Living on the Autism Spectrum
Living on the Autism Spectrum is part of Living with ADD-ADHD-Dyslexia as well. To us, it seems that the industry of psychologists, psychiatrists and behavior specialists have not yet made that connection. But I know the connection: I have my family as examples along with those within my extended family on both my mother’s and father’s side. These learning differences are still so fuzzy to most scientists and behaviorists that they cannot see they are not definitive, cannot be put into categories and labeled. Dr. Daniel Amen is the only specialist I have researched who says each learning difference is unique to the person, therefore the remedy is unique as well.
The Autism Spectrum
Well, what exactly does that mean? It is as I said above, all people with learning differences, now also including the Netflix’s “Atypical.” Someone can also be labeled on the Autism Spectrum together with the term Savant, meaning they are classified as a geniuses, often in music or math (See Dustin Hoffman’s portrayal in “Rain-man,” or in ABC’s “The Good Doctor”). In between these extreme cases, many students are labeled being on the even though most people are not aware.are unique and as widely different as a child that does not speak to a high functioning person on the Spectrum, like the character being portrayed on
While volunteering as a writing coach in my son’s third grade class I partnered with students who were struggling with composition and sentence structure. I asked to work with a student who was also a neighbor. I had known this young man since he was five because he was the same age as my son. But the teacher said, “Oh, no. You cannot work with him. He has Autism.” I was totally dumbfounded; I thought she had to be mistaken. Back then (eighteen years ago) a child was labeled Autistic when they did not speak, not due to any physical reason. Clearly this teacher had more training on the subject than me. I was certainly uninformed at that time.
R.K. was tall for his age, had a pleasant personality and spoke softly except when on a subject he loved: sports, cars, etc. Then his speech would pick up speed, sentences became dis-jointed and making little sense, all while speaking with some authority on the subject. He sounded like knew what he was talking about, but not really. Another young man, just six years younger than me and the little brother of my best friend is the same. I’ve known that entire family my whole life; we are actually second cousins.
Brian has always been soft-spoken, shy, speaking few words, very similar to R.K. Brian, however, also has the persona of someone who is keeping a secret – kind of like the cat who swallowed a canary expression. He, too, like R.K. would become animated when a subject he liked came up: cars, sports, etc. He also spoke with such authority he convinces us he knows what he is talking about. Sadly, both young men just parrot what they see on T.V. or the movies, never something they may have read because they did no reading.
Somehow each of these young men was able to graduate high school, pass driver’s training, and get a license. Both, however, became destined to a lifetime of washing dishes.
R.K. and Brian would benefit from job opportunities that use their hands, and offer a flexible environment: horticulture, landscaping or farming. There have been many successful training programs for people on the Spectrum that have amazing success. But neither of these young men ever got the opportunity because their families never got them tested and diagnosed.
Families are the number one reason so many of our Autistic adults are struggling to find a place in this economy. Sadly, R.K.’s grandmother, a retired primary school teacher, made the decision to take R.K. into her own home to supplement his classroom training. This was also the time when parents with “slow” students fought for their children to stay with other students instead of in a special education class. Those classes were for the more extreme cases: “not for my child.” That was the story for my friend’s brother his whole life, living with his 94-year-old mother who is afraid to die because she fears what will happen to him.
Throughout his lifetime, Brian’s mother has had such fears for him she did not let him have any vocational training, always determining that the counselors and teachers did not understand him. And, of course, being on thehe knew enough to get out of assignments by refusing to try anything too different. Washing dishes was comfortable since he has done that since age 15! He takes such pride in his washing abilities that he damages the skin on his hands from the over-use of bleach. In his mind that is a good thing, and no explanation from anyone can diminish his confidence that he knows what he is doing.
Asperger’s is a more familiar term from the Autism Spectrum. Individuals diagnosed with Asperger’s are also considered highly functional.
My nephew was diagnosed at age 8, after his mother (my sister) unsuccessfully declared that all his teachers were doing an inadequate job of teaching him. I do not remember which teacher finally stood up to her and helped get him diagnosed. She deserved credit for saving his life from becoming the same as R.K. and Brian, because Asperger’s would be the most correct diagnosis for both of them as well.
Thankfully, my sister was financially able to get Todd a skilled tutor who came to the home each day after his regular school day. She also got medical evaluations and prescriptions that helped Todd focus, although they played havoc with his appetite, energy level and caused weight loss. The tutor helped with school. Other professionals suggested activities that would help Todd with his social skills. Those social skills are what the professionals most focus on for Asperger’s learners: their inability to recognize and emulate proper social interactions with other people and animals, often resulting in inappropriate behavior, talk, mannerisms — sometimes becoming harmful to themselves or others.
