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Magazine Features
Autism in Our Primary
by Wendy Green
Working with autistic children in a church setting, when you may not be trained in how to work with the disability, can be a great challenge. But with patience, the right attitude, and some essential tools, it can be a tremendous blessing.
"A new family is moving into our ward!" This statement always brought an air of joy and excitement to our small congregation. Our Primary wasn't very big, so the thought of more children and potential leadership help was pretty exciting.
During the next meeting, *Brother Johnson, an older member of our ward, shared information about the new family - his family. The husband, Chad, was Brother Johnson's son. Chad and his wife, Anne, had five children. The family was wonderful, Brother Johnson explained, but a few of the children had special needs. One boy was autistic and two other children had Asperger's syndrome. I wondered, what this would mean to our ward, to our Primary. Because our ward is very kind, I knew the next question most people would ask was, "What can we do to help?"
Brother Johnson asked for our patience and understanding as a ward. He explained that his son's family was amazing, though the children could be a challenge. What an understatement that turned out to be!
The Johnson family's first Sunday in sacrament meeting was rough. Their six-year-old son, Gavin, had the hardest time. He made a lot of loud noises, slapped his legs and yelled whenever his mother tried to correct him. His little sister and older brother also caused a commotion. The congregation tried to ignore the distractions, but it was difficult to disregard the loud outbursts from the back of the room.
Primary was worse. Gavin jumped from chair to chair and talked so loudly that whoever was speaking would have to stop until Gavin could be quieted. The older primary children tried to ignore his behavior while the younger ones kept asking why Gavin acted as he did.
The next Sunday, Anne took a few minutes during Sharing Time and explained autism to the children using terms they could easily understand. She talked about the different way Gavin's brain functioned compared to a regular person. Anne explained the noises he made and the leg slapping as the ways his brain made sure he was okay. This helped both the children and the teachers understand more about him. From that point on, the kids were much more accepting of Gavin and more tolerant of his behavior.
Some of the adults in our ward weren't as accepting. I learned that more than one person had complained about the children's disruptive behavior; one woman even said she might stop attending our ward.
My heart went out to Gavin's family. The family itself struggled, partly because Chad also had Asperger's and struggled with his roles as father and provider. I knew that the other auxiliaries were involved with helping the family, so I decided to focus my efforts on helping Gavin.
I was nervous about offering to help because I didn't know much about autism. But I was willing to learn. I approached our Primary President and said, "I'd be happy to sit with Gavin during Sharing Time." A look of relief swept over her face. From that point on, my unofficial calling was to be Gavin's friend, and I learned as much from it as I have from any other calling.
Be patient.
The first Sunday, Gavin wouldn't talk to me or look me in the eye. I had to corral him just like the secretary had before. I had to block the cabinet doors to prevent his climbing in them, and gently lift him off the chairs he jumped across every week.
I tried to keep my voice calm and offered positive statements like, "Let's keep our feet on the floor," and "Chairs are for sitting." I refrained from scolding him or telling him what not to do. After making the same statements in a calm voice, carefully setting him back in his seat, and modeling appropriate behavior, Gavin began improving and his outbursts lessened.
Keep it simple.
With my children, I often gave detailed instructions with accompanying explanations. I'd say things like, "Please don't climb on the furniture. It isn't polite, it makes the furniture dirty, and you could get hurt." I found Gavin responded better to simple gestures like shaking my head when he did something wrong or clucking my tongue to get his attention instead of repeating his name over and over. Also, using simple phrases like "feet down" to remind him not to kick chairs yielded a better result than lengthy requests.
Be genuine and specific with praise.
Children are perceptive and can tell when praise is patronizing. I made sure to praise Gavin when I noticed him trying to follow instructions. "Thank you for remembering to use a soft voice," brought a bigger smile than, "Thanks for being good."
Gavin was also a very talented artist and would draw amazingly realistic pictures for his age. A specific comment like, "Your dinosaur has super sharp teeth" showed I was really looking at his work more than statements like, "That's nice," or "Good job."
Create predictability.
We went through a ritual each Sunday. It started when I saw Gavin in primary; he would look me in the eye and say, "You're Wendy. You have green eyes." Then we would enjoy our time together drawing, whispering, and quietly playing with the stuff from my "church bag" in the back of the Primary room.
