Adults On The Autism Spectrum

Posted by Mamacita, Volunteer Mentor @mamacita, Apr 29, 2018

Maybe you were really shy as a child. Perhaps you took home a huge stack of books from the school library, read them, and returned them the next day. Or did your best friend find you crying in your closet, unable to answer the question “Why?” At any rate, your life could be traced to the Self-Help section of the local bookstore. Unfortunately, most of the books were not much help. ADHD seemed to fit, at times. Your shrink said you might be Bi-Polar, although she wasn’t really certain. All you knew was that you rarely fit in, anywhere. One day at work, it hit you square in the face: I don’t speak these people’s language! Really, it was like you were all playing this game, and everyone knew the rules but you. You couldn’t tell a joke, and you never “got” any joke your co-worker tried to tell you. People started getting annoyed with you, because you had a memory like a steel trap. They didn’t appreciate it when you called them on the carpet. Who knew? This was my life, and worse. I finally aced several tests that pointed me to the answer to my questions. The Autism Spectrum. Guess what? Little kids with Autism grow up to be Adults with Autism. Diagnosed late in life? This is the place for you!

@mamacita

Hi everyone! How was your day? Mine was super busy, with shopping, cleaning, and getting my pedicure. That is one of the girly things I do once a month to pamper myself. You sit in a massage chair and it is just terrific. But I digress. We have an announcement to make! Our group will have a new name very soon to reflect who we are and what we do here. We are growing, and not just in numbers. So stick around, ladies and gents, the show is about to begin! ( Cue the Fiftie's TV Music!) Until we meet again, MamacitaLucita

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Hello, @sirgalahad — it is good, indeed, that genetic links and causal agents are being discovered.

I notice that you were typing in ALL CAPS in this post on the paper. You'll notice that we advise against using all caps in the community guidelines https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/. That's because all caps is considered shouting in online communications. However, a few members on Connect have to or prefer to use all caps due to typing difficulties (sore hands) or eyesight issues. Is that why you use all caps sometimes?

@mamacita

Hi everyone! How was your day? Mine was super busy, with shopping, cleaning, and getting my pedicure. That is one of the girly things I do once a month to pamper myself. You sit in a massage chair and it is just terrific. But I digress. We have an announcement to make! Our group will have a new name very soon to reflect who we are and what we do here. We are growing, and not just in numbers. So stick around, ladies and gents, the show is about to begin! ( Cue the Fiftie's TV Music!) Until we meet again, MamacitaLucita

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I get lazy and forget I am not threatening anyone and I am, conscious of caps as an offence to others and thanks for the reminder

@gailb

@mamasitalucita

I am blown away by your wisdom and gifted writing skills. Your warm and loving responses to others posting on this thread, as well as to those who haven't posted, leave me feeling loved, accepted, and comfortable in my own body. I have chronic pain, the same back problems you do, diabetes, depression (controlled by Citalopram) and PTSD. Even so, I have led a fantastic life, pressing on thru all my fears, pain, and hypervigilence. I was exhausted at times, so the spoon theory makes so much sense to me.

Now that I'm retired, I sometimes feel like I'm being lazy because I don't work enough around the house. It's taken me about 5 years to really retire and let go of the things I was good at and got paid lots of money to do. Alas, my body forced me to stop working so hard. My back gave out while I was on a consulting assignment in the Denver area, and I was forced to get a wheelchair and fly home. That was my last work. I had a laminectomy within a month of returning home. Thankfully, it relieved a great deal of my pain, and further therapy using Active Release Technique has relieved most of my remaining back pain. My husband and I live with my stepdaughter in her beautiful, huge new home. She has a housekeeper who comes 3 times a week and not only cleans and does laundry, but also does the grocery shopping and cooks on those days she's here. That is wonderful, and I love her housekeeper who has been with her for 26 years.

But, on the 4th of July, my stepdaughter had a huge family and friends gathering which was very nice. I helped get the yard cleaned as much as I could, and made a fresh fruit plate as my contribution to the food, but that's all I could do. During the party, I ended up in my bedroom for a nap. I thought I was just taking a break, but ended up falling asleep. I then made it through til 10 pm, and had to go to bed for the night. My problem is I worry about not being able to help do any of the cleanup after the party. I so want to be useful and not take up too much space in my stepdaughter's home, which she asked us to come and live at no cost to us. My fears of not doing enough to deserve it sometimes get in the way of my just taking care of myself emotionally.

