So Near and Yet So Far:

Living with Autism

By Carmen B. Pingree

Hour after hour he rocks there, this beautiful little three-year-old stranger who is our son. Through the window the afternoon sun highlights his well-formed body and flawless features. Brothers and sisters run by, calling his name. He stares, riveted in his rhythmic rocking. Repeated attempts to hold him or share his world are stiffly rejected. … At night we lay him in bed, and our good night kisses are pushed away. … Half sleeping in the bedroom above, we hear the light switch being flicked on and off, on an off, by his tiny hand. Morning comes all too quickly, but he does not call or reach out for us. … We dress him and the cycle begins again. The English poet Alfred Tennyson unknowingly described our son Brian when he wrote, “He is so near and yet so far.”

As we watched our baby Brian develop, we grew uneasy with his unusual behavior. We were confused because he seemed so bright in some ways, and yet we could not reach him. His physical, social, and intellectual development were very irregular. Brian could hum the melody perfectly to “Softly Now the Light of Day” after hearing it only once, and yet he could not ask for a glass of milk. Even though he could undo latches and locks very rapidly, he had difficulty using a fork.

We also observed abnormalities in Brian’s responses to sensations. At one time he paid no attention to smells, and yet another time he would not taste any food without smelling it first. Sometimes oblivious to sudden loud noises such as the dropping of a cooking pot, at other times he could hear his father unwrapping a piece of candy in the next room. Similarly, Brian might exhibit no reaction to a hard bump on the head, but might arch his back as though burned when I touched him with my hand. I felt terribly frustrated when he would not allow me to comfort him at such times. I seemed only to add to his pain.

Our concern deepened with the passing months when Brian’s speech did not develop normally. When he talked, and he rarely did, he sounded very much like a robot, echoing back what other people had said but seldom expressing an original thought. Words were only meaningless collections of sounds to him.

Perhaps most frustrating to the family was Brian’s seemingly non-caring attitude toward others. He did not want to join in family activities, he did not respond to outreaches of brothers or sister, and he did not develop a respect for others’ property. Brian kept the family in a constant turmoil destroying mechanical equipment, tearing up books, and dropping things in our small fish aquarium. When he could find a screwdriver we had hidden for safety, he would use it on heating vents, door hinges, and electrical outlets. One day he managed to leave the house with a repairman’s screwdriver and had the taillights and rear view mirror removed from the repairman’s truck before the startled man could begin fixing the dishwasher!

It became necessary to have a lock on every door in the house to prevent him from destroying everything. Additional locks were installed on the outside doors to prevent him from running toward cars in the street. Unable to comprehend danger, he showed no change in expression as cars were suddenly brought to a halt to prevent hitting him. Heights also captivated him at one time, and we often found him standing on a second-story window ledge. Dealing with such frightening experiences daily left us exhausted and emotionally drained.

Looking back, we should have sought medical assistance much earlier; but it is difficult to see problems clearly when they develop slowly in a beautiful, seemingly “normal” little baby. He seemed like such a “happy” baby, never crying to be picked up. Later behavior problems were interpreted as an acute case of the “terrible twos,” the normal behavior of a developing two-year-old child. The slow speech was blamed on a premature birth and four older brothers and sisters who did all of Brian’s talking for him, while his inability to react socially with others was labeled an “independent streak” not uncommon in our family. We assumed that if we continued to love and care for him, he would somehow “grow out” of his problems.

Finally, when Brian turned three years old and the situation was still worsening, we sought medical help.

We went from expert to expert searching for a diagnosis. We heard Brain labeled “emotionally disturbed,” “abused,” and simply “a very unhappy little boy”—labels that were devastating to us because we loved and so desperately wanted to help our son. Other diagnoses of “mentally retarded,” “minimally brain damaged,” and “improperly developed nervous system,” were less shocking but no more helpful to us. Nothing seemed to fit, and no one had any specific suggestions for altering his behavior.

