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!

Children with Autism become adults with Autism. Life lessons can be learned, and no one who is Autistic needs to be ashamed of who they are. We learn how to cope with the noise, the anxiety, the loneliness. We learn that it is better to count on one hand the number of good, decent friends that we have than to fill up our lives with shallow, meaningless relationships. Let us all appreciate and be grateful for the blessings with which we have been showered!

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Got a tad bit overwhelmed while shopping today. Had my Grandson with me and he was looking for a new bicycle. We found the area easily, although they had changed everything around. I love this store, especially when they have good sales! We knew we weren't going to buy it on the spot, though, because we hadn't yet gone to our local " Mom and Pop" store yet. ( We like to support our locally owned merchants whenever possible.) The music was a bit too loud for my super- sonic ears to tolerate. There weren't very many people shopping, no toddlers screeching, babies crying, or rambunctious Kindergartners climbing up display stands. But I felt dizzy, uncomfortable. We had put bug spray in our shopping cart, along with a few gadgets to keep my husband cool in our sweltering summers. I snared a really cool pair of breathable shorts to garden in, and almost went to check out the clearance aisles for gym wear when I suddenly felt I had to leave. This was no panic attack, not really. I have had many, many of those throughout my life. This was something else. I quickly pushed my cart to the first available check out lane. Immediately I could sense another person come right up behind me. Glancing over to my right I saw a young boy, around ten or so, turn on one of those new gadgets that instantly plays music or answers your questions. I couldn't believe he would be so rude as to enter my space and blast me with what passed for music. His eyes met mine and I felt that he was waiting for my response. I cannot look someone in the eye for long periods of time. I had to leave. Now. I checked out as fast as I could, all the while shaking inside. I wanted to "pass" for just a typical shopper, just running errands like everyone else. But I'm not like everyone else. I hadn't been out of the house for awhile. I tend to be somewhat self-conscious of my appearance. If I forget my ear plugs, just the ordinary noise level will trigger me. I managed to get back home, safe and somewhat sound. Yet, once again, I felt like the little kid outside the window, looking in. Never fitting in. But it's ok. I can live with sensory overload. Next time, I'll remember to wear ear plugs!

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@cathigriffioen

I am 100% sure my husband is on the spectrum but he refuses to be tested. Believing he is on the spectrum is the only way I have been able to live with him. He is a good man and provider but his behaviors are classic as you’ve described. There is a book for spouses called Alone Together which is exactly how I feel.

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You are correct, all of us "copy" behaviors we see around us. We all have cultural norms and standards, which vary somewhat from place to place. It really fascinates me. I love studying about how people live all over the world.

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Hello @mamasitalucita

I just read the above post about your shopping trip which ended uncomfortably. I so admire how you were able to take this uncomfortable situation, remove yourself and then look at it again with new eyes and not be devastated by it! I wish you could teach all of us "neurotypicals" how to do that. What I really appreciate is the fact that you don't take this one experience and decide never to go out again, but instead you think that "Next time, I'll remember to wear ear plugs!"

Your attitude really is inspirational. If you ever decide to write a daily inspirational book about your experiences, I would love to read it. But for now, I'll just be content to read your posts.

Teresa

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@hopeful33250

@mamasitalucita

I appreciate your starting this discussion of the Spectrum. This could be very enlightening for many of our adults who have problems that seem to be beyond treatment.

Could you share a bit more about how the Spectrum diagnosis came about? Was it a professional who diagnosed you? If so, what in particular led to this diagnosis?

Once again, when sharing personal experiences on this online community, please feel free to share only as you are comfortable doing so.

Teresa

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One other reason that led me to think I might be on the Spectrum was the unusual way that I was able to connect with and understand a young child that I worked with years ago. Back then we really didn't know all that much about the Autism Spectrum, or what kind of specifics to use in helping young children. The Team tried everything we could think of, and kept records of what worked and what didn't. I also kept a daily journal, which was supervised by the school system psychologist. She and I worked very closely together. I did everything she asked me to and took every training she wanted me to, I read every book I could get my hands on, and slowly it dawned on me that One: I was most likely somewhere on the Spectrum and Two: I had an Empathic streak a mile wide. Many people on the Spectrum do not believe in a Power greater than themselves. They are fine, loving, kind people, but not necessarily religious. Some are Spiritual, Seekers, on a journey to find peace and the ultimate Truth. I am somewhere in the mix, and have learned that God shows up in the most difficult of circumstances. This child's Team had a handful of seekers from all different paths, united to help her live a happier, healthier life. We always laughed and said that when they make a movie about their journey, I wanted Michelle Pfieffer to play me! Now, I think Kathy Bates would be more accurate as to both my personality and appearance. I get asked if I know who I look like all the time. And my personality is very much like her as well. Who knows, maybe that movie will get made after all! Anyway, take good care of yourselves. If you feel you might be on the Spectrum, it is not the end of the world. You have options. There are many free tests you can take to help you get insight. After I bombed three major tests it was finally a relief. A blessing.

