How You Experience Autism

Posted by Ginger, Volunteer Mentor @gingerw, 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

@merpreb and @gingerw , good Monday morning to you.

It occurred to me that my response to your question about assessment and diagnosis was more centered on childhood Autism.

Ginger addressed at length about the assessment process for adults. I dont have too much to add at this point, other than my own experience.

There are many tests out there that one can take to give you an idea of what is going on. Many really good books and articles by well known authors. I will mention some of my favorites later. Many adults, like me, were misdiagnosed so many times. ADD is one of my "gifts." And honestly, when I took the medication for it, it helped a lot. Until 3:30pm every day.

And you know what? ADD medicine did nothing for my anxiety and depression. Nothing for the "looping" behavior that is so common in those on the Spectrum. And what about the anxiety that I was only just recently diagnosed with, but have had all of my life?

Let me tell you my non professional opinion. Of COURSE people on the Spectrum are more likely to have extreme anxiety than just the ordinary person walking down the street. When your hearing is off the charts, and you hear Everything….when all of your senses are maxed out, there is going to be a certain level of anxiety. Period.

I masked the other day at the hospital. It is so easy for me to do that, I just naturally get into that space in my head and run with it. Unconciously. Until later, when I rehash what I said and did . And I wonder why I wasn't authentic.

Today I probably looked like a homeless person, as I trekked to the neighborhood store to purchase coffee. We were out. Having coffee in the morning is a necessity. More important than being dressed appropriately or having makeup on. I looked like a Lumberjack's wife, circa 1850. Buffalo plaid flannel jacket over a Brown Praire Skirt. Yes, I was quite the sight. The jacket belongs to my husband, and it comforts me.

But you know what? The little check out girl at the register smiled at me and asked me how I was doing. Even though I was a mess. She still made that connection. That's real people , right there.

Those kinds of people are the salt of the earth, by the way. Anyway, we adult Auties tend to mask so well, want to "fit in" so well, that, we lose ourselves in the process. That prevents an accurate diagnosis, in all too many cases.

Next time I will bring up a hot topic….stimming. What is it? What does it look like? What is it's purpose? Why should we permit it?

You guys are the best. That's why I needed to check in with you, see how you're doing.

Until next time,
Mamacita Jane

REPLY
@mamacita

@merpreb and @gingerw , good Monday morning to you.

It occurred to me that my response to your question about assessment and diagnosis was more centered on childhood Autism.

Ginger addressed at length about the assessment process for adults. I dont have too much to add at this point, other than my own experience.

There are many tests out there that one can take to give you an idea of what is going on. Many really good books and articles by well known authors. I will mention some of my favorites later. Many adults, like me, were misdiagnosed so many times. ADD is one of my "gifts." And honestly, when I took the medication for it, it helped a lot. Until 3:30pm every day.

And you know what? ADD medicine did nothing for my anxiety and depression. Nothing for the "looping" behavior that is so common in those on the Spectrum. And what about the anxiety that I was only just recently diagnosed with, but have had all of my life?

Let me tell you my non professional opinion. Of COURSE people on the Spectrum are more likely to have extreme anxiety than just the ordinary person walking down the street. When your hearing is off the charts, and you hear Everything….when all of your senses are maxed out, there is going to be a certain level of anxiety. Period.

I masked the other day at the hospital. It is so easy for me to do that, I just naturally get into that space in my head and run with it. Unconciously. Until later, when I rehash what I said and did . And I wonder why I wasn't authentic.

Today I probably looked like a homeless person, as I trekked to the neighborhood store to purchase coffee. We were out. Having coffee in the morning is a necessity. More important than being dressed appropriately or having makeup on. I looked like a Lumberjack's wife, circa 1850. Buffalo plaid flannel jacket over a Brown Praire Skirt. Yes, I was quite the sight. The jacket belongs to my husband, and it comforts me.

But you know what? The little check out girl at the register smiled at me and asked me how I was doing. Even though I was a mess. She still made that connection. That's real people , right there.

Those kinds of people are the salt of the earth, by the way. Anyway, we adult Auties tend to mask so well, want to "fit in" so well, that, we lose ourselves in the process. That prevents an accurate diagnosis, in all too many cases.

Next time I will bring up a hot topic….stimming. What is it? What does it look like? What is it's purpose? Why should we permit it?

