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

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.

Jump to this post

Thank you. Will do!

REPLY
@kimmym

Thank you for this discussion. I am new to this community and hope I am directing my comments correctly by replying to your post. How do I comment on other members comments to your initial post? I'll get the hang of this shortly. I appreciate a community where it is easy to ask question, learn from others and hear the latest info out there and what people have done to learn more and do more while living on the spectrum. Thank you.

Jump to this post

Thank you for all of the helpful advice!

REPLY
@mamacita

Dear @kimmym, thank you for taking the time out of your day to come here and check us out. We are a new group, relatively spesking. We are getting used to each other and trying to get comfortable. We all have usernames. But since I became a volunteer mentor, everyone knows my full name. And that's fine. I try to not put anything on here that I wouldn't mind being printed on the front page of the New York Times. We look forward to seeing you again here, and hope that you will contribute as you feel led to do so. Everyone has a story, and we want to hear it. We are here for you! Love and light,
Mamacita

Jump to this post

Thank you for your warm and kind welcome!

REPLY

If there was a " cure" for Autism, what would you do? Would you research it first? Would you not check into it at all? Or would you study the research, knowing that there are so many people on the Spectrum who have not had the compassion, the encouragement, or maybe the training you have had? What about the late diagnosed children who cannot speak but a few words? But they can type a novel on a keyboard. What about them? What about us? What would you change if you could?

REPLY
@kimmym

Thank you for this discussion. I am new to this community and hope I am directing my comments correctly by replying to your post. How do I comment on other members comments to your initial post? I'll get the hang of this shortly. I appreciate a community where it is easy to ask question, learn from others and hear the latest info out there and what people have done to learn more and do more while living on the spectrum. Thank you.

Jump to this post

I'll just add @kimmym that whether you @mention another member's name or not, your message can be seen by all members taking part in this discussion and people reading and considering to become members. It's a group discussion. Make sense?

REPLY

And what about all those co-existing conditions that we on the Spectrum deal with every day? When people get to know you, does it become all too apparent that we must be from another planet?!! Relax, dear friend on the Spectrum. We got this. Trust me, Neurotypicals have their own set of problems. I wouldnt trade my problems for anyone else's. There is so much information out there on how to cope, how to change things we aren't comfortable with. We don't haTgeresve to wait until the perfect Psychiatrist comes along to get started. Read Samantha Crafts' blog or her book Everyday Aspergers. Check out books by Judy Endow and Jeannette Purkis Au. There's power in the word! We can do this! We are better together.

REPLY
@mamacita

If there was a " cure" for Autism, what would you do? Would you research it first? Would you not check into it at all? Or would you study the research, knowing that there are so many people on the Spectrum who have not had the compassion, the encouragement, or maybe the training you have had? What about the late diagnosed children who cannot speak but a few words? But they can type a novel on a keyboard. What about them? What about us? What would you change if you could?

Jump to this post

unfortunately there isn't a cure to physiologically change the brain and the biochemistry and neural electrical activity and the comorbidities attached to the changes the brain and the hyper connectivity of the neural synapses

REPLY
@mamacita

I think that one of the most challenging aspects that I find as an Adult on the Autism Spectrum, is the ability to balance all my responsibilities at the same time that I carve out time for the creative, joyous part of me. I was so neglectful of myself for so many years, it is actually like waking up and consciously deciding who I want to be that day. Does that make any sense? There are so many demands on my time, your time, everyone's time. But we have to breathe. We have to relax, and enjoy taking our time with the beauty that is all around us. I feel as though I have been given a second chance at life. I try to stay in touch with what is going on around me. But I deliberately schedule time for me to do "Autism things" every day. To study about what makes people tick. To look at past mistakes and move on, realizing that they were lessons learned. To be patient and kind with myself helps me to be more patient and kind with others. I was not raised to be a planner. I was not raised to be organized. But for me, learning daily how to be more structured, and to plan the things that matter to me, helps me to weather the stress of living in a world that is too loud, too busy, and extremely anxiety-provoking. I am a concrete thinker. Whatever you tell me, I will believe, unless it is proven otherwise. I don't get jokes, cannot tell a joke, although people do say I have a good sense of humor. I am a Mac in a PC world. I think differently than most people, outside of the box. I don't fit in. But I do come in handy. And learning to live in the moment, to be mindful, to have balance, is a noble task. To sum it all up: Make every day count! That is my challenge!

Jump to this post

living as an Autistic in an able bodied world and for no sympathy nor empathy in the work environs and to know that one will be demeaned ,mocked, denigrated and abused

REPLY

@sirgalahad. I don't want to be "cured." I would much rather simmer over an open fire!

REPLY

Thank you for the clarification. It does make sense now.