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@hopeful33250

Hello @mamasitalucita

I just read the above post about your shopping trip which ended uncomfortably. I so admire how you were able to take this uncomfortable situation, remove yourself and then look at it again with new eyes and not be devastated by it! I wish you could teach all of us "neurotypicals" how to do that. What I really appreciate is the fact that you don't take this one experience and decide never to go out again, but instead you think that "Next time, I'll remember to wear ear plugs!"

Your attitude really is inspirational. If you ever decide to write a daily inspirational book about your experiences, I would love to read it. But for now, I'll just be content to read your posts.

Teresa

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For @hopeful33250, and anyone else who read my story of going to Academy Sports and getting totally overwhelmed with the noise and sights. I grabbed the buggy today, cleaned off the handle bar and the doors whooshed open! Immediately the loud music began screaming in my supersonic ears. I thought " You have your ear buds, you can use them!!!" Then immediately I decided " No, I got this." I took my buggy and headed off to look for a patio umbrella and a small /medium pool. I went down all the aisles, and found exactly what I needed , on sale. Meanwhile, Bubba and Gramps were on the other side of the store, getting Bubba's new bike. I even had a good conversation with an employee. We talked a good long time, and hopefully I laid some groundwork for some other person to come along and give her some more encouragement. And to think I almost didn't even go into the store after my last misadventure there. It felt good to be out where other families were shopping for the summer, planning on enjoying their days together. Buying things that will help them enjoy their backyards and each other. You are inspirational. You take your time to be available to people all across the world, who need a place to feel safe. A place to ask questions. I just hope more people find the blessing I have found here.

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While we were on vacation recently, my youngest daughter and I watched a documentary called the Magic Pill. It features a lovely little girl who is on the Autism Spectrum and also has seizures. While I am in no way at all a nutritional advisor or medical professional, I have to say that I do heartily recommend the dietary changes this film recommends. I personally have seen the benefits in my own life. I have had chronic pain and depression, Fibromyalgia, Degenerative Disc Disease, Spinal Stenosis, to mention a few. At the age of sixty-six, I am in better shape than I have been most of my life. Changes in diet should always be discussed with one's PCP. My family physician is all on board with my decision to stay as low carb as possible. I also have Type Two Diabetes, and this way of eating has helped me weigh the lowest I have weighed since my thirty-two year old was born. The Father in the film has a blog, and I think you can also find him on Facebook. If you or someone you know has problems with sensory overload, meltdowns, communication issues or any other health related issues common to those on the Spectrum, take a look at this documentary. Remember, always continue any medications until your Physician says it's time to back off a bit. Do not self medicate or make drastic changes until you have studied it like your life depends on it. Because it does. Peace and love, MamacitaLucita.

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Are our comments here visible outside of connect.mayoclinic.org?
In other words, if someone does a Yahoo, Webcrawler, or Google search, will our comments show up?

Thank you.

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I have noticed that Asperger's, which I have, is something that doctors do not like to talk about. 🙂 I don't know what it feels like to JUST have Asperger's, but I have read that it makes the individual more likely to have other mental illnesses also, and I have them! That's me! Unfortunately! LOL.

Asperger's, along with the other mental illnesses I have, is something that I wouldn't wish on ANY human being. I'll go more in to detail later.

By the way, how come there is not a live chat room here for Mayo patients? It needs to happen!

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Good questions, @usernameca
Mayo Clinic Connect is a public website. It is discoverable on internet search engines. We made it publicly available for all to help as many people as possible. Because it is a public site, we allow people to register without using their real name if they choose, such as you have. Choosing a picture or using a real name is optional. There is also a private messaging function should members wish to share privately.

You can read more about why and how we moderate Connect (https://connect.mayoclinic.org/page/about-connect/tab/moderators/) and the Community Guidelines that help keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/).