Your thoughts and the feelings you express remind me that I have space in this world and that I only have so many spoons to use each day. Sometimes just getting up, showering and making the bed is as much as I can handle. Even though I have some fun shopping to do for new bedroom furniture, I haven't had the energy to go do it. Decorating is something I love to do, but I don't have the energy most days now. My stepdaughter works so hard and is constantly busy. I worry about her level of activity as it will take a toll one of these days. Next to her I feel particularly "lazy." I need to remember that I was once as active as is she, and that it's OK for me to relax now and not worry about impressing anyone, least of all myself!

I so appreciate your wisdom and beautiful words @mamasitalucita. I think I'm a neuro, but I totally relate to you. We ARE better together. Thank you for listening.

Gail
Volunteer Mentor

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You are a very special person. I could listen to you all day long. Well, except for the middle part of my day, where I am under doctors orders to put my feet up and relax, take time for myself, and just breathe. That usually includes taking a peek at Mayo Clinic to see what's going on. Or watching a bit of British tv. Life is beautiful. Moving past pain tells me so. Blessings,
Mamacita

@gailb

@mamasitalucita

I am blown away by your wisdom and gifted writing skills. Your warm and loving responses to others posting on this thread, as well as to those who haven't posted, leave me feeling loved, accepted, and comfortable in my own body. I have chronic pain, the same back problems you do, diabetes, depression (controlled by Citalopram) and PTSD. Even so, I have led a fantastic life, pressing on thru all my fears, pain, and hypervigilence. I was exhausted at times, so the spoon theory makes so much sense to me.

Now that I'm retired, I sometimes feel like I'm being lazy because I don't work enough around the house. It's taken me about 5 years to really retire and let go of the things I was good at and got paid lots of money to do. Alas, my body forced me to stop working so hard. My back gave out while I was on a consulting assignment in the Denver area, and I was forced to get a wheelchair and fly home. That was my last work. I had a laminectomy within a month of returning home. Thankfully, it relieved a great deal of my pain, and further therapy using Active Release Technique has relieved most of my remaining back pain. My husband and I live with my stepdaughter in her beautiful, huge new home. She has a housekeeper who comes 3 times a week and not only cleans and does laundry, but also does the grocery shopping and cooks on those days she's here. That is wonderful, and I love her housekeeper who has been with her for 26 years.

But, on the 4th of July, my stepdaughter had a huge family and friends gathering which was very nice. I helped get the yard cleaned as much as I could, and made a fresh fruit plate as my contribution to the food, but that's all I could do. During the party, I ended up in my bedroom for a nap. I thought I was just taking a break, but ended up falling asleep. I then made it through til 10 pm, and had to go to bed for the night. My problem is I worry about not being able to help do any of the cleanup after the party. I so want to be useful and not take up too much space in my stepdaughter's home, which she asked us to come and live at no cost to us. My fears of not doing enough to deserve it sometimes get in the way of my just taking care of myself emotionally.

Your thoughts and the feelings you express remind me that I have space in this world and that I only have so many spoons to use each day. Sometimes just getting up, showering and making the bed is as much as I can handle. Even though I have some fun shopping to do for new bedroom furniture, I haven't had the energy to go do it. Decorating is something I love to do, but I don't have the energy most days now. My stepdaughter works so hard and is constantly busy. I worry about her level of activity as it will take a toll one of these days. Next to her I feel particularly "lazy." I need to remember that I was once as active as is she, and that it's OK for me to relax now and not worry about impressing anyone, least of all myself!

I so appreciate your wisdom and beautiful words @mamasitalucita. I think I'm a neuro, but I totally relate to you. We ARE better together. Thank you for listening.

Gail
Volunteer Mentor

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Dear @gailb,
Yes, I think you just might be Neurotypical. Yet the Good Lord appears to have gifted you with a rare ability to step into someone else's shoes. Your depth of compassion amazes me and makes my heart happy. One practical note here while I am thinking of it: Look for your new furniture online. You may not even have to step inside a store to purchase it. As long as you ask around, do your research, and make sure it's a reputable company, there's no need to trek from store to store, using up all your "spoons" for the day. You are definitely not "lazy." Just think of yourself as a solar panel, storing up energy! Happy furniture hunting!
Light and love,
Mamacita

I worry about people in my family thinking I am lazy, when I have done all I can do and must stop. I do not like to play the " sick " card. But if you have read my story, you know the laundry list of conditions I own up to. Most are in excellent control these days. Yet here I am, Autistic as all get out. We say that in the South. I'm not sure if the rest of you have that saying. Be that as it may, when I make an extra special effort to move out of my comfort zone, I will pay for it the next day. I would actually say that for me, at my age, it would normally take me two peaceful days at home to recover from one full day of work and socializing.

