When in Rome, When in Autie Land

I love Tony Attwood.

This is not Tony Attwood. It is Don Adams of the 1960's TV show, Get Smart, and he comes into this story. Later. (The Blogging Editor doesn't let me place photographs where I want them.)

But back to Tony Attwood.

I have not always loved him. I thought perhaps he was a bit arrogant a bit presumptuous. But I know him better now. I have read his latest book The Complete Guide To Asperger's Syndrome and I have also had the honor of attending his conference in Boston this past September. Carol Gray was his co-presenter and the Autism Association of New England sponsored the conference, for which there were almost 1,000 attendees.

But I still have difficulty with some psychological presumptions. But to be fair, perhaps that is because Auties and Aspies are each different with a different constellation of affects, affectations, and affections.

Theory of Mind is the concept that people can use past experiences and knowledge to predict and/or explain another's behavior. It is the idea that one can figure out, perhaps, what another person feels, thinks, desires and believes. Apparently the majority of people, the 'neurotypicals,' can perform this grand feat at a young age and that it begins with pretend play.

An example for pretend play is the child's ability to take anything and transform it, for instance, using a banana to be a dump truck, or a teddy bear doll to represent a mother or father.

For me, this is tantamount to lying. Truly. One should use a tool for its purpose, there is an inherent rightness in that. So perhaps it is the NT child whose perceptions are squirrelly and it is only because the majority plays this way that it can be considered normal.

What is normal? It is only a statistic, but humans set much store by such numbers and for me that is a sign of their insecurity...If everyone has a car, and I get a car (even if it is a decrepit 1986 Ponitac Skylark) then I fit in. If I get a Lamborgini, then I not only fit in overall, I excel somehow.

But does anyone besides environmentalists consider the miracle of feet? I suppose weight loss specialists would also value the gift of mobilization.

My first pretend play insight was from television, which I knew was fiction even when my peers did not and still today many cannot tell the difference. Hmmm. There was a comedy show, Get Smart, and in it Maxwell Smart and Agent 99 had many "tools" that were unusual and that parodied the technology in espionage. I was totally fascinated by the idea that a person might take off a shoe and talk into it just like a telephone! To this day I will mimic the actor, whipping off anything--even a shoe--and bark out "Hello, Chief? This is Max!" I think it is particularly funny when I actually do that with a phone handset or cell phone. (Of course it is best when someone remembers the show!)

Perhaps this attention to playing with shoes is what instigated my interest in the social world in junior high school. Personally I think that it is poor timing for figuring out there are other important persons as SO MUCH goes on in adolescence.

This blog is too long...

Anyway, there is this game, a test, that psychology researchers use to determine if a child has Theory of Mind or whether it may be considered a "deficit." They are all complex, but the researchers think these set-ups are simple. Apparently many children already understand this game and on a type of 'auto-pilot' can predict behavior.

But I would like to suggest a different tact.

Sally and Ann are friends. Sally has a basket and a marble. Ann has a box. Sally leaves Ann alone, at which point Ann takes the marble and hides it in her box. The Great And Ominous Question that 'proves' Theory of Mind is: When Sally returns, where will she think that the marble is?

This, of course, is the wrong question.

Here it is from My Side of the Mountain.

How do you know that Sally and Ann are friends? How long have they known one another? Are they neighbors or school pals? Are they wearing similar clothing? Do they really have similar interests, especially since one has a box and one has a basket? Why does one have a box and one a basket? Is Sally related to Little Red Riding Hood who also had a basket? If there is only a marble in the basket, why? Misuse of space, if you ask me, as well as misuse of purpose. Girls don't play marbles, they play jacks. Boys play marbles, so why does Sally have a marble? Did she steal it from her brother? Does she have a brother? What color is it? Is it a cats' eye? Is it one of those big ones with lots of colors? If Sally and Ann are friends, why does Sally leave Ann alone, without any explanation? And if Ann is her friend, why does she take, or steal, the marble? Sally returns without any explanation and Ann doesn't even say "hi." Aren't they supposed to say "hi" if they are friends? I could generate another dozen question but you get the idea, don't you?

And you want me to think about Sally's thinking?

