Sunday, January 17, 2010

Living With Autism

Living with Autism.....

I was diagnosed with severe infantile autism when I was only two years old. Early intervention is the only hope for someone who has autism. My early intervention program was done at home by my very devoted mother, a now retired band teacher. Most of my communication before and even during early intervention was done through tantrums and "gibberish." Mom during my early intervention helped me to learn the letters of the alphabet using magnetic letters while I sat in the bathtub. This is how my love of water began! I learned colors with a xylophone that consisted of colored keys. I could not feed myself for a long time due to "failure to thrive" syndrome so I was force fed. Eventually I ate blended food that was blended in a blender. I didn't want to eat solid foods as I was afraid I would choke! However the time would come when I would have to eat solid food. One day mom pretended that her blender broke and I would have no choice but to eat solid food! I am happy to say that I've been eating solid food for years and I love it!!! Music was used to help teach me certain concepts. An example is if I was asked a question and answered with the correct answer, mom would sing while bouncing me on her knee!

There's not a great deal of options from the government available for not only children but adults living with autism. I'd like to see more government funded programs become available to help those with autism find meaningful employment and education. It would make me very happy to see children living with autism receive early intervention to save them from being institutionalized! It astonishes me that more children are being diagnosed with autism today than in years gone by!

I have written a book about my life with autism called "Autism: Journeys with Dianne" and I believe this book could be a valuable resource for families who are dealing with autism. This book is in print but it is not very well known right now. Teaching strategies that were used during my early intervention are discussed. I call my early intervention program my "preschool" years. In addition to my early intervention home school program, in my book I dispel the myth that people with autism cannot experience deep emotions such as love and grief. I was fortunate enough to experience the feeling of falling in love with two wonderful men, one of them having had autism. The man with autism whom I fell in love with was also worked on with an early intervention program and became fascinated with eagles and photographed them. He couldn't speak until he was ten years old. His life was tragically cut short when he was killed in a climbing accident. The man's name was Benn Kramer and he was very well known not only in British Columbia for his photography but also the "Swim for Hope" which is done in New York. Benn swam around Manhattan Island to raise money to help children living with autism. In my book I talk about the relationship I shared with Benn Kramer and my first love who was Jim Alldread. Also I talk about how the deep profound grief of losing these two men has affected me and how it has made me a more compassionate person. People dealing with grief may find this book to be a source of comfort. Dreams and goals for my future are discussed.
Here is a preview of what is inside this book!



Throughout this autobiography I hope to demonstrate, and document the many experiences and perceptions of severe autism. These experiences will outline how I lead an independent lifestyle.

I have immeasurable thoughts, feelings, and opinions. Expression of the many thoughts, feelings, or opinions have at times, been significantly challenging. My comfort lies in written communication for the most part and is one of the motivators for this book.

It is hoped the reader will see my resilience, and compassion for others. It is also hoped the reader will join my life’s journey.

Early diagnosis and skillful intervention are key components toward understanding and successfully thriving, in a world filled with numerous challenges, choices, and opportunities.

It is hoped this book may assist the many families that must deal with autism on a daily basis.

Welcome to my unique earthly journey we now call life.

C H A P T E R 1

On March 6 th, 1976, at 1:30 p.m., Brandon, MB, our Dianne was born. It was a gloriously warm day, snow was melting and that elusive spring day was promising to arrive. My birth was by Caesarian section because I was promising to enter this world foot first. Due to many first-born birthing difficulties on both sides of my family, my mother chose the Caesarian section so as not to cause any birth trauma or defects. For example my father was born feet first and apart causing near death to his mother and himself. My Grandmother’s first-born child was also in the breech position and only lived for three weeks. There have been closely related aunts, with a history of first-born birthing complications. Thus, using a general anesthetic, I was successfully delivered by caesarian section. My birth weight was five pounds, two ounces and my length was 18.5 inches long.

The opening few days of my life seemed normal. There were the usual ounces weight loss, and I was somewhat jaundiced. However, the nursing staff did notice some difficulty sucking. Therefore, the decision was made to bottle-feed rather than breast-feed me.