Some activities suggested by professionals for people with Asperger’s are participation in the theater, ballroom or other partner dancing, clown or mime training. Being part of a junior orchestra has been a huge success for Todd: he loves the kettle drum, and positively thrived while training for a performance at Carnegie Hall a few years ago. Both acting and dancing has also helped with his social behavior, especially acting where he learned to recognize how others react to spoken words and facial expressions. Todd also excels at volunteering with others his age while repairing storm damaged homes. The dancing, volunteering and orchestra all give him experiences that reinforce teamwork and responsibility. Unfortunately, neither R.K. nor Brian receive any of the benefits Todd has.
R.K. and Brian are doomed to lives of dish-washing and living with family because they have never been given the chance to try more. Withholding training and support for children with learning differences places them in a perpetual state of poverty and permanently on government support all because they were afraid to push beyond their comfort zone. In Brian’s case, now in his 50’s, dish washing jobs put gas in his car, but not a roof over his head. Thankfully he will be able to stay in the home his mother owns but will not know how to maintain it, repair it, or respond to an emergency.
Todd, however, now 24, lives with his mother, but also has a job with his father’s science lab. He is able to commute into New York City for courses and musical opportunities by himself. Although he also may not be able to live on his own, he could benefit from being in a group or shared home with people who understand someone on the Autism Spectrum. And, although never specifically addressed, that is the backdrop for the highly popular T.V. show, “The Big Bang Theory.” The show suggests that several of the actors are on the Savant Spectrum along with their Asperger’s by showing their little idiosyncrasies as comedy the public generally accepts.
I also have another family member on the Spectrum, a cousin on my mother’s side who still, to this day, remains un-diagnosed. Able to complete college and teach for a few years, he suddenly could no longer cope. He divorced his wife and abruptly removed himself from family and regular employment. He now lives a reclusive life, writing, drawing and doing part-time jobs with different area parks and services. His family never sought a diagnosis or support for him; he was “just being Mickey.” We are close in age, and I, too, recently decided to live a life very differently than before.
I have led a life of service in education, hospitality and retail that has left me totally spent. With the added stress of watching both parents pass from long-term illness three decades apart, I no longer feel I can cope. I have sold my car, no longer have a phone, and communicate only by text and e-mail: I can no longer bear to hold a conversation over the phone — it is just too emotional for me. I am using this Blog and other written opportunities to finally release the creativity I have been suppressing all these years. Living with ADD-ADHD-Dyslexia and Asperger’s is overwhelming. It is exhausting trying to handle daily stress along with today’s unbelievable current events. I feel like I am living in a parallel universe where everyone is speaking another language as they see what I see, hear what I hear, but we agree on nothing!
With this Blog I have gone into a lot of detail about the young men I know because an Autism diagnosis is also part of Living with ADD-ADHD-Dyslectic learning differences. Our mental wiring causes us to learn and behave differently:
–We organize our room, possessions, work areas specifically for our purposes and can instantly tell when something is moved. (This is a great security benefit!)
–We are easily confused, over-whelmed, intimidated, and bullied into a state of depression, anxiety, and feelings of failure.
–We suffer from food issues beyond Bulimia and Anorexia, often binge eating, causing metabolism swings which throw off our ability to sleep and digest food properly, leading to chronic diseases and other complications.
–We do not like to be touched or hugged without being asked.
–Labels in our clothes have to be removed.
–We cannot stand the feeling of certain fabrics, some causing us great stress, especially in pajamas, sheets, blankets and more.
–We react to harsh lighting and loud sounds (or arguing) and will often leave if unbearable.
–We jump if someone, even a family member living with us, comes up behind us and speaks or touches us.
My concern is this may be an American problem. In all my decades of research I can find no reference to so many learning disorders in other countries, even third world countries within Africa, Asia or remote islands. Could it be that the abundance of learning differences are only here in America? Is it possible that the processed packaged foods, animals raised in an abnormal circumstances, fruits and vegetables grown in artificially altered soil to grow super crops are all causing these learning differences? Now consider the additives in our foods, flavors and coloring added to medicines along with the chemical ingredients. Are we slowly allowing the continuous poisoning of our bodies? And does this all begin with the artificial formulas we feed babies? Chemicals are in everything we wear, all furniture, cleansers and more – we never take one breath without inhaling something poisonous. We ignore and accept these toxins as everyday part of life.
So, challenge me, prove me wrong. Can our learning differences be traced back to when all this industrial manipulation began (maybe after World War II)? Let’s put feet to fire and find out why Living with ADD-ADHD-Dyslexia, along with the Autism Spectrum, have become so main stream the television industry is creating shows about people living with learning differences.
“It is very often the most gifted, dedicated, and creative members of our society who become victims of human rights abuses.”
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