We had so much fun on Monday. My cousin and I laughed and talked as we worked to get her new classroom ready for the August first day of school. The school was there when I attended junior high just up the street. It's that old. I believe it might have the original floors. I know for a fact the original windows are there because I attemped to clean them. The window ledges crumbled under my attempts to eradicate mold. Needless to say, I moved on from that task to something less disastrous: scrubbing chairs.

We broke for lunch, where we joined another cousin at a local Mexican restaurant. I did stick to my low carb diet, which does seem to help me think clearer. Watch the Magic Pill, I believe it is on Netflix. Fantastic documentary. After lunch we returned to school and worked steadily until midafternoon. I was pretty tired by then and frankly, ready to go home. I enjoyed helping my cousin prepare for a new school year. I am retired, so there are no classrooms for me to prepare anymore.

It took me almost two hours to drive home. That's not an easy task when one has anxiety issues from time to time. Ok, every day. But when things are stable, I do alright. Well, passable anyway. But when I got home, it seemed as if I was in the center of a tornado.. The center is supposed to be quiet. But not for an Autistic person. I see all the wind swirling round and round and I feel like my head will explose. I was so overwhelmed by all the experiences and information I'd received that day, I just had to lie down on the sofa. I could barely speak. My Grandson made me a bed on the sofa. I gratefully headed there and stayed put for hours. You see, I had spent much of the day trying to do what neurotypicals do, and ignoring what I typically do. I deliberately chose to do that, because I truly wanted to help my cousin and spend time with her. I avoided a meltdown by doing self care.

The important thing to take away from this experience that I have shared with you, is this: If you are Autistic, Aspie, or however you refer to yourself, if you plan to engage in an activity that pushes your boundaries, prepare ahead for the experience. I hadn't brought enough water with me. Big mistake. Water is my go to. If I have that and a handful of snacks I am good to go. Another thing: Don't purchase a new phone right before you attempt any boundary pushing event. You won't be able to use it properly and that will

contribute to your anxiety level. Not good.

Change is good. New brain circuitry can develop if we remain positive. Just remember to plan ahead as much as you can, so that you can take proper care of yourself. And by the way, I still am so glad I went. It made me stretch to a higher level. And I learned what not to do ever again. Until next time, my beautiful Autie friends,
Mamacita

@sirgalahad

hugsand cuddles

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Thanks, I needed that. There is still so much activity at my house. Hubby does not feel 100% due to one of his ailments. But I am grateful we still have each other. Thankful for good friends who care about me. Pug love,
Mamacita

Many of you have met Gail, @gailb, one of our Connect volunteer mentors. Today she was featured in our member spotlight. Please take a look and enjoy getting to know more about @gailb and her story, here:

Back and Neck Pain Lead to New Connections: Meet @gailb: https://connect.mayoclinic.org/newsfeed-post/gailb/

"Look for the helpers." That's what Mr. Rpgers said. I believed it then and I believe it now. Gail is one of those helpers. Whether you have chronic pain, depression, or find yourself with questions about Autism, the helpers are here for you. The mentors, moderators, and director of Mayo Clinic Connect work together to help others in every way they can. It is an honor and a great pleasure to know this wonderful person.

@sirgalahad

hugsand cuddles

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Dear @sirgalahad, thank you so much for your virtual hugs and warm fuzzies. Today I had an appointment with one person I already knew, and another person I had never met before. My anxiety level was up a bit, considering I really wanted to make a good impression. I cannot look at myself in the mirror and see what is really there. If I am depressed, which I have been recently, I will not think favorably of my reflection. Fortunately, a new medicine has been added to my regimen and I am able to function. Your hugs from afar mean a lot to this Autie. We are all better togethet.
Mamacita