I have had tests like this, and truthfully, True and False or Multiple Choice questions are the bane of my academic life. There are just too many "threads" to follow, too many word choices. Connotations rule the speech world, and they are dangerous for me.

So I would like the Tony Attwoods to think (ToM?) about a different type of processing. We know that Aspies prefer to see details rather than the global picture. Could that not be true about these silly games? What if Aspies know they are games and are trying to figure out the POINT? Maybe the question should be....What is the therapist thinking you are thinking about this game?

And this face recognition/eye gaze thingee...What if, from birth, Aspie babies learned from the Brazelton Baby Dance that eyes lie? That faces don't always reflect true feelings and that the people closest to them HIDE themselves? What if that takes the place of cuteness learning (ToM) so early, so innately, that hiding one's self is the impetus for gaze aversion? One is asked to listen...the ears are on the side of the head, and the sound comes out the mouth. The mouth is statistically where Aspies tend to watch. That would not be a problem for deaf persons, why is it considered a problem for Aspies? That is from where the sound emanates! I don't hear with my eyes! In fact, I have to consciously close out visual input to listen with my whole heart and mind. Is a little gaze aversion too much to ask of NT'S?

Looking into one's eyes is paramount to gazing into the soul, and my rule is that this type of intimacy is reserved for those whom I love. I make eye contact, as painful and embarrassing as it can be, because it is expected. But I reiterate...people lie through their eyes and facial expressions. I often reflect that how a person uses their HANDS tells more about their true Nature.

I will confess to this: In Psychology Today, a few years back, there was a mini-test of Simon Baron-Cohen's work, about 100 faces with emotions assigned to them. I have been a performing artist, I read alot, and I watch lots of films. I thought I would "ace" this test.

I got four faces correct. And this summer I read that they, Baron-Cohen's team in England, have identified like 451 different emotions. Like, we NEED that many? Isn't life hard enough?

Which brings up the issue--WHY DO PECS BOARDS ONLY HAVE 3 or 4 EMOTIONS ON THEM? Sad, Angry or Happy...how about BORED? Joyful? And why not use REAL faces not line drawings? Aren't Real Faces and Real Emotions the POINT?

I digress.

There are these thingees labelled emotions. Sigh. Aspies are a paradigm shift. I prefer to laugh and dance at funerals because the person is FREE. I cry at movies, but not in life. I think, though, that Aspies have not the monopoly on this difficulty with emotions.

The entire male portion of the human race also has trouble. I asked my husband for like 10 years, "How are you feeling?" I ask this of many men. Now most people actually misrepresent the Truth, but men almost always say FINE. They are thinking about PHYSICALLY feeling fine. I learned the social lesson shortly after graduating college...the question refers to emotional feelings. HOW ARE YOU FEELING? can be a mere greeting (a concept which took me a long time to understand and is one with which I still struggle) or a genuine inquiry.

A wedding is joyful, but people cry. A birth is painful but people smile and rejoice. Time is an invention of industry and its requirements of people, and being late for work or appointments makes for Major Stress, but it is not REAL.

So I wait. Tell me a story. Tell me the story of the odd connections and leapings and rules of the majority. At the rate of autism incidence, it would be good to understand the Typically Developing. Auties may be the majority someday and I think that we think that you all think maybe we could learn not to judge, not to use sarcasm, not to tease or bully.

You think?

Auties, The Final Frontier

If I cannot travel in a space rocket, then googling and blogging is the next best thing. I am amazed. When I was liberated from my desperate search for normalcy with the diagnosis of Asperger Syndrome 13 years ago, I was ecstatic because nothing else in the medical paradigm answered all my questions and pain. Most of my early research was in medical libraries and I had friends, not practioners, in the medical world who helped me locate information and statistics.

Now -- WOW! There is so much information, research, data, and opinions..and opinions...and diatribes and system dumps and ouches and then some more information...all happily launched and ensconced orbiting merrily in cyberspace. Can any site or cite be trusted within this morass of electrical leaping about? Can books be interpreted and utilized with confidence?

This is a fair and serious question. Here I sit in a small cottage in a small town in a small state with my large family reading about autism online and on paper (why is one a compound word and one not?) for my course work. So I check out the required reading. Interesting videography cuing and auditory cuing concepts to learn social skills. Yep. I could use some of that.