You guys are the best. That's why I needed to check in with you, see how you're doing.

Until next time,
Mamacita Jane

Jump to this post

Good morning, @mamacita

You give such good information with personal examples/experiences thrown into the pot (so to speak). Thanks for that! I'm looking forward to learning about stimming. Hmmm, wonder what this is like?

REPLY
@mamacita

@merpreb and @gingerw , good Monday morning to you.

It occurred to me that my response to your question about assessment and diagnosis was more centered on childhood Autism.

Ginger addressed at length about the assessment process for adults. I dont have too much to add at this point, other than my own experience.

There are many tests out there that one can take to give you an idea of what is going on. Many really good books and articles by well known authors. I will mention some of my favorites later. Many adults, like me, were misdiagnosed so many times. ADD is one of my "gifts." And honestly, when I took the medication for it, it helped a lot. Until 3:30pm every day.

And you know what? ADD medicine did nothing for my anxiety and depression. Nothing for the "looping" behavior that is so common in those on the Spectrum. And what about the anxiety that I was only just recently diagnosed with, but have had all of my life?

Let me tell you my non professional opinion. Of COURSE people on the Spectrum are more likely to have extreme anxiety than just the ordinary person walking down the street. When your hearing is off the charts, and you hear Everything….when all of your senses are maxed out, there is going to be a certain level of anxiety. Period.

I masked the other day at the hospital. It is so easy for me to do that, I just naturally get into that space in my head and run with it. Unconciously. Until later, when I rehash what I said and did . And I wonder why I wasn't authentic.

Today I probably looked like a homeless person, as I trekked to the neighborhood store to purchase coffee. We were out. Having coffee in the morning is a necessity. More important than being dressed appropriately or having makeup on. I looked like a Lumberjack's wife, circa 1850. Buffalo plaid flannel jacket over a Brown Praire Skirt. Yes, I was quite the sight. The jacket belongs to my husband, and it comforts me.

But you know what? The little check out girl at the register smiled at me and asked me how I was doing. Even though I was a mess. She still made that connection. That's real people , right there.

Those kinds of people are the salt of the earth, by the way. Anyway, we adult Auties tend to mask so well, want to "fit in" so well, that, we lose ourselves in the process. That prevents an accurate diagnosis, in all too many cases.

Next time I will bring up a hot topic….stimming. What is it? What does it look like? What is it's purpose? Why should we permit it?

You guys are the best. That's why I needed to check in with you, see how you're doing.

Until next time,
Mamacita Jane

Jump to this post

@mamacita Good morning back to you. I dress for my comfort. Where I lived before, my wardrobe was a mix of what-to-wear-to-fit-in-kinda, and what I was comfortable in. Here, in this little town, I have been able to ditch for the most part, those clothes that were not all that comfortable, and be "me" more. right now my favorite over jacket is a sherpa fleece lined plaid men's jacket. It appeals to my comfort of feeling the soft fleece embrace me.

On my left wrist I wear a braided silver bracelet, 24/7. There is a small silver loop near the catch that can be manipulated. If you watch, you will find me often automatically going to the little loop, rotating it over-and-over, creating that sense of calm I need when anxious, a tangible relief. I used to wear a cuff bracelet and constantly run my fingers over the pattern. When I wear my medical alert bracelet, I can use features of that to stim and calm me. Each autie person has a favorite way to stay grounded, as it were. At times when it's required to not have the bracelet, I feel very anxious and nervous. Should it be allowed? Absolutely, for me.
Ginger

REPLY
@mamacita

@merpreb and @gingerw , good Monday morning to you.

It occurred to me that my response to your question about assessment and diagnosis was more centered on childhood Autism.

Ginger addressed at length about the assessment process for adults. I dont have too much to add at this point, other than my own experience.

There are many tests out there that one can take to give you an idea of what is going on. Many really good books and articles by well known authors. I will mention some of my favorites later. Many adults, like me, were misdiagnosed so many times. ADD is one of my "gifts." And honestly, when I took the medication for it, it helped a lot. Until 3:30pm every day.

And you know what? ADD medicine did nothing for my anxiety and depression. Nothing for the "looping" behavior that is so common in those on the Spectrum. And what about the anxiety that I was only just recently diagnosed with, but have had all of my life?