@mamacita

I was always different. As a small child, I didn't realize I was different. I only knew as early as the age of three or four that I wanted to kill myself. I had it all planned out how I would do that. If I failed, I planned to run away from home, and I had that figured out as well. That would mean leaving my beloved Father behind. But I knew my Mother didn't care about me, so, I figured I had no choice. She was mentally ill, having suffered terribly at the hands of an abusive male relative for many years. She would frequently tell me all kinds of things that unsettled me. That she was not my "real" mother, that she was just watching me until she could come to get me. In a very real sense, she was not my real mother. My "real" Mother was one of two ladies hired by my Father to take care of me when I was born. My biological mother had a difficult time accepting motherhood. She had some sort of breakdown when I was born, and was unable to care for me. After a year, my parents could no longer afford two nannies. But they let the wrong one go. Just like in the film the Help, I was that little girl crying and screaming, begging the woman who had loved her and raised her not to go. I could read before I went to school, and was used as a teacher's aide to help other kids learn to read and write. I was playing the piano for church services at the age of six, and teaching my third grade class their music lessons at the insistence of my teacher. I had superior hearing, off the charts, actually, when I was finally tested as an adult. I read a huge stack of books every day after school, returned them the next day, then checked out another stack. I felt that if I read enough, one day I would figure it all out. I ended up becoming a Social Worker, then a Special Educator. I read temple Grandin's book, Thinking In Pictures, and was stunned. I had not known until then, that other people did not think in pictures. This was a very big deal to me. I worked directly under a Psychologist for the school system for three years, trying to help a child on the Spectrum to find her place. I suspected at the time that I had ADHD, and had already been diagnosed with Depression. I was already collecting labels by the fistful, and certainly did not desire anymore. But I always knew there was more to me than just depression. Long after I was transferred to another position in the school system, I began studying more about Autism. It was only after the ADHD medicines had become ineffective that I began to understand there was indeed a Spectrum, and that all people with Autism did not present exactly the same way. I am very sociable, for example. I never meet a stranger. I know now that I was miserable for so long, I want to do everything I can to encourage other people struggling with life. Around five or so years ago, I think, I began to read bits and pieces from a woman named Samantha Craft. She wrote Everyday Aspergers, and had a long list of traits that might present in females. This was very significant, because until about this time, most medical professionals didn't recognize Autism in females, except for extreme cases. We know now that girls are much better at "masking" or mimicking what is considered to be normal or typical behavior. After remaining open to the possibility that I could be on the Spectrum, I began to take a series of tests that are commonly given as part of the process in determining Spectrum disorders. It must be understood that I was extremely motivated in determining the truth. I had absolutely no desire whatsoever to attempt to make my scores high enough to "fit" the diagnosis. For me, this was a life or death matter. I have limited access to competent medical professionals who have had good success in working with persons on the Spectrum. Where I live, the closest place would be Birmingham, AL. I am raising a thirteen year old, have various health conditions, and a dear husband who is on immunosuppressant therapy. My days are filled with Homeschool and cleaning, so that his many allergies to not put him in respiratory distress. If I ever manage to have the time to get an appointment with a really good Psychiatrist an hour and a half's drive away, it will be just one more affirmation. I know where I come from and I know where I belong. The Spectrum is a perfect fit for me. My brain is just wired differently. All my senses are heightened to the nth degree. Things that used to torment me, now make sense. Sorry this is so long. I have actually left out an awful lot.

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Dear ones, I am friends with those who believe that vaccines cause Autism. I am friends with those who believe our brains are constructed differently from the moment of conception. When I started working in the field years ago, we really didn't know very much. We basically hoped, prayed, and flew by the seat of our pants. Early on we knew that too much clutter would distract our precious little Auties. (We didn't refer to them in that way then. We used the term " on the Spectrum.") We covered up the books on the shelves with plain white curtain material, and only used one object at the time in instruction. I used puppets early on, and made the puppet a naughty little bear, who was a kindergartener. I would show them the "wrong" way of doing something by having the little bear act it out. The children would squeal with delight at his antics, and shout "No, no, that's not the way to do it!!!!" Then together, hand over hand, we would act out the correct way. Music was good therapy during this time. I found one particular radio station that seemed to soothe them. No other station would do. I tried. Really, I tried. ABA was the going thing back then and we were desperate In our sheltered little corner of the South, we only used rewards for completed tasks. Never punishment. We allowed them to "stim " which again, seems to be the going thing in Autism circles now. Good thing. Researchers and teachers alike are saying that even Neurotypicals "stim." So it is considered appropriate for them to express their feelings. We didn't take away privileges for tantrums. We added more PE time. Try explaining that to a group of regular education professionals. They tried to understand, some of them. But many just thought that we were crazy and didn't know what we were doing. Well, they were halfway right. We were crazy in love with this precious child that so many wanted to give up on. We knew there was a purpose and a plan. Heaven itself was our teacher and guide. So if you or someone you love is Autistic, read every book you can get your hands on. Check out support groups and blogs online and in the community . Look for the ones who support the child in their gifts. Look for the ones who support the rights of those who speak differently, or not at all. We come in all sizes, shapes, and colors. We hurt, we feel, deeply. We are different, not less than. And we make very loyal friends once you understand that we think outside the box. Shalom,
Mamacita