Within a few days, mom and I were released from hospital and we began a new life journey residing in Brandon, Manitoba. As the early days went by, mom began wondering if everything was normal because from birth to approximately three weeks of age, I was showing no signs of ever being hungry during the day or night. That meant no crying for anything, including food! Therefore, mom decided to place me on some kind of feeding schedule that involved setting an alarm clock midway through the night for feeding and diapering. During the day, I was fed at times coinciding with household meal scheduling. Contact with the physician resulted in the recommendation as a first time mom, to not worry about feeding, “nature will take care of things.”

Approximately, six weeks into my life, there was a shift in behavior. I was now in the habit of sleeping most of the day except for feedings and crying incessantly from approximately 8:00 p.m. until 3:00 or 4:00 a.m. regularly. No amount of feeding, comfort, or gripe water, could solve the problem. Another trip to the doctor resulted in a prescription for Donnatal-a barbiturate in an effort to solve the nighttime crying episodes. The urgent crying continued consistently for two years! My parents could do nothing to stop the crying and no medical person could explain the reasons why. My parents discovered that car rides made the crying stop; when I was placed in my room, the crying resumed. If I was picked up to be comforted, my body would stiffen. Eventually, it was discovered that perpetual rocking in an armchair while being held, became a relief from urgent crying episodes. Eventually, a small, plastic chair with rocking springs became my chair of contentment. Every time I kicked my legs, the chair made a rocking motion and considerable time was spent rocking.

As the weeks went by, my crying was accepted as routine. During the weeknights, my mom got up, to be with me. On weekends, my father would get up to look after me. My parents tried to “spell” each other off where possible.

During the early months of my life, pureed baby food was frequently used as well as formula. Throughout these early feeding days, mom was carefully monitoring how I was responding. She was developing increased misgivings. Based upon strong intuition and by the fifth month of development, there was no hand to mouth pattern that would allow self-feeding. All bottle feedings required the bottle to be held for me.

From five months to ten months of age there wasn’t much change behaviorally. There were a few physical changes, such as teeth and weight gain. I was still crying, rocking, and not self-feeding.

A new behavior was beginning to emerge. Whenever there was a change of routine, lengthy temper tantrums resulted. Whenever something new occurred in my life, the response was usually one of confusion and terror. The unknown threatened my security and understanding of my world.

When I was 7 months of age, our small family moved to Ethelbert, Manitoba. My father was employed as an English teacher at the local school. Mom was apprehensive of the move because the nearest doctor was located in Dauphin, Manitoba, a 45-minute drive from Ethelbert. However, home became where the source of employment was.

Around the age of one, it was becoming obvious to my parents that I had some form of developmental delay, yet to be diagnosed. The predominant clues were as follows: no hand to mouth movement, refusing liquid from a bottle or a cup, feeling threatened when there was change of routine, placing the forefinger in my mouth, while exploring blanket surfaces with the middle finger, of the same hand, not walking, crawling, no involvement with toys, no eye contact and no communication.

After careful deliberation with the doctor in Dauphin, mom decided to try his method for solving the feeding problem. The doctor explained that “any baby will feed itself if hungry enough.” We thus opted to offer but not force-feed Dianne for one day. After one whole day of being offered food at regular intervals, no break through occurred on the feeding front. Mom calmly resorted to bringing her spoon to my mouth for feeding. It was later determined I had “failure to thrive” syndrome in addition to severe autism. Therefore, I never would have learned to self-feed, no matter how starved!

Throughout these early months, mom had spent considerable time doing activities with me and receiving limited responses. It was most frightening to understand something was very wrong not to mention despairingly lonely. No one really comprehended the magnitude of this behavioral problem. Living in a small community, devoid of close medical contact, further isolated my small family.

On December 21st, 1977, a new baby brother became part of my family. When he came home from the hospital, I had already celebrated my second Christmas. The most meaningful gift for me had been a small wooden rocking chair. This chair could not be tipped and I easily maneuvered it throughout the house. My brother, being just born and somewhat inactive, did not receive much of my attention.