Let me tell you my non professional opinion. Of COURSE people on the Spectrum are more likely to have extreme anxiety than just the ordinary person walking down the street. When your hearing is off the charts, and you hear Everything….when all of your senses are maxed out, there is going to be a certain level of anxiety. Period.

I masked the other day at the hospital. It is so easy for me to do that, I just naturally get into that space in my head and run with it. Unconciously. Until later, when I rehash what I said and did . And I wonder why I wasn't authentic.

Today I probably looked like a homeless person, as I trekked to the neighborhood store to purchase coffee. We were out. Having coffee in the morning is a necessity. More important than being dressed appropriately or having makeup on. I looked like a Lumberjack's wife, circa 1850. Buffalo plaid flannel jacket over a Brown Praire Skirt. Yes, I was quite the sight. The jacket belongs to my husband, and it comforts me.

But you know what? The little check out girl at the register smiled at me and asked me how I was doing. Even though I was a mess. She still made that connection. That's real people , right there.

Those kinds of people are the salt of the earth, by the way. Anyway, we adult Auties tend to mask so well, want to "fit in" so well, that, we lose ourselves in the process. That prevents an accurate diagnosis, in all too many cases.

Next time I will bring up a hot topic….stimming. What is it? What does it look like? What is it's purpose? Why should we permit it?

You guys are the best. That's why I needed to check in with you, see how you're doing.

Until next time,
Mamacita Jane

Jump to this post

@mamacita– Good morning. Such wonderful information! I do understand what masking is- I looked it up too. This is so interesting. My nephew use to dance like there was no tomorrow, and hard type dances they were! I used to call him a monkey when he was younger. As he grew and went to college and beyond he hated staying in the room with his family. We were usually out for dinner. Maybe the noise bothered him? I don't know anything about his social life. His mother, I think is the only one who gets through to him right now.
I look forward to learning more from you.
How is your dayghter today?

REPLY
@gingerw

@mamacita Good morning back to you. I dress for my comfort. Where I lived before, my wardrobe was a mix of what-to-wear-to-fit-in-kinda, and what I was comfortable in. Here, in this little town, I have been able to ditch for the most part, those clothes that were not all that comfortable, and be "me" more. right now my favorite over jacket is a sherpa fleece lined plaid men's jacket. It appeals to my comfort of feeling the soft fleece embrace me.

On my left wrist I wear a braided silver bracelet, 24/7. There is a small silver loop near the catch that can be manipulated. If you watch, you will find me often automatically going to the little loop, rotating it over-and-over, creating that sense of calm I need when anxious, a tangible relief. I used to wear a cuff bracelet and constantly run my fingers over the pattern. When I wear my medical alert bracelet, I can use features of that to stim and calm me. Each autie person has a favorite way to stay grounded, as it were. At times when it's required to not have the bracelet, I feel very anxious and nervous. Should it be allowed? Absolutely, for me.
Ginger

Jump to this post

@gingerw– How does this comfort you?

REPLY
@merpreb

@gingerw– How does this comfort you?

Jump to this post

@merpreb The opportunity to manipulate the little ring gives me a way to "burn off" excess emotion/nerves, and is something I can control. To almost anyone else, it is simply a decoration, with no link to a calming device. When I am in a situation with anxiety, or masking, or high emotion, knowing that there sits a simple device to aid me, gives me comfort. Don't know if this makes sense, or not.
Ginger

REPLY

@merpreb, I cannot speak for @ginger, but soft, flannel like materials are soothing to my skin. Almost like a hug. And you've undoubtedly heard about Dr. Temple Grandin, who so wonderfully brought about her theories of firm pressure being necessary for calming us Autues down. (And cattle, too…dont forget the cows!)

From there, we have the weighted blankets and the soft, stretchy lengths of silicone material that Autistic children soothe themselves with in their classrooms. (If it is on their IEP's to do so, that is. ) Swings attached to the ceiling, are helpful to give the children that wonderful rocking motion. Rocking chairs and regular swings should be available to every child on the Spectrum.

Children on the Spectrum should routinely be allowed the "chewy" necklaces, bracelets, and pencils that are specially made just for the purpose of stimming. There are even special brushes made to brush the childs arms, usually done with an OT or in the Special Ed Teacher's room. This releases the pent up energy that builds up because the child is struggling to survive in a Neurotypical setting. With proper supports, these children cannot only survive, they will thrive.