Gavin had favorite items that I was sure to bring in the bag every Sunday: farm sticker books, crayons, Legos, and Smarties. He'd take careful inventory of my bag each week to be certain nothing was missing. One Sunday I left a particular book he liked at home, and he threw a kicking fit on the floor. I learned quickly to maintain a consistent inventory.
Be consistent and reliable.
Along the same lines as creating predictability, make sure you yourself are consistent when working with special needs children. If I was late to Primary, Gavin's screams of, "Where's Wendy? I want Wendy!" would echo down the hall. I learned that to keep the peace, I really needed to be on time.
One Sunday, I went to a baby blessing at a different ward. I'd found a great substitute to be with Gavin and made sure she had "the bag." I shared a few of the tricks I'd learned to help Gavin manage his behavior. I thought as long as she knew the routine and had the all-important bag, Gavin would be fine.
I was wrong. Gavin threw so many fits that the primary president had to have his mother Anne come and take him.
Occasionally you may need to change the schedule, but make sure to account for the repercussions when you do. In my case, notifying Gavin's mother and Gavin himself and making arrangements more fitting to his needs might have ended better.
Love the spirit within.
Over the course of our time together, Gavin and I had become friends. I thought our key to success was the toys and candy I brought, but after the problems that resulted when I wasn't there, I learned my presence meant something.
The week after I missed primary, Gavin ran up to greet me. He climbed onto a chair so he could stand eye-level with me. He'd never touched me before, so I was surprised when he gently placed his hands on my cheeks. He looked me in the eyes and said softly, "You're Wendy. You have green eyes." This time, he added, "I missed you." Then he gave me a big hug - the first hug he ever gave me.
It also turned out to be the last hug we ever shared. Gavin's family situation had worsened, and the next week Anne unexpectedly took the children and moved.
It's been a few years since I've seen Gavin, and I still miss him. Working with him was a challenge, but it was also a tremendous blessing. He taught me patience. It was a different kind of patience than I'd learned from dealing with my own children, a more thorough patience discovered through kindness, compassion, effort, and understanding.
Several months after Gavin had moved, my six-year-old asked, "Do you miss Gavin?" I answered that I did. He asked, "Did you love Gavin?" I answered that I most certainly did. "I already knew that," he said before running off to play.
I'm glad my son knew how I felt about Gavin. I hope Gavin knew I loved him then, and I hope he still knows it now.
*Names have been changed.
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Veronica in USA
As a mother of an autistic child, I can tell you how hard it is when I get looks of disapproval from on-looking parents about my son's behavior. Teachers have had a hard time with him as well. I have had a few primary teachers that he connected with and behaved well for. Those teachers were worth their weight in gold. It affected my family in a very positive way when someone took the effort to love my son. And the thing is, as you seem to have found out, autistic children are very lovable. There is something so very special about them. I wish more people would take the time and effort to understand the way you have. Thank you for your efforts.
bree in pascagoula ms
I find this article very good. However, it is disappointing. At my ward i am told it is against the church policy to baptize an autistic child. My sons both have asperger. I find this unfair because he was excepted at our last ward and prepared for baptism. At this ward he is not allowed to take part in any activities.
maria in Pocatello
I am the Primary Helper for my 5 yr old grandson, Koren, who is autistic. I have had many callings in the church from R.S Pres to Young Womens leader and this is the best of the best. Dependability and loving attitude are the key. Know the child and fit their needs, not expecting them to be someone they are not. Who Koren is is a loving boy who just happens not to talk and has some different behaviors. The children and leaders in our Primary are great about understanding.
Tamra in Virginia
Our oldest son, now 23 has High functioning autism/Asperger syndrome and could relate to so much of your story. When my son was in primary autism wasn't quite as well known as it is now. We didn't always have the most understanding wards, but the wards that were understanding and loving meant the most to us. I would have to say, that if you have a child with special needs and the ward isn't loving to you and your family, than if possible change wards. I know we aren't supose to, that we are supose to go to our assigned ward, but with speical needs you have special needs and some wards are more able to be compassionate than others. To us it was more inportant that there were loving people in the ward, ones that didn't complain or say rude things or blame their children's bad behavior on my son for having special needs. We have been told that their children wouldn't be behaving badly if my son hadn't been there. Having a member send me a note telling me how much they appreciated my son's slow blessing of the sacrament, that for the first time she had really heard the blessing, meant so very much to us. It not only is a challenge raising a child with speical needs, but it is a challenge dealing with members of the church who are less than what a latter day saint should be too. Thank you for sharing. Always Love
LoriAnn in Clifton Idaho
I love the article about Autism in our Primary. I am a mother of a special needs child and have found primary to be escpecially difficult. Some people work better than other with children like my son, and stability, consistency, and caring are the key. If you have the opportunity to work with a child with special needs, don't be afraid, it will be a wonderful experience, one that will change your life for the better if you let it. Ask the parents for advice, don't get frustrated, and remember that they are children of God too.