I am not Rain Man, although I do crave order and simplicity. I do not like surprises. I am not the Good Doctor. I do not see every aspect of my life in flashes on a computer screen, pictures drawn in brilliant colors. I am not apathetic. I just don't understand all the social cues and rules that abound in our society. I think outside of the box, and sometimes that doesn't make any sense to the average person. I am not arrogant. I do not think that I am better than anyone else. It's just that I know that I am not less than. I do want friends. I adore people. I enjoy helping wherever I can. But if I have been with a group all day, I need to go home and just read a book or watch some mindless tv. I need down time to recharge my batteries. I am hypervigilant. My senses are extremely acute. They wear me out. They also come in very handy. I have other conditions alongside my differently wired brain. For some of these, medication is beneficial. Cognitive Behavioral Therapists come in handy as well. I do not have good coordination. It's almost as if I don't quite know where to put my hands, or how to walk correctly. I collect things and know lots of useless bits of trivial information. I still love to spin around. But these days, doing so might get me a broken hip. I stim with my bracelets. Lots of regular folks do that as well. So, do you feel like you know me a little better? Good. Love you all,
Mamacita

@mamacita

I was always different. As a small child, I didn't realize I was different. I only knew as early as the age of three or four that I wanted to kill myself. I had it all planned out how I would do that. If I failed, I planned to run away from home, and I had that figured out as well. That would mean leaving my beloved Father behind. But I knew my Mother didn't care about me, so, I figured I had no choice. She was mentally ill, having suffered terribly at the hands of an abusive male relative for many years. She would frequently tell me all kinds of things that unsettled me. That she was not my "real" mother, that she was just watching me until she could come to get me. In a very real sense, she was not my real mother. My "real" Mother was one of two ladies hired by my Father to take care of me when I was born. My biological mother had a difficult time accepting motherhood. She had some sort of breakdown when I was born, and was unable to care for me. After a year, my parents could no longer afford two nannies. But they let the wrong one go. Just like in the film the Help, I was that little girl crying and screaming, begging the woman who had loved her and raised her not to go. I could read before I went to school, and was used as a teacher's aide to help other kids learn to read and write. I was playing the piano for church services at the age of six, and teaching my third grade class their music lessons at the insistence of my teacher. I had superior hearing, off the charts, actually, when I was finally tested as an adult. I read a huge stack of books every day after school, returned them the next day, then checked out another stack. I felt that if I read enough, one day I would figure it all out. I ended up becoming a Social Worker, then a Special Educator. I read temple Grandin's book, Thinking In Pictures, and was stunned. I had not known until then, that other people did not think in pictures. This was a very big deal to me. I worked directly under a Psychologist for the school system for three years, trying to help a child on the Spectrum to find her place. I suspected at the time that I had ADHD, and had already been diagnosed with Depression. I was already collecting labels by the fistful, and certainly did not desire anymore. But I always knew there was more to me than just depression. Long after I was transferred to another position in the school system, I began studying more about Autism. It was only after the ADHD medicines had become ineffective that I began to understand there was indeed a Spectrum, and that all people with Autism did not present exactly the same way. I am very sociable, for example. I never meet a stranger. I know now that I was miserable for so long, I want to do everything I can to encourage other people struggling with life. Around five or so years ago, I think, I began to read bits and pieces from a woman named Samantha Craft. She wrote Everyday Aspergers, and had a long list of traits that might present in females. This was very significant, because until about this time, most medical professionals didn't recognize Autism in females, except for extreme cases. We know now that girls are much better at "masking" or mimicking what is considered to be normal or typical behavior. After remaining open to the possibility that I could be on the Spectrum, I began to take a series of tests that are commonly given as part of the process in determining Spectrum disorders. It must be understood that I was extremely motivated in determining the truth. I had absolutely no desire whatsoever to attempt to make my scores high enough to "fit" the diagnosis. For me, this was a life or death matter. I have limited access to competent medical professionals who have had good success in working with persons on the Spectrum. Where I live, the closest place would be Birmingham, AL. I am raising a thirteen year old, have various health conditions, and a dear husband who is on immunosuppressant therapy. My days are filled with Homeschool and cleaning, so that his many allergies to not put him in respiratory distress. If I ever manage to have the time to get an appointment with a really good Psychiatrist an hour and a half's drive away, it will be just one more affirmation. I know where I come from and I know where I belong. The Spectrum is a perfect fit for me. My brain is just wired differently. All my senses are heightened to the nth degree. Things that used to torment me, now make sense. Sorry this is so long. I have actually left out an awful lot.

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hi Marmacita , based on a scientific medical research paper from BOSTON UNIVERSITY WRITTEN GILBERT AND MAN .called the Fundamental Elements in autism: From Neurogenesis and Neurite Growth to Synaptic Plasticity. This paper identifies 30 different genes involved in the physiological changes to the brain at the making of the brain at theend of the first Trimester of a babies development and its this point where the changes occur and leading to a child being on the ASD

@mamacita You make yourself known in such a refreshing way! Teresa

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