More later…..
Mamacita Jane

REPLY
@gingerw

@merpreb The opportunity to manipulate the little ring gives me a way to "burn off" excess emotion/nerves, and is something I can control. To almost anyone else, it is simply a decoration, with no link to a calming device. When I am in a situation with anxiety, or masking, or high emotion, knowing that there sits a simple device to aid me, gives me comfort. Don't know if this makes sense, or not.
Ginger

Jump to this post

@gingerw– It makes perfect sense. Thank you. Do you tune out what's going around you for a bit while doing this?

REPLY
@mamacita

@merpreb, I cannot speak for @ginger, but soft, flannel like materials are soothing to my skin. Almost like a hug. And you've undoubtedly heard about Dr. Temple Grandin, who so wonderfully brought about her theories of firm pressure being necessary for calming us Autues down. (And cattle, too…dont forget the cows!)

From there, we have the weighted blankets and the soft, stretchy lengths of silicone material that Autistic children soothe themselves with in their classrooms. (If it is on their IEP's to do so, that is. ) Swings attached to the ceiling, are helpful to give the children that wonderful rocking motion. Rocking chairs and regular swings should be available to every child on the Spectrum.

Children on the Spectrum should routinely be allowed the "chewy" necklaces, bracelets, and pencils that are specially made just for the purpose of stimming. There are even special brushes made to brush the childs arms, usually done with an OT or in the Special Ed Teacher's room. This releases the pent up energy that builds up because the child is struggling to survive in a Neurotypical setting. With proper supports, these children cannot only survive, they will thrive.

More later…..
Mamacita Jane

Jump to this post

@mamacita– Wow!

REPLY

@mamacita, @gingerw– Years ago I was at a woman's house for a board meeting. One of her children, a son, was sitting in front of the tv. Then all at once she shot out of her chair and was holding him calm until he was able to gain controll of himself.

REPLY

@merpreb , my soninlove does this very thing for my young Grandson.

What we try to do is have these practices in place before a melt down.

With scheduling and inclusion of these simple to use practices, eventually the number of meltdowns we experience is drastically reduced. With these protocols in place at school and at home, working together, the child eventually learns how to self regulate. She has confidence that she can do what the other kids do. Maybe we have to work at it ten times as much as the NT children. But that's only because your typical school setting is outfitted with only the Neurotypical student in mind. We think outside the box. Sooner or later, that kind of thinking is rewarded.

More to come.

Love and light,
Mamacita Jane

REPLY
@merpreb

@gingerw– It makes perfect sense. Thank you. Do you tune out what's going around you for a bit while doing this?

Jump to this post

@merpreb Actually, I am able to be more "present" in that environment, rather than having an internal war with myself. Does that make sense? I can calm my internal need for flight-or-fight, by fiddling with that little silver ring.
Ginger

REPLY
@gingerw

@merpreb Actually, I am able to be more "present" in that environment, rather than having an internal war with myself. Does that make sense? I can calm my internal need for flight-or-fight, by fiddling with that little silver ring.
Ginger

Jump to this post

@gingerw– Yes, it does. I wonder if this would work for a panic attack I've just started getting them again- infrequent but a royal pain.

REPLY
@mamacita

@merpreb , my soninlove does this very thing for my young Grandson.

What we try to do is have these practices in place before a melt down.

With scheduling and inclusion of these simple to use practices, eventually the number of meltdowns we experience is drastically reduced. With these protocols in place at school and at home, working together, the child eventually learns how to self regulate. She has confidence that she can do what the other kids do. Maybe we have to work at it ten times as much as the NT children. But that's only because your typical school setting is outfitted with only the Neurotypical student in mind. We think outside the box. Sooner or later, that kind of thinking is rewarded.

More to come.

Love and light,
Mamacita Jane

Jump to this post

@mamacita– I would think sooner!

REPLY
@merpreb

@gingerw– Yes, it does. I wonder if this would work for a panic attack I've just started getting them again- infrequent but a royal pain.

Jump to this post

@merpreb It just might. You won't know until you try it out. People may look at your calming actions as "just fiddling with" something, or "geez, can't you sit still?" Yep, I have heard those comment before.

Have you figured out what is triggering your panic attacks?
Ginger

REPLY
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