In February 1978 the first major dark cloud floated over my horizon and that of my family. In the early hours of one cold dark winter morning I had developed a sinister fever and flu. The doctor suggested hospitalization. Mom knew there was going to be a feeding and drinking problem in the hospital and explained my forced feeding procedure to Dr. *Steed. Soon, I was hospitalized, resulting in a profound change in routine. There would also be a profound routine change that soon sparked tidal waves of grief, confusion, speculation, anger, and fear.

Names with a * have been changed for reasons of anonymity.

Living 45 minutes from Dauphin and caring for a new baby brother, it became difficult for mom to see me daily. Therefore, daily phone calls were made and reports given indicating I was responding to medication. Mom was asked how the feeding was progressing and was not made aware of any feeding problem. My parents, having had feeding problems for 23 months, wondered how there was suddenly no problem! They arrived at the Dauphin hospital and became shockingly horrified. I was lying in a listless fetal position, backside elevated in defiance of the world, eyes in a glazed living death stare, and body wrapped in a barrage of tubes. How could this be? Ten days earlier, my energy rocked the chair all about the room, I seemed content, and did respond to mom’s feeding spoon. Whenever, there was music being played the chair would rock in rhythmic time, accompanied by the soft vocal hum of myself. Now there was silent despair amidst the hum of hospital routine. Dr. Steed had expressed regret for not informing us that Dianne was being tube fed through her nose. Mom and Dad thought they should have been informed of the hospital’s feeding difficulty so they could have the option of living in Dauphin, and personally feeding me.

In any event, Dr. Steed expressed far deeper concerns over my developmental delays. In the beginning, he conveyed the theory that I might have Rett Syndrome. He offered that insight as a result of my developing one verbal cue then weeks would go by and the verbal cue did not re-occur. This is what happens in the early stages of Rett Syndrome. Dr. Steed also confided he was going through the Rett Syndrome fear and despair in his personal life with one of his grand daughters and he saw blatant similarities with Dianne.

My parents in shock, disbelief, and first hand knowledge of my development, disagreed with the Rett Syndrome theory. They wanted Dr. Steed to focus on the physical component of my illness. Dr. Steed became angry and expressed the opinion that I seemed in my behavior, to exemplify patterns of parental abuse or neglect. Dr. Steed further indicated that he had two other doctors examine me. Dr.*Beswal and Dr.*Sanford noted there were no marks on myself. However, when they took me out of my crib, no effort was made to walk. I crawled to the nearest corner and assumed the usual fetal position of withdrawal.

My parents were astounded that three doctors did these tests without their knowledge or permission. It was quickly discovered that there existed two choices:

Personally escort me to the Health Sciences Child development center for further testing or lose me to the children’s aid society.

The decision was made to personally transport me to children’s hospital, Health Sciences Center, Winnipeg, Manitoba.

Numerous tests were conducted at the Health Sciences Center. Some of the tests included behavioral observation as well as developmental tests. Upon completion of all tests, on the physical plane, I had pneumonia in one lung, and on the emotional behavioral plane the diagnosis was infantile autism.

Doctors in Dauphin had made an incredible mistake and my family felt vindicated, and relieved. There was no evidence of Rett Syndrome. Autism though life changing, is not necessarily life threatening. I was going to come alive when the pneumonia passed.

My mom became determined to obtain as much information about autism as possible. The general plan was to devise a flexible developmental educational plan unique to my personality, interests, and ability.


