much going on here.

I'll get my grandson to help me log back on to Mayo Clinic. Everything has
changed.

Love,
Mamacita

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@mamacita

Hello!!!!! How are you? I've been hoping and praying I would hear from you.
So much going on here.

I'll get my grandson to help me log back on to Mayo Clinic. Everything has
changed.

Love,
Mamacita

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@mamacita I am looking forward to hearing more from you! I've missed your wisdom.
Ginger

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@mamacita

Hello!!!!! How are you? I've been hoping and praying I would hear from you.
So much going on here.

I'll get my grandson to help me log back on to Mayo Clinic. Everything has
changed.

Love,
Mamacita

Jump to this post

Hugs and much love back. Will try to get logged in sometime this weekend.

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My stepson who is an adult is on the autism spectrum and is low functioning. He needs supervision 24/7. It makes me very, very sad that there is awareness and services for children with autism but once they become adults there is very little available. I read a research article awhile back that indicated the vast majority of adults with autism live with their parents because of unavailable resources.

This is what I would tell the world. Little kids with autism grow up to be adults. They need support from our society and culture.

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@naturegirl5

My stepson who is an adult is on the autism spectrum and is low functioning. He needs supervision 24/7. It makes me very, very sad that there is awareness and services for children with autism but once they become adults there is very little available. I read a research article awhile back that indicated the vast majority of adults with autism live with their parents because of unavailable resources.

This is what I would tell the world. Little kids with autism grow up to be adults. They need support from our society and culture.

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Absolutely! My grand-nephew is in the same situation – he now lives in a group home because after 20 years, my brother, his grandfather cannot handle his 5'10" 250 lbs when he gets upset. Sadly, they have tried for years to find a place that is more than a "warehouse", and it seems every time they do, management changes and the services lapse again.
We have several higher-functioning family members as well, and the only way they get help is from family – fortunately there are many of us – even my kids step in to help with things like supporting social skill development.
One of the hardest things is finding a suitable, supportive workplace, other than a "sheltered workshop." I have an acquaintance who starts teaching workplace skills to kids on the spectrum at 14, but the state ends services at their 22nd birthday – even if they are "not quite ready." These poor young adults end up living in their parents basement or a group home and watching TV. What a waste!
Sue

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@mamacita

Hugs and much love back. Will try to get logged in sometime this weekend.

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💕❤️💕❤️ yippee❣️

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The second question in the article I referenced at the beginning of this discussion is this:

What were some things (behaviors, thoughts, feelings, symptoms) that you were surprised to learn were related to autism?

For me, the depression and anxiety issues many of us relate to. Then again, thinking about how we have tried to fit in and understand our unique situation, it is too far-fetched to lean towards the depression and all.

What's yours?
Ginger

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When I was finally diagnosed, I found out why I walked on my toes when I was young. I don’t anymore due to extreme disapproval from family, but I found it interesting to know.
I learned about stimming, no I don’t do this just to annoy others. Lol
I was surprised to learn that hyper focused learning isn’t really unique.
I am not the only one that tunes out everything while I consume every available scrap of information I can find about a topic before moving on to the next. My head is full of useless information. Hahahaa . I am really good at trivia.
I was surprised but happy to understand many of the ways I interact or don’t interact with others. In the years since, I still struggle with giving myself permission to participate differently or not at all.
Anyone else have these?

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@auntieoakley

When I was finally diagnosed, I found out why I walked on my toes when I was young. I don’t anymore due to extreme disapproval from family, but I found it interesting to know.
I learned about stimming, no I don’t do this just to annoy others. Lol
I was surprised to learn that hyper focused learning isn’t really unique.
I am not the only one that tunes out everything while I consume every available scrap of information I can find about a topic before moving on to the next. My head is full of useless information. Hahahaa . I am really good at trivia.
I was surprised but happy to understand many of the ways I interact or don’t interact with others. In the years since, I still struggle with giving myself permission to participate differently or not at all.
Anyone else have these?

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Yes, I have a good measure of many features Chris mentioned. Rather than trivia I excelled in finding lost things. I was the family go to whenever any thing got misplaced. I can remember finding a lost ring in a large vacant lot of sand on a island for a neighbor as a child too. My ability in this arena has diminished as years march on sadly.

I was always a collector of all things trivia however, and amassed an impressive rock collection in my youth that my parents allowed me to keep when we moved (poor movers). I even have a folder of photos of neighbors I have found over the years in places like inside books in a neighborhood book exchange box. I plan to make a collage out of them. I have collected my family's cast-offs over the years to the point they avoid giving them to me now. I repurpose them as a hobby, a sibling says I am very good a repurposing things.

Writing and spelling has always been a struggle for me. I was diagnosed with dyslexia first. I am able to look at a word and know I have misspelled it though. Overall, I have used avenues such as I've mentioned to fill my days, avoiding writing and interacts with others often. But now due to the pandemic less interactions is no longer considered out of place!

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@linh

Yes, I have a good measure of many features Chris mentioned. Rather than trivia I excelled in finding lost things. I was the family go to whenever any thing got misplaced. I can remember finding a lost ring in a large vacant lot of sand on a island for a neighbor as a child too. My ability in this arena has diminished as years march on sadly.

I was always a collector of all things trivia however, and amassed an impressive rock collection in my youth that my parents allowed me to keep when we moved (poor movers). I even have a folder of photos of neighbors I have found over the years in places like inside books in a neighborhood book exchange box. I plan to make a collage out of them. I have collected my family's cast-offs over the years to the point they avoid giving them to me now. I repurpose them as a hobby, a sibling says I am very good a repurposing things.

Writing and spelling has always been a struggle for me. I was diagnosed with dyslexia first. I am able to look at a word and know I have misspelled it though. Overall, I have used avenues such as I've mentioned to fill my days, avoiding writing and interacts with others often. But now due to the pandemic less interactions is no longer considered out of place!

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My family called my home, the mom house. Because I learned to save and reuse everything from my grandmother who went through the depression. We aren’t hoarders, we freely give away most anything that someone needs.
Surprisingly to most folks, I can pretty much pinpoint the location of almost anything in my house, or in my shop.

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