Then I began tabbing through links and find all this STUFF that includes some marvelous insights and tender communications and then there are those who Whine. But especialy sad are the testimonies from so many of my compatriots about the teasing and denigrating that they have lived through. Some of the saddest are statements like "Asperger's is the new fad, there's no such thing. It's just an excuse for self indulgence, laziness, and rudeness."

My favorites...."I don't believe someone so smart can be so stupid." And the ubiquitous...."You are too intelligent-you scare me."

Perhaps that very fear, so capitalized upon by dictators over history, is why we are teased. But there is good news, there are good people studying and exploring, without prejudice, and searching for a new paradigm.

People ask, parents and researchers ask "Why is Autism happening?" and they think the answer lies in medicine, toxins, allergens, genetics. It does not. The right question is "Why is Autism happening?" and the answer is BECAUSE WE ARE NEEDED. The answer lies in seredipity, not science. There will aways be those who are indefinably yet undefinably different. The gift that we are is to help others Trust, Love, and percieve Beauty. That is why Autism happens.

My joy at never having someone suggest bipolar, multiple personality dissing order, obsessive compulsive dissing order or narcissism is boundless. However, judgements are yet rampant, like PRESUMING I am arrogant or rude or self-absorbed and foolish. One of my concerns, not a diatribe, is that the"helping professions" have been trying to guess at what is inside the thoughts and hearts of people who speak a different language, live in a differently scaffolded reality. The language in my heart and mind follows a star, not a textbook. I am not lonely, but I like solitude. I am not rude, I prefer honesty. BUT I am learning diplomacy. Others collect objects. My objects are words and ideas, my gift synthesis.

Specialization in industry and science, history, and art, is acceptable practice. There are few generalists in technoculture. Autism stretches those limits and boundaries, and the answers to relating to this world are cross-disciplinary. The Occupational Therapists, the Speech and Language Therapists, the psychologists who put aside their doctrine to look beyond, the writers and artists and poets, the computer programmers who allow this chaos called the Internet to flourish so we can "talk" across all cultures, all countries, and the loving educators who yearn to perceive the person within, philosophers and anthropologists...and many more...this nexxus of communication is where the genuine progress wll be developed.

I get frustrated reading the experts and what they think is going on inside. Yes, my face always looks serious or sad. No, that is not my emotions. Yes, I use 'big words.' No, I am not trying to make you look stupid. Yes, I have too much talent or too many words or too much need. No, I am not talented enough to make relationships work; I have not enough words to heal each hurt; my needs are the same as everyone, read Maslow...or Kierkegaard...or Pascal...or Scripture. I am not broken although I feel that way. I do not LOOK autistic (should I start drooling?), tell me what autistic looks like.

Auties are the ultimate specialists. Talk with me.

Oh, and being a specialist of special interests and using vague non-descriptive nouns like STUFF and THINGEE is not a contradictory affect but fun, an indication of a mind exploring more fascinating meanderings...well, I can be optimistic!

Reading the interpretations, the guesses that are wanna-be answers, I think they are painful. I am willing to dialogue and share. Be not afraid. (You and me.) I only bite on Tuesdays, in Belgium.

And if you whine about the pain of being autistic, or the pain of living with someone wthin the spectrum, be not surprised if I offer you some cheese and crackers...Anyone for brie, Carr's peppercorn whole wheat crackers, and cabernet sauvignon?

When so much is New, what is aging?

What happened to separation of Church and State? All Holy Eve (which is NOT a druidic holyday but Christian in its roots) was set aside for praying and celebrating those who have gone beyond this bodily existence. It is in its essence a celebration of life eternal as well as an admission of our dark side.

So humbly entering into this darkness I went on a first...a haunted hay ride with my 3 younger sons, 8, 13, and just-turned-17. I was disappointed as the wagon was pulled by a tractor, not horses. The horses were hurt last year, so we shivered under the stars and a wonderful full moon, howling at the silver circle between the vignettes rousingly acted by local teens.

And yes indeed, I was spooked several times.