We had heard the term “autistic qualities” mentioned, so in desperation we attended a day-long autism workshop which we had read about in the newspaper. To our mingled relief and dismay, we agreed that Brian truly fit the characteristics and the symptoms of autism. We learned that autism is a lifelong developmental disability with 95 percent of its victims having to be placed in special care facilities. Our dreams of a mission and marriage for Brian suddenly disappeared as we realized the extremely limiting nature of this problem.

Even though this news was terribly discouraging, we were relieved to know at last the nature of his struggle. Feeling bewildered and alone in our situation, we took great comfort in meeting other parents of autistic children and sharing experiences with them. Their empathy and humor in examples of events similar to our own calmed our hurt spirits and made us realize we would not have to face this problem alone. Equally important, these parents offered us home care techniques, sources for written information, the names of doctors familiar with autism, and referrals to programs in the community designed to educate children like Brian.

Most significant, these parents made us feel better about ourselves. Once we met other parents of autistic children, we rapidly concluded that they were about as normal a group of individuals as we would find anywhere. These new friends, expressing their frustrations, fears and hopes, had feelings very similar to our own. Moreover, they seemed intelligent, compassionate, and levelheaded. This helped to remove any feelings of guilt that we had that we were somehow to blame for Brian’s condition.

We learned that there was no effective medical treatment for autism, but we were encouraged when we read of a certain kind of behavior therapy that had helped improve behavior in autistic children. However, we soon discovered that to enroll Brian in the only such program in the area would mean a wait of several years before he could start school.

In the meantime, my husband and I developed our own plan. We decided to provide a program at home until a placement in a school was possible. An understanding bishop gave me a prayerfully requested release as Relief Society president so my full energies could be focused on this challenge.

While persevering grandmothers babysat, I volunteered to work at the school for autistic children in order to gain some training as a therapist. Remodeling plans for our house halted, and money for new furniture was used to hire two therapists to work with Brian at home. The three of us worked in shifts, involving father and the other children where possible.

As Brian was taught the steps in paying attention, we were amazed at his progress and celebrated each little, hard-won success. This home approach was excellent for the immediate future because we were finally having positive interactions with Brian. However, in giving so much time and energy to Brian, we also realized that we must not neglect the other children.

Brian has now entered a school for autistic children, but our work with him at home is far from finished. Enthusiastic hopes have been replaced with more realistic thoughts of the future, and “flexibility” has become a motto. The class or techniques that work for him today may not be appropriate next month or next year. Undoubtedly, Brian will have extremely difficult teenage years, and he will never be “normal” like his brothers and sister. Nevertheless, he is developing his potential, and we all share the rewards of his progress.

I hardly claim to have all the answers on how to manage with a handicapped child. But after considering my own experiences, I might suggest a few things that one facing similar circumstances can do:

1. Accept reality. It is normal to go through a period of denying that a problem exists, and a period of sorry once the problem is recognized. But the sooner we dry our tears over the child who might have been and get on with the business of what to do about the child who is, the sooner some sense of balance will be restored to our lives. No one escapes this life without trials—ours are just a little more visible than some. Self-pity wastes valuable energy needed to help the child. We can prove again, as Jesus taught, that we truly find our lives when we lose them in the service of others.

2. Don’t feel guilty. Autism is a biological disorder and is not brought on by something the family may have done to the child. Likewise, having a child with any sort of handicap is not a punishment for transgression. Make sure other members of the family understand this.

3. Find a good educational program for your child. When he or she begins to progress, your whole outlook will change. Look for a structured setting where your child’s strengths and weaknesses will be assessed individually. A one-on-one behavioral treatment plan tailored to decrease negative behavior and build on strengths is essential. Once you’ve found this program, consistently follow through at home. Work in the classroom or visit often, if possible, so that you become part of the teaching team.

4. Join or organize a local parent group. Other parents and dedicated professionals are invaluable sources of information and moral support.

5. Be active in community efforts for autistic children (or those with other problems). Your leadership and organizational skills learned in church service will be welcomed in the community. You have the ability to make important contributions. Similarly, the work and friendship of nonmembers will bless your life.

6. Provide a positive learning experience for all family members. Family discussions can help family members understand their own feelings better and can help them develop empathy and compassion for others with difficult problems to face. Children can participate in a variety of treatment programs according to age and ability. Be careful to arrange quality time with your other children away from the autistic child so that they do not become resentful.