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@mamacita

While we were on vacation recently, my youngest daughter and I watched a documentary called the Magic Pill. It features a lovely little girl who is on the Autism Spectrum and also has seizures. While I am in no way at all a nutritional advisor or medical professional, I have to say that I do heartily recommend the dietary changes this film recommends. I personally have seen the benefits in my own life. I have had chronic pain and depression, Fibromyalgia, Degenerative Disc Disease, Spinal Stenosis, to mention a few. At the age of sixty-six, I am in better shape than I have been most of my life. Changes in diet should always be discussed with one's PCP. My family physician is all on board with my decision to stay as low carb as possible. I also have Type Two Diabetes, and this way of eating has helped me weigh the lowest I have weighed since my thirty-two year old was born. The Father in the film has a blog, and I think you can also find him on Facebook. If you or someone you know has problems with sensory overload, meltdowns, communication issues or any other health related issues common to those on the Spectrum, take a look at this documentary. Remember, always continue any medications until your Physician says it's time to back off a bit. Do not self medicate or make drastic changes until you have studied it like your life depends on it. Because it does. Peace and love, MamacitaLucita.

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@mamasitalucita
Such good advice! I am glad that you brought up the healthy eating topic. We can't talk too much about the importance of eating right. I have recently cut down carbs to a bare minimum and feel so, so, so much better. I am borderline diabetic (A1C of only 6) but high carb foods were really doing a number on me and I would feel terrible. While I miss the taste, I'm glad not to have the highs and lows of fatigue and sleepiness that go with too many carbs! Teresa

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@usernameca

I have noticed that Asperger's, which I have, is something that doctors do not like to talk about. 🙂 I don't know what it feels like to JUST have Asperger's, but I have read that it makes the individual more likely to have other mental illnesses also, and I have them! That's me! Unfortunately! LOL.

Asperger's, along with the other mental illnesses I have, is something that I wouldn't wish on ANY human being. I'll go more in to detail later.

By the way, how come there is not a live chat room here for Mayo patients? It needs to happen!

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Even my precious, kind, intelligent doctor kind of shuffles his feet and stares at the floor. I'm not sure how much he understands about the characteristics of persons on the Autism Spectrum. But he listens to me, and tries his best to help me. By the way, I am not just an Aspie, either. The very fact that we are on the Spectrum hints to me that there are sensitivities and exceptionalities intertwined within our Superpower!!! Thank you for sharing, @usernameca. I would love for you to elaborate on that.

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@usernameca

I have noticed that Asperger's, which I have, is something that doctors do not like to talk about. 🙂 I don't know what it feels like to JUST have Asperger's, but I have read that it makes the individual more likely to have other mental illnesses also, and I have them! That's me! Unfortunately! LOL.

Asperger's, along with the other mental illnesses I have, is something that I wouldn't wish on ANY human being. I'll go more in to detail later.

By the way, how come there is not a live chat room here for Mayo patients? It needs to happen!

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Doctors don't really like discussing weight loss with their overweight patients. They don't like having to deal with depression in clients who never completely get well. Many dislike having to listen to patients with panic attacks and anxiety in social situations. But here we are. Our conditions are just as real as diabetes and high blood pressure. One day I hope there will no longer be a stigma regarding mental illnesses. No one wakes up one morning and decides to attach to a laundry list of painful symptoms. I went through many different diagnoses before I got the right one. Aspergers. Which went right along with ADHD, Anxiety, and Depression. With this understanding, everything began to make sense.

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@colleenyoung

Good questions, @usernameca
Mayo Clinic Connect is a public website. It is discoverable on internet search engines. We made it publicly available for all to help as many people as possible. Because it is a public site, we allow people to register without using their real name if they choose, such as you have. Choosing a picture or using a real name is optional. There is also a private messaging function should members wish to share privately.

You can read more about why and how we moderate Connect (https://connect.mayoclinic.org/page/about-connect/tab/moderators/) and the Community Guidelines that help keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/).

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When I write on here I have a tendency to "change the names to protect the innocent." I think that came from an old TV show… Anyway, I change things around so that most people are not aware of any particular person I am talking about. The information I share here is common knowledge to the people I talk to on social media. What I talk about is meant to help, not harm. I try very hard to be respectful and not share anyone else's story. That is their story to tell. I am here to encourage and lift up. I feel that you can say what you want to here at Mayo Clinic Connect and feel safe doing so.

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Forgive me for not getting back on here for awhile. I have had an under the weather husband and the situation with the Immigrant Children has me totally floored. Friends on social media have basically gone behind my back to imply that my thoughts are irrational, stupid, and that I just need to shut up. It hurts my soul on so many levels. But at least steps were taken today that hopefully will lessen the suffering of these children. Autistics do feel. We do care. I am not a political person at all. I'm just a person. Hope that more people on the Spectrum will respond. We need to talk.

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