Commentaries on the back cover of this book:

Dianne writes her story with honesty and candor. It is a compelling insight into the struggles of living with autism. The pathos of two close relationships both ending in tragedy gives her narrative the drama of theatre.
…Jane Malcolmson, Midland Adult Education Centre, Carman Manitoba

Dianne shares her most intimate thoughts and feelings on life, love and tragedy. She is able to show great understanding of a million emotions during her passionate love of life and relationships. A wonderful story of love, life, death and rebuilding. Dianne shows many ways to search for answers in a questioning world.
…Sandy Riley, Benn Kramer’s swim coach, British Columbia

This short book by Dianne McCullough captures the essence of one person’s living with, adapting to and developing special abilities as a person with “autism”. In a context of both the joys and tragedies of life, it speaks to the uniqueness of all of us and how we can all be “exceptional”. Dianne’s little book is a celebration of life and a celebration of believing in each other as the way to hope and courage.
…George MacDonald, Dianne McCullough’s counselor, Carman Manitoba

Please email me: for information on how you can purchase this book! This book is NOT in bookstores as currently I don't have an ISBN. I hope one day a publishing company will be interested in "picking" it up and that it will be in bookstores!! The cost of this book is $21.95 plus $6.00 for postage in Canadian Currency.


I now have a You Tube channel! In my channel I have uploaded a number of videos of myself talking about my life with autism. I used to be very secretive and even denied and/or grew out of my autism but now I want to make my story known! I hope one day the media will find my videos and do an interview. I really wish there were more services and programs available for adults living with autism. After high school there really isn't much out there. Often I feel "stuck" as a result. I have talked more about this in my featured You Tube video called: My Struggles With Autism As An Adult. I also have included videos of myself singing so that you will be able to see another "side" of me!! Just copy and paste this URL in your browser to view my You Tube channel and videos!

These photos are in loving memory of Benn Kramer.

Below is a video of myself singing "Love Divine All Loves Excelling."


I had an interview for a radio show in the fall of 2012.  I did a recap video of that interview.  I would like to include the transcript here!

Intro: Hi.  This is Dianne.  Recently I had an interview on an Internet Radio show.  In this video I am going to ask myself the same questions that were asked in that interview and answer them.  This is going to be pretty much the same but I have re -worded the questions (these are the same questions but just reworded as statements) and did add a few details that I didn’t add in the interview.  So let’s begin! 

***Interview Starts Here!!***

 I was asked about my voice, and I was told that I was quite the songstress, and if I had made any CD’s or sung at events.

   Before I answered the question I gave  some background.  Music was used as a learning tool for me.  I can remember being told that music would be used in learning games.  One game was where my mother sang a song called “High Stepping Horses” and she would sing that song while bouncing me on her knee if she asked me a question and I answered it correctly.  However if I gave her an incorrect answer the singing and bouncing would stop.  The broad based term for this is  called Education Through Music.  As I got a little older I would often bounce on my bed singing songs.  During my teenage years I sang in my local church choir.  I took voice lessons during my high school years.  These voice lessons were given to me as high school credits.  Currently I volunteer singing and playing the piano at the local nursing home.  How I love to see people smiling and singing along as I make music!  My music making must be great medicine for those residents even though I do not hold any degrees!  I have sung at one wedding and some Christmas Pageants.   I often get asked to sing at the Special Olympics Christmas banquet on a yearly basis.  I haven’t made any professional cd’s but I have made some amateur ones using a MAC computer program called Garage Band. 
In addition I have included myself singing and playing piano on numerous You Tube videos. 

Currently I’m also learning to play the acoustic guitar!

 Next I was asked about my feelings about autism, and when I attended conferences and workshops did I find people that were similar to where I was at in my journey?

  I have to be honest here.  I’m not trying to degrade anybody but most of the workshops or conferences I have attended have included people who are not as high functioning as I am.  This makes it very difficult for me to mingle and make friends.  Either that or many of the people have different interests than I do.  I need to make it clear that it is not Aspergers Syndrome that I was diagnosed with.  I was diagnosed with Severe Infantile Autism!   In my honest opinion I think there’s a difference between Asperger Syndrome and High Functioning Autism.   I can’t over emphasize this but early intervention was crucial for me!!  I wish I could attend more events where there are more people who are high functioning like I am.  Maybe then I could mingle and see what interests I share with them.   Due to the fact that Autism is a spectrum disorder it makes it difficult to make friends with peers.  No two people with autism are alike.  We’re all in different places on the spectrum.  I like to think of the spectrum as a rainbow and everyone is in different places on that rainbow.  In fact in my honest opinion I think the rainbow is a better description than the typical puzzle for autism.  Puzzles to me represent confusion and missing pieces.  The rainbow on the other hand to me represents spectrum disorder and the colors of the rainbow represent hope!  One other thing I would like to mention that I did not mention in the radio interview is that I prefer to be called a person living with autism instead of Autistic.  If someone does call me “autistic” I usually don’t correct them but it does bother me.  I have learned however that everyone is free to their own view on that.  I just prefer person living with autism instead.