Debrah in Rupert, Idaho
I so much enjoyed your article. I am a special needs teacher in a public school and autistic children are a favorite of mine (I have lots of favorites) Not only is your advice good, but others who teach regualr children would find your advice good for them also. For instance instead of saying good job, be specific so the child knows exactly what behavior is moving in the correct direction. Modeling the behavior you want it another good one. Peopel have special neurons called modeling nuerons. Babies have a lot of them. These neurons jopb is to learn from modeling. Everyone learns well that way and children especially. I laughed as you talked about the importance of keeping things the same. My first year of teaching I chnaged my bullitan boards monthly like any good teacher. Now I know better. The same boards have been up for years. I now use cloth instead of paper for a background and when I make a change we talk about it for a few days, then make the tiniest change, no more. Each year the children return to school, I have my students for 3-4 years, with the same comfortable boards that help anchor in a feeling ao safety, acceptance and love.
Charlene in Idaho
This was a great article and I think important as more children are being diagnosed with autism all the time. However, as a teacher of children with special needs I think it is important that we see them as children first. A better way to refer to them would be "children with autism" not "autistic children". They are more than their diagnosis.
RandyLynn in Pullman, WA
I am happy to see an article on autism in LDSLiving. Thank you. My son is now 21 years old, and autism is just one of his symptoms from brain-injury. The best comment I can make to help is to tell you that patient is learned, if one is willing. The parents can and will, usually, teach you all you need to learn to include their beloved children and adults with autism in Church settings. But it takes a great deal of time. Don't think that one experience with the person with autism is going to produce great results because that would be rare. Expect that it will take many, perhaps hundreds or thousands, of experiences to show one small result; and don't give up. If one gives up one is saying I can't do this, and/or, you are not worth my time or effort. Far too many brothers and sisters walk away from children with autism; the ones who stick around gain enormous spiritual gifts that will change their lives for the better. Lastly, please, please don't judge the person or their family. Instead replace judgment with a desire to learn how to include and assist. There is so little real help in the world for our children and adults with autism, please don't add to this group. With sincerity of heart, RandyLynn
Megan in New York
Thank you so much for this great article. As the mother of a son with autism, my heart was greatly touched! With 1 out of every 91 children being diagnosed with autism, this is becoming a more common issue. The suggestions were great and my family has truly been blessed by the kindness and love of ward members. All children should be welcomed and loved in Primary. I believe the Savior would want this.
Lynn in Pine River MN
I am a Primary Presidency councilor, I also have autistic grandchildren in the Primary with me... This is something I needed.. and so it touched me very much.. thanks We need more to help us handle all these special spirits in the right attitude and way..
krista in oregon
I am the mother of a child with Cerebral Palsy. Our ward has several kids with various disabilities. There are great people who try hard to help. I hope those who have put forth that effort to help know how much you are appreciated, even when the family maybe too stressed to say it.
Tracy in Michigan
Thank you for including this wonderful article about Autism. My husband has Asperger's and it is definitely a challenge for him, myself and our 5 year old son. It is even more so of a challenge when we try to attend Church as a family.
Clarissa in SLC, UT
My son is Aspberger's and while he is high functioning, it is a challenge even for our family to get through the block without him having a meltdown. I am so thankful for patient and kind primary teachers who love him and who don't get upset when he won't make eye contact or gets in a mood. Autistic children know right from wrong, I find it disheartening to find that some areas whon't baptize an autistic child. Others with mental disabilities are allowed to be baptized and attend the temple. The kids I know on the autism spectrum know right from wrong, they want to be members of this church and to follow the Savior. They need the Gift of the Holy Ghost as much as anyone. They may have a different skill set than others, but they need and want the ability to serve the Lord and feel that