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!

@hopeful33250

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

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hopeful33250, your name on here gives me hope. It reflects your personality. After a particularly distressing event, I slept from six pm until eight thirty pm. I was so overwhelmed with sensory involvement, if I had a tunnel to China I would have gladly taken it. But only if it was guaranteed to land me in a quiet rice paddy. Autism is complex. It is all of the things I mentioned, yet it is none of these. Each description could pretty well describe an issue that could stand on its owm. Self harm? I doubt the readers want me to go there. Labeled an Aspie does not mean that those with Aspergers are unfamiliar with clawing one's skin in a meltdown, or banging a cabinet door with one's head. Pretty serious, huh? That's why ADHD didn't cut it. Anxiety doesn't completely define it. And no medication alone will "cure" it. Please, you have my permission to edit whatever you feel is appropriate. I am being as transparent as I can be. It is not always fun and games when dealing with the Spectrum. That's why these discussions need to be held. I am not throwing a pity party, because I have learned that no one will come! You just get up and get started. A new day as arrived. Let's make tge best of it, Typical and Atypical alike.
Peace.
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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I look forward to reading this information and discussing it further with you. Peace,
Mamacita

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.

@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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Thank you for sharing the scientific background of Autism Spectrum disorders. I want to learn all that I can.

@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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Do you have a link to that research? Fascinating information! Lifelong learner on Autism Sectrum. Thank you.

@mamacita

I have just caught up with all your posts on this thread. Thank you so much for the wonderful comments you made about me. You make me sound more wonderful than I really am. I like me, even love me, but I see myself through different eyes. Long ago I learned that how others view me when I've received feedback is very enlightening. Even though I have great confidence, there is still a scared little girl inside me afraid that I'm not good enough. Keeping that little girl feeling loved takes a lot of work. I use up many spoons on some days. My husband uses up his spoons doing that as well. Fortunately he loves me as I am, and as I'm not.

You are such a special person Mamacita. You are open and wise and able to express who you are eloquently. You and I would be great friends if we were close in geography. We are virtual friends on this connection, as I am with others on here. I hope to meet you one day.

Gail
Volunteer Mentor

@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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Do you have a link to that research from Boston.? I'd love to read it too.

@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.

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Hi @kimmym. Your post above is not directed to a specific member but if you click the Reply button under another post to type in a comment, that person and anyone following the discussion will get an email notification of your post. If you want to direct your post to a particular member just type in their member name with the @ sign. Like I did to reply to your post and I typed "Hi @kimmym…"

Anytime you would like to know how to do something in Connect, there is a really good Getting Started Guide that you can access by going to the bottom of any windows and clicking on the link Get Started on Connect. Here is where the link will take you:

https://connect.mayoclinic.org/get-started-on-connect/

Hope this helps.
John

@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.

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Dear @kimmym, I am so glad you have joined us here! I am hoping that as time goes by I will be able to actually share news and breakthroughs in the field of Autism.I have been gingerly making my way, attempting to get the word out. Trying to engage people in conversation. We hope this conversation will lead to a gathering of friends who are on the same path. Education, support, comfort, and hope. Understanding. Love and light,
Mamacita

@gailb

@mamacita

I have just caught up with all your posts on this thread. Thank you so much for the wonderful comments you made about me. You make me sound more wonderful than I really am. I like me, even love me, but I see myself through different eyes. Long ago I learned that how others view me when I've received feedback is very enlightening. Even though I have great confidence, there is still a scared little girl inside me afraid that I'm not good enough. Keeping that little girl feeling loved takes a lot of work. I use up many spoons on some days. My husband uses up his spoons doing that as well. Fortunately he loves me as I am, and as I'm not.

You are such a special person Mamacita. You are open and wise and able to express who you are eloquently. You and I would be great friends if we were close in geography. We are virtual friends on this connection, as I am with others on here. I hope to meet you one day.

Gail
Volunteer Mentor

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@gailb , we will meet! I understand that volunteer mentors meet with our Director, once per year. I plan to be there! You have been such a great help to me as I try to figure out what I'm supposed to do here. I feel that I probably should talk less, and listen more. Love you all,
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

@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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@sirgalahad, you do just fine. It blows me away how powerful your words are. I understand how it takes longer to get things done. I have an issue with my eyes that causes me all kinds of trouble. It takes me five times as long to write a paper because of this. There are things on the computer that will take me a fortnight to complete. Yet I can hear things others cant, find things others find impossible to do, I have a lot of patience, people tell me. So there are more things in this world than doing. Just being is my goal.You have that refined to an art form. I am so very grateful to know you and have you here on these pages. Blessings,
Mamacita

@mamacita I like that you have distinguished between "being versus doing." Sometimes we can become so consumed with doing that we forget to be ourselves. Teresa

@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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shalom mum

@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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either look in the Frontiers In Cellular Neuroscience and or the scientific medical research paper title is Fundamental Elements in Autism, From Neurogenesis and Neurite Growth to Synaptic Plasticity authors James gilbert and Heng-Ye Man from Boston university from the depts. of Biology and dept of Pharmacology& Experimental Therapeutics . quite an interesting paper ittook me 3 days to read it andi understood 70 %

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