REPLY

@azrebecca66, thanks for liking the post on Adults On The Autism Spectrum! We are trying to create a gathering of sorts here for those of us who feel, believe, or identify with the multitude of characteristics that are Autism Spectrum in nature. Sometimes it is not financially feasible to seek a Psychiatric determination of Autism, in the case of adults. Many feel that the wide array of tests that are available are sufficient to determine one's place on the Spectrum. Unless a professional diagnosis is required for accommodations in university classes, or support services/training, many do not seek it. Education and research are coming up with new information every day. We desire to make this a safe place to share one's story, to ask questions, and to be supported. We are not less than. We think differently, because we are " wired" differently. I hope to hear from you again in the future. We want to learn from you and hear your story, as much as you are comfortable sharing it.

REPLY
@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

Jump to this post

@sirgalahad, I feel really Autistic and down in the dumps today. I had my foot surgery, and all went very well. I am not even in pain. But my heart is heavy. I have a Neurotypical friend that I finally told her frankly how I felt about an issue. I hurt her feelings, and she told me so. I had been telling her in many different ways for almost two years why I felt the way I did. She still doesn't seem to understand where I am coming from. She seems to have gone on a whole different path than I have. I will always appreciate the good times we shared, but the issue is a deal breaker for me. With this being a public forum,( Even with assumed names) I dare not delve any further. Suffice it to say, I am kicking myself in the behind for not being bolder, sooner. I just am not the judgy type, cos I certainly know how it feels to be judged. I don't have tons of really close friends and I hate to lose one that meant so much to me. Some things we have no control over. I really think I lost her a couple of years ago. Thanks for listening. I am loyal to a fault.

REPLY
@mamacita

If there was a " cure" for Autism, what would you do? Would you research it first? Would you not check into it at all? Or would you study the research, knowing that there are so many people on the Spectrum who have not had the compassion, the encouragement, or maybe the training you have had? What about the late diagnosed children who cannot speak but a few words? But they can type a novel on a keyboard. What about them? What about us? What would you change if you could?

Jump to this post

@sirgalahad , I am so thankful that we have this understanding, you and I, about the actual wiring of our Autie brains. I also have ADHD, and as I told a perfect stranger yesterday, I like my brain just the way it is. I know I ramble on and on sometimes when I am speaking about my obsessions. I can tell that I am beginning to bore people when they get this little glazed look in their eyes. At least now I have these wonderful cards I can give out to people that tell about the work being done with Mayo Clinic Connect. They are great ice breakers or conversation finishers. I even gave out cards while I was having foot surgery yesterday. I am trying to make the Neurotypical world a better place for my Aspie precious little Grandson. He has a brilliant brain beneath the guise of the little professor who can recite with perfect accuracy the script of every children's show he has ever seen. Just imagine how great he would be in memorizing scripts for a play! There are positives to every negative anyone can throw at us. Hope you are having a wonderful day down under there in Australia. Say! I have an idea. If anyone out there reading this would like to post the general area of where they are from, that would be great! Southern USA, here!

REPLY
@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

Jump to this post

Hello @mamacita

I am sorry that you are grieving the loss of a long time friend. However, some relationships are just for a season. I'm glad that you can enjoy the memories that were good.

Now, that you have been honest with your friend, you can move forward. I'm sure there are lots of folks who would love to have a friend like you. If I lived closer, I'd certainly call you.

Teresa

REPLY
@mamacita

I think that one of the most challenging aspects that I find as an Adult on the Autism Spectrum, is the ability to balance all my responsibilities at the same time that I carve out time for the creative, joyous part of me. I was so neglectful of myself for so many years, it is actually like waking up and consciously deciding who I want to be that day. Does that make any sense? There are so many demands on my time, your time, everyone's time. But we have to breathe. We have to relax, and enjoy taking our time with the beauty that is all around us. I feel as though I have been given a second chance at life. I try to stay in touch with what is going on around me. But I deliberately schedule time for me to do "Autism things" every day. To study about what makes people tick. To look at past mistakes and move on, realizing that they were lessons learned. To be patient and kind with myself helps me to be more patient and kind with others. I was not raised to be a planner. I was not raised to be organized. But for me, learning daily how to be more structured, and to plan the things that matter to me, helps me to weather the stress of living in a world that is too loud, too busy, and extremely anxiety-provoking. I am a concrete thinker. Whatever you tell me, I will believe, unless it is proven otherwise. I don't get jokes, cannot tell a joke, although people do say I have a good sense of humor. I am a Mac in a PC world. I think differently than most people, outside of the box. I don't fit in. But I do come in handy. And learning to live in the moment, to be mindful, to have balance, is a noble task. To sum it all up: Make every day count! That is my challenge!

Jump to this post

@sirgalahad , I have been told I was stupid. That I should shut up. That I should keep my mouth shut. That I was too nervous to do the job. ( This after I reported a facility to the State Welfare Department for child abuse.) You would be nervous too if you saw continual neglect of small children, and you wanted the place to wake up and do what's right. They never did. The state didn't do anything. I left. My friend who worked there left. Autistic people feel very derply. We do care about others. We care about animals on a deeper level, I think, than perhaps Neurotypicals do. Animals are lovers of their human friends no matter what color you are, how you vote, or where you live. Animals are good people. Anymore animal lovers out there?

REPLY
Please login or register to post a reply.