I was asked about my feelings on the benefits people with autism receive and what can be done to help them better in the future?

  This was a great question!! This was a question that I have pondered in my mind many times. 
After high school, in Canada, there really isn’t much available for people who live with autism.  Sadly many people with autism end up on government aid or at some job that doesn’t suit that person’s capabilities.   I would love for these people to get jobs or careers based on their talents and interests. 

I would LOVE to one day see a school opened for those who have attended high school.  Such a school could provide some further life skills training like money math, basic cooking classes, and other life skills.  This kind of school could also provide training for a job of the person’s choice!  It would be like a college except that there would be all kinds of help for people living with autism.
On a related note I really wish that a pension of some kind could be provided for a person living with autism who has reached 67 years of age.   Presently, in Canada, after a person reaches that age they lose their benefits.  This really scares me!  There is a difference between someone with autism who can’t work and someone who has no disability who just doesn’t want to work!  What is someone living with autism who has reached 67 years of age supposed to do financially for any health struggles that may arise without any benefits available??  Don’t get me wrong.  I think it’s great that there is emphasis on helping children and that needs to continue.  I would just like to see more services and benefits for adults!  After all… a child living with autism will become an adult living with autism!

 In the fourth question I was asked what the story of my life was?

  I had replied…Wow!!  If I were to tell you the whole story of my life it would take a LONG time!!  I have so many stories but I will share a few with you.   I will admit that I have not been dealt the best set of cards to deal with in life.  In other words I have been given a very difficult life with few resources to use.  However I’m trying to continue to build my life with the few resources that I do have. 
Not only have I had to deal with my struggles of autism but I have had to deal with profound grief.  There were two kind men in my life who both died.  The second one too had autism.  He was killed in a climbing accident seven years ago so I was once again thrown into “death’s cold grip.”  This goes to show that someone living with autism is quite capable of experiencing feelings of sadness, joy, etc. 

One thing I must talk about that is important to me is the fact that I need animal companionship to help me cope with the loneliness that comes with my autism.  Sometimes I have difficulty trying to read people’s social cues.  Other times people may just judge me because I am quote “different.”  Where as my cats accept me for who I am. 
I find it very rewarding to just come home and pet my cats and listen to them purr if I‘m feeling down.  Living with autism is very lonely for me!  Before I got my first cat I was living in a “shell” and didn’t want to mingle a whole lot with people.  In fact my three biggest interests are animals (meaning pets), music, and some computer work!  Ideally a job dealing with these three interests would be good for me.  I have a feeling that if I didn’t have autism I may have gone into the Veterinary profession working with cats and possibly dogs. 

I would like to make it known that I do have certification in animal care online courses and a pet first aid  course that I also took online.  Having these certificates makes me feel like I have a “part” of that profession.

I need to emphasize the fact that I have quote “whacky hours.”  Meaning I do better at night than I do during the day.  Often people do not understand why that is and that frustrates me.  Not only do I function best at night but I find night time to be more quiet and peaceful than the day.  Daytime seems to busy and over stimulating to me!  Think of it this way!  If I had to keep quote “normal” hours it would feel like I was running in crisis mode!!  I often feel like it is hard for me to fit into society given the fact that most of the world will not accommodate my whacky hours or come to some sort of a compromise.