7. Take care of yourself. As the parent, you are the key to the family’s well-being. Make time to do something enjoyable and personally fulfilling. If you feel the need for professional counseling, get it. An autistic child puts significant stress on the marriage relationship, so pay close attention to what is happening between yourself and your spouse.

8. Keep grandparents informed and involved. They are concerned about both the child and his parents. They also can be a source of tremendous strength and comfort.

9. Discuss your child’s and your own special needs with the bishop. Talk about your situation with ward members so they can understand and be supportive. Unless you open the door, most will be afraid to do or say anything because they are afraid of doing the wrong thing. Give them a chance! A dedicated home teacher or special person to teach or tend your child can make a big difference to the entire family.

10. Trust in God. Though the experience of having such a challenge is something we might wish to avoid, it provides us with a situation in which trusting in God becomes a necessity. As we seek for divine assistance, the Spirit can provide comfort in the depths of discouragement, specific direction in time of dilemma, and increased capacity in the face of overwhelming responsibilities. We gain patience, serenity, and a perspective of life that might not have been acquired in any other way.

11. No matter what else you must sacrifice, hold on to your sense of humor! When your physical energy is totally used up, and your nerves are tense a sense of humor may be the only thing that can relieve the tension.

By observing Brian’s struggle, we have learned a great deal about ourselves. Indeed, we are all a little autistic or otherwise handicapped in our own ways, often ignoring the influence of the Spirit and wavering in our personal responses to the gospel. Just as it takes seemingly endless trials for Brian to learn new behavior that is more like ours, so it requires unceasing urging from the scriptures and our leaders to change our habits and make us more like the Savior. Our need for greater patience is often satisfied as we consider the infinite patience required by the Father to watch our painfully slow progress. It seems that we, too, are often “so near and yet so far.”

What Is Autism?

Autism is a severely incapacitating, lifelong developmental disability that usually appears during the first three years of life. It occurs in approximately 5 of every 10,000 births in its basic form. The occurrence is three times as common if a broader definition of autism is used. Autism is four times more common in males than females, and has been found throughout the world in families of all racial, ethnic, and social backgrounds.

What are the symptoms of autism?

• Slow development or lack of physical, social, and learning skills.

• Immature rhythms of speech, limited understanding of ideas, and use of words without attaching the usual meaning to them.

• Abnormal responses to sensations. Sight, hearing, touch, pain, balance, smell, taste, the way a child holds his body—any one or a combination of these responses may be affected.

• Abnormal ways of relating to people, objects and events.

• Many autistic children have distinct skills in music, mathematics, or in using spatial concepts (for example, working jigsaw puzzles), but are severely retarded in other areas.

How Church Leaders Can Help

At a recent conference in Salt Lake City of the U.S. National Society of Children and Adults with Autism, Elder Rex D. Pinegar counseled leaders and teachers on caring for the parents of an autistic child. Elder Pinegar of the First Quorum of the Seventy heads the Church’s Committee on Members with Special Needs.

A leader’s first concern, he said, should be for the parents’ shock at recognizing a problem long before the child recognizes his or her own condition. Secondly, parents should be reassured that they are not to blame for their child’s handicap.

“Parents need to understand,” he continued, “that they are not accountable for a condition with which their child is born—and that the child has every opportunity to attain eternal life that he possessed before he came to this earth.”

“The position of the Church,” said Elder Pinegar, “is that although children may be handicapped and may have difficulties, they are still children of our Heavenly Father, and they deserve every effort that we can make to help them realize whatever potential they have in life.”

Elder Pinegar reminded leaders and parents that ward and stake activities should be structured to include families with handicapped members regardless of the nature of the handicap. “If activity plans do not include handicapped members, then we are not reaching out to everybody. We’ve got to be willing to reach out and include them in our lives,” he added.

• Carmen B. Pingree, mother of seven, is president of the Utah Society for Autistic Children (Volunteer), and serves as Young Women president in her Salt Lake City ward.