Adults On The Autism Spectrum
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!
Interested in more discussions like this? Go to the Autism (ASD) Support Group.
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.
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.
Hi, @mamasitalucita — this is an important discussion about not only the childhood of a patient diagnosed as being on the autism spectrum, but then living life as an adult with this diagnosis.
I'm tagging here some other Connect members who have talked about their own diagnoses or those of a loved one. I'm hoping they may have some thoughts about what you experienced as a child and also now, as an adult who is a wife, mother, homeschooling parent and caregiver for others in the family with their health challenges. @lrymer @rachelfromnl @ginpene05 @guguliz33 @xottawan @mininettie @dawnpereda @neenee @woogie @muppey @techi @mrmaid11 @johnlionheart @melissa333.
@mamacitalucita — what do you find most challenging about living with your diagnosis now in your life as an adult?
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!
@mamasitalucita, you have such a positive message and outlook. Thank you for starting this important discussion. I was clueless about Autism until my wife's niece had a son that was diagnosed with Autism when he was a small child. He's in his 30s now and a delight to be around. It's fun to just sit around and have a discussion on things that he likes. He is a blessing to his mother and father. Over the years I have learned a lot from him. Like you mentioned about memory, his memory is amazing. He loves trains and has done so much reading on them and visiting different museums around the country that he knows engine numbers by heart and can tell you when they were made and all of the nitty gritty details. He is like you say, a Mac in a PC world…and I love Macs!
Blessings on your day!
John, thank you for your kind words. I am so happy and excited to be a small part of this fantastic community of Neurotypicals and those on the Spectrum. I personally have found gratitude goes a long way in dealing with the perplexities life tends to throw at us all. Somewhere along the line I was taught that if I would take good care of the things I'd been given, eventually I would be given more. This includes relationships, family, friends, and not just material things. People first, always. Blessings, MamacitaLucita.
@mamasitalucita Hello MamacitaLucita
I would like to read some of the books you mentioned in your post. The one thought that I found most intriguing about your post was "thinking in pictures." Can you explain what that is all about?
I will give it my best shot. Thinking in pictures. When someone is engaging me in conversation, every word that is said appears as a specific picture in my brain. For example, if you tell me that you will bring me a rose cutting from your garden, in my mind I will see a red rose from my Father's garden. It is almost like an immediate translation to another language. When tommorow comes, and your roses are a different color of red than I had anticipated, my mind will add that memory to my collection of pictures. There's more, but try this on for starters. This is one reason many Autists are such concrete thinkers. Thank you for your interest. I hope I have helped a little bit.
Thank you for the description of thinking in pictures. Your explanation does help somewhat. I have ordered the book, "Thinking in Pictures" so perhaps I'll get a better idea after reading that.
Your mind must be filled like a picture album – would that be a good description or not? Do the pictures disappear after one experience and then get replaced with new picture from current experiences? I hope that I'm not boring you with trying to get a handle on this.
You are not boring me at all! Here's the thing about thinking in pictures. Frequently, with those on the Autism Spectrum, a photographic memory accompanies the thinking in pictures. And with that, therein lies the potential for "looping." Re-runs, basically, of the same scenes, over and over. I have had to make a conscious decision over the years to drive my car a different way to work, or to deliberately go around a certain place where a tragedy happened. Because my brain does not forget. Ever. Things that were too traumatic to bear, I somehow managed to put on the back burner, so to speak. " I'll think about it later." If something is not important to me, not one of my "obsessions" well, I just won't remember that. And here's another thing….I have a thousand and one interests. Because I can visualize something in great detail, I have always been able to practice my music without using an instrument. ( Piano, organ, autoharp.) My brain remembers the intricate details and so I am never inconvenienced by lack of a piano. Have you ever seen the pictures sketched by the young man who drew a huge cityscape from memory? Amazing! I'm nowhere near that good! Ha! But I do enjoy playing the piano for people to sing. And it comes in handy to be able to follow along with a song I have never heard before. Have a blessed day, my friend.