Tag Archives: autism

An Interview with Eustacia Cutler

Most anyone who is part of the Autism Community, would recognise the name Dr. Temple Grandin. But would you reckognise the name: Eustacia Cutler?

Some people know immediately. Others have absolutely no clue who this person might be. Eustacia Cutler, is Dr. Temple Grandin’s mother.

What is Autism

Autism is a developmental disorder of the brain. As the brain matures, it becomes neurologically (wired) different then what is found in the Neuro-Typical (non-autistic) general population. Approximately 1 percent of the population (1 in 88) are affected by an Autism Spectrum Disorder.

I had a few moments with Ms. Cutler at a recent Autism conference held in Tucson. A charming woman, with a distinctive Boston accent.

The Politics of Autism

Autism and Politics. Why isn’t the political system doing anything to help?

There is a great deal that we don’t know. That’s why I am working to develop this fund, the Temple Grandin/Eustacia Cutler fund to support and guide all members of the family. I think basically Autism is a family dis-order.

This is one of the reasons politician’s don’t approach this. They want to be kind. But how do they do this? The part of the problem with the government is they are not always sure what is the most helpful thing to do? I am not sure either. They can’t take care of the situation. In the end, the family is going to take care of the situation. The family is the lynch pin.

This also means, school and therapists. But they [politicians] can’t handle the life problems. They can only guide people and teach them to handle problems themselves.

There are not going to be answers. There are only going to be choices.

Changes to how Autism is diagnosed

Controversy surrounds proposed DSM (Diagnostics and Statistics Manual) changes to remove the diagnosis of Aspergers and roll that into Autism Spectrum Disorder. What is your opinion?

I am not in a position to evaluate it. I will watch it. My role is be an ambassador. To explain and listen to the doctors.

Learning difficulties

Temple is a visual learning. As a child, she was almost a “tape recorder.” What role did hearing playing in her learning process?


We have different ways of connecting neurologically. We are all visual learners in my family. It’s not always information that’s appraised. That’s why I talked about the difference between conceptual thinking and categories. How hard she has to work, for the conceptual thinking, which does NOT come to her neurologically.

Autism Speaks

The organisation Autism Speaks. Do they help? Does they hurt?

Interesting question. People think differently. It’s corporate thinking. Of course they have done good. They have raised huge amounts of money. They have put a great deal of it into research. All help is good.

A followup question. On several websites, there are posts that say: “Autismspeaks does NOT speak for me.” Comments?

I have no way to appraise this. I see the tremendous need each of us has to hang on to our identify. The fear that particularly High functioning Apsergers have is losing themselves. Research will change them.

At a conference that Margaret Bowman did (from Mass. General Hospital) in Bakersfield California, a young Neurologist was talking about medications. A man stood up and said: “I am Asperger. Is the point of your research to do away with me?”

The Future

A final question. If you could leave one thought to the future generation about Autism, what would you tell them?

Choices. We change. The capacity to change, I think is an extraordinary gift. The choices change us. We have some sense in our neurology of some spirit in us, to be the person we would like to be. In the choices, clarify it for your child. You make the choices for your child to be fulfilled. I would say that. No, Temple is not cured of her Autism. But she is fulfilled. She is fulfilled as she would like to be fulfilled.

The film Temple Grandin is an excellent biopic of Eustacia Cuter, and Dr. Temple Grandin.

Precious Gifts

We hear the word “precious” bantered around like it is something ordinary. We might hear: “Oh doesn’t so-and-so look precious?” The word seems pedestrian. We hear it everywhere.

I like this definition of precious: (from dictionary.reference.com)

(something) highly esteemed for some spiritual, non material, or moral quality:

It is uncommon. It is exceedingly rare.

This past week, I realised I had two very distinct precious gifts.

A person who is part of my extended family was ill. He came home from the hospital, to die. We didn’t know when, but was certain that we had a few days. He came home on a Friday. Despite all, we had a great evening, enjoying each others company. The next day, Saturday, we also enjoyed a wonderful (awe filled) day. He wanted sausage. I went home to prepare the peppers and onions that would accompany the meal. He didn’t eat a lot, but as I jokingly said, he always ate with gusto. He savoured every morsel. It was time to rest. He was having difficultly moving, so his wife called me to help him back to bed. A few hours later, he had passed. No lingering illness. No suffering. He was gone.

The Bible says:

“Precious in the sight of the LORD is the death of his faithful servants.” (Psalm 116:15 NIV)

While I was saddened at the loss of a dear friend, I realised that God had given me a great honour. I was privileged to help prepare the last meal he would eat on this earth. While I wasn’t there physically when he passed, I knew that he was safely in the arms of our beloved Saviour.

Exactly a week later, I was visiting a friend who is severely autistic. I have high functioning Autism. I share a kindred bond with other Autistics, that Neuro-Typicals (our name for people who are NOT on the Autism Spectrum) would not understand. One of the other residents there, a non-verbal Autistic, had been seated in the living room. He enjoys playing with toys, and I asked the staff if it would be okay if I gave Michael a toy. They said it would be fine. As I carefully placed the toy in his lap, he took my hand in his. He looked at me, then carefully took my hand, and kissed it. People with Autism are usually poor at non-verbal communication. This simple act communicated volumes. God had again bestowed, a precious gift.