I recently attended a workshop about learning styles.  This was my favourite workshop!  At this workshop I wasn’t really surprised to learn that I am definitely a visual and kinaesthetic learner.  I would not do well just listening to a lecture. 
I need pictures, visuals, and hands on experience to learn.  When reading I’ll sometimes use my finger to follow along.  This should not be discouraged.  Another interesting thing I discovered at that workshop is that a person learns the most by teaching others.  I feel I have learned a lot about myself by talking about my autism and sharing my story with other people. 
 I was asked How often I see in others’ autism a shade of myself or who I used to be?

  The one common thread is how profound the disability may be.  This is why the term autism spectrum disorder is appropriate.  It has been my experience that we are all different.  In as much as we are all different there has to be flexible educational approaches.  For example with me, music and water therapy worked very well.  With another child puzzles might work very well.  Find out what they’re interests are and build an educational program around that.

 I was asked how I plan on using my voice and musical talents for awareness?

  Here is  how I replied to this question.  One day I would love to write songs about some of the struggles I have been through.  What’s hard for me is trying to figure out the theory of the music and also trying to get the lyrics matched up with a melody.  However I would like to say that I have written a book called Autism:  Journeys with Dianne.  Unfortunately this book isn’t available in bookstores because I don’t have an ISBN.  People have to come directly to me if they’re interested in purchasing a copy of my book  It would be nice to one day have a publisher become interested in helping me.

I was asked with so many music tryouts that are looking for talent have I ever considered going through one of those?

    Here was my answer.  I have considered going through a number of tryouts.  However I have come to realize that my musical talent is best used to help heal those people who are sick and elderly more than just mere entertainment.  I can’t tell you in words how it feels when I see someone tapping on their knee, clapping, singing, etc. when I use my musical talents at the nursing home.  Even though I am not a certified music therapist I see the therapy (medicine) my music brings to these people!  My music playing and singing gives them a chance to relive happier moments.  I find it rewarding when I see someone with dementia who’s just sitting there staring off all of a sudden join in and sing when they hear a favorite song!  This is very fascinating to me.

 I was asked what I thought was the biggest challenge I’ve ever faced in understanding my own autism?

  What a great question!!  I would say my biggest challenge was denial!  When I was in high school and early adulthood I denied I even had autism.  Either that or I just simply said that I out grew it!  I did not want to admit that I have autism because it made me feel “out of place.”
 It wasn’t until 2005 when I began to accept my autism diagnosis.   It was the man who had been killed in the climbing accident who finally helped me learn to accept my diagnosis because he too had autism.   Another challenge in dealing with my own autism has been trying to come to terms with looking for employment in a field that I have talent and interest in.  As I mentioned earlier, my three biggest interests are:  music, pets, and computers. 

I was then asked did  I think reaching for the stars and facing fears is something more people living with autism should do?

  This was my reply.   Absolutely!  I must mention that early intervention and education are key factors for people who live with autism!!  These factors pave the way for them.  A person who lives with autism should be encouraged to go after their dreams instead of being told that they can’t do something!  I believe with the right help and resources many dreams can be accomplished or at least try to be accomplished!

I was thanked for a great interview at the end of the radio show and was asked if I had any parting words or music.  Here is how I answered that final question.

    There have been countless people who have helped me along the way.  There is a song that is very fitting which comes to my mind.  The song is called “You Raise Me Up.”  For the radio interview I had made an amateur CD of myself singing and playing that song.  I explained that it was amateur and that the sound may not be perfect but I tried my best.
I had held the cordless phone up to the CD player so people could hear it. 
 I now have  a video of myself singing and playing that gorgeous song on another You Tube video! 

In addition to those countless individuals who have helped raise me up over the years I also like to think of myself as raising people up at the nursing home with the use of my musical talents.  To all of those who have helped raise me up…..thank you from the bottom of my heart!!

And that is a basic recap of the interview.  I hope you enjoyed watching this video and I hope I was able to shed some light for people out there dealing with autism.  I will conclude this video by saying “Good luck with your journeys!!”

Below, you will find a video of myself singing and playing Josh Groban's "You Raise Me Up."

*****One thing I didn't mention in my interview recap or the interview itself is that I have now gained an interest in Web Radio.  I think it would be awesome if one day I could receive assistance in setting something up with that!!