And this evening I toodled along behind my "herd" of birth children and neighorhood children as we bounced into spooky yards, driveways lined with lit pumpkins, homes with flashing bats and skeletons, one even hosting a flatscreen television with ghoulish animated rappers. VERITAS!

And today is my second day as a blogger, not a pretty word nor a descriptive word but a technoword, not lovely but that's where my thoughts come in and the photographs evolve.

OF COURSE, if others can invent words then so can I, and so....TECHNOWORD.

Another first.

But now it is time to read a story to my neurotypical youngest, 100 % boy, rascal, pirate, Jedi, dinosaur hunter, hugger and smoocher. My Aspie tween is writing his novel. My ADD young man is competing with his 21 year old brother on Halo 3 (can't see the point, but my addiction was Tetris and Pacman, so what could I know?), and my lovely young woman is at, horrors, a Halloween Party...oh, no pun intended.

Okay, so my Aspie tween was watching the big guys play Halloween Halo online...that explains all the NOISE rising up from the basement! Another first....zombies in my home! Can my highly sensitive body and imagination recover from all this noise, flashing strobe lighting, creepy ghosts and toddler princesses and preschool Siths (whose parents were born AFTER the first Great Star Wars film) and SUGAR?

Well, I guess it's time to wipe the grease paint off of my face...I went as an alien from a multispectrum sunlit planet...third from the right straight past Orion.

And did I ever tell you that I cried when I first watch ET on the big screen the very first time the little guy said..."Home...phone home..." Do you think I could "Google" pics and try to make the same interstellar communication machine? I found a turn table under some boxes in the basement last week....

Last Night or early this morning I dreamt I forgot something and I did...The reason my pup is named Shakespeare is because I love reading and performing and directing and designing the Bard's works. My undergraduate degree is in acting and directing. I have directed, designed and performed for many regional community theater companies.

I earned a MS in Public Policy Analysis specializing in health and education issues analysis. So going into Autism Advocacy is a continuation of a thread of interest in the human person.

The rest of the Asimov quote....
The stars, like dust encircle me, in one vast burst of Light; and al of space I seem to see in one vast burst of Sight.

The Stars like Dust encircle me

A quote from Isaac Asimov...

I am named CarolAnn, but I have had many names and many labels. I am an artist, working in watercolors, acrylics, pen-and-ink, and CRAYONS. I am a musician and I play guitar, piano/keyboard, and recorder. I have cut an album and I suppose stated that way dates me? I used to play coffee houses but now I play in churches. I am published as an essayist, poet, short storyist, and political cartoonist. I am a Wife of 25 years--a significant statistic! I am the mother of 5 birth children and dozens of souls that float into and out of my life. I used to scuba dive and ride a Suzuki 850 bike and I love horses, dogs (my service dog is a miniature dachshund mix named Shakespeare Aristotle Redboots...poor thing but that should tell you all more about me), and cats...and eagles.

I live in a world labelled High Functioning Autism. I love the night sky, the wind, and the ocean.

I am now enrolled at Antioch Universtiy in Keene, NH, in their Autism Spectrum Certificate Program. Actually, it is titled Autism Spectrum DISorder, but I am trying to change that idea.

This blog consists of reflections based on the course Introduction to Counselling Interventions, both information from the class proper and the readings supporting the course.

But today it's just me.

And I have no idea where this program will lead me. This time last year I was in hiding and didn't wish anyone to know anything about my diagnosis...I have had quite enough teasing and sarcasm, thank you. Now I am in a graduate level program. I know I want to help people, and I already do that thanks to the gluten-free/casein -free section of the grocery stores. When I am shopping I often stand near a crying, or sighing Mom, who notices my confidence in snatching up packaging and who literally begs..."Do you know about this diet thing?"

And of course I do. And we talk, and I visit them and learn to love their kids and help with emotional support and resourcing.

So I am an adventurer as well, and this program, to paraphrase Peter Pan, will be an awfully big adventure. BTW, MY HOME is the THIRD star to the right--just past Orion, and straight on to the rainbow.

Each person I meet is a star, and we form constellations here on Earth. It is my hope that I will help "polish" a few stars so they can shine as brightly as they choose.