“The closer we are to the Lord, the more likely He is to commit precious things and precious people to our care. Let’s love him deeply, that we might be privileged to serve our Lord as John served Christ.”

Richards, L., (1990). The 365 Day Daily Devotional, pg 810, Wheaton , Illinois: Victor Publications

The Sameness of Days

Reprinted from here

Wayno

The Sameness of Days

Those of us with Aspergers/Autism find it difficult to navigate in an environment that is both foreign and un-inviting to us.

On one hand, you will find we like things in our environment, the same each day. We may wear the same clothes, watch the same tv program’s, eat the same food. We like things ordered, and to a degree, predictable. We want to find the keys and remote in exactly the same place each day.

We almost ritualise certain events. I myself have a tendency to eat virtually the same things everyday. Breakfast is usually hot oatmeal cooked on a stove (NOT microwaved!) It’s not that we don’t know how, it is that innately we desire a sense of control and order over our environment. This is shown in the things we say and do. For variety though, I do have polenta occasionally, Cheerios, and on Wednesdays and Sundays – an omelette which I make for myself. It’s not laziness or lack of initiative, or even lack of knowledge (I am an accomplished cook.) We have a daily schedule, to which invariably, we internally adhere.

We sit in the same place in restaurants. Why? Because we know where everything is. God help us, if the floor is wet, and we have to sit someplace strange. (The booth next door.) I am fortunate in having a friend here, that understands that I need to scope out the inside of a restaurant to make sure it is not too crowded. Autistics NEVER like to have their escape path to the outside, blocked. Perhaps unconsciously, we position ourselves so that we can always see the exit. When things get too intense for us from a sensory overload (just several people talking at the same time in a room, makes a cacophony of sound, that overwhelm many of us.) I have left meetings simply because my escape route was suddenly cut off. Sometimes we need to exit a situation, that becomes over stimulating for us.

I was in the Emergency Room of a hospital here last week. Many of us, can’t filter out the distractions: lights, sounds, colors, noises, or odors that envelop us. And so we may ask to dim the lights, close the curtain or close the door. Anything to block the over stimulation. When I informed the staff that I had Aspergers, I might as well have said I am from another planet. Most Medical Professionals I have discovered, are 129% clueless when it comes to Autism.

My Primary Care Doctor, let me explain to him, what having Aspergers is like for me. He took the time, to accommodate Autism. His welcome and inviting tone and manner greeted me when I was finally transferred to a room. I didn’t have to explain. He already knew. More people would be wise to follow in my physician’s footsteps, and take a few minutes to educate themselves, on how Autism affects our daily lives.

A good place to start: All Cats Have Asperger Syndrome by Kathy Hoopmann

As much as we like things to stay the same, we also want to form bonds and friendships. That is an area, where we Aspies (as we call ourselves) don’t function well. We are unable to read the social cues and body language of the people around us. It is very hard for us to form relationships, simply because we don’t have the skills necessary to do so.

We isolate ourselves from a harsh and cruel world, because we are tired of the rejection and snide comments made by NT’s. (Neuro-Typicals. Our name for people that are NOT on the Autistic Spectrum.) We sit in the corner, and pretend to be a wall flower. We don’t belong. We don’t fit in. We feel like the proverbial square peg in a round hole. We go into survival mode. Magical thinking.

If we sit in a corner, we can be invisible and won’t have to talk. Gosh what do we talk about? I don’t watch sports, and the weather: Yup it’s hot out there, all right! Aspies are not interested in weather, or sports per se. But I speak for myself only. We’d rather discuss: books, movies, politics, religion, sex or music. Anything other then the dull. Mundane. Ordinary. We might discuss things which are resolutely insignificant to the world, but which makes our inner world, revolve.

Yeah we’re the kid in the corner who sits by himself, because he is so beaten up emotionally, that removing himself mentally into an imaginary world, might be the only method of coping. I am the adult, who sits in the same booth almost everyday, orders the same thing off the menu everytime, and sits alone. I talk to imaginary friends as well, because there is no one else.

Pets for many of us, are the only creatures we know on the planet, that won’t automatically judge us. They love unconditionally: just as I am. We don’t have to hide who we are. We are free to be ourselves. They give back to us, the love that the world so harshly with holds.

Many of us, are penurious. We give our time, instead of money. All we want is to be recognised for our contribution, however small it may be. We depend on others to remind us of God’s love and God’s forgiveness, by returning a simple please or thank you. Basic Human kindness. The little things.

We all need affirmation. What’s that? It’s simply saying the right thing, at the right time. Looking beyond the quirks and eccentricities, to see someone and something of value. Few people are willing to take the time to get to know us, let us stumble through friendship, and make a deep and enduring impression on our lives. Those few that do venture into the world of Aspergers, may find a deep, abiding friendship and loyalty that is unparalleled in their own world. But until that happens, everyday is like the day that came before. Nothing varies. Nothing changes.

Wayno Guerrini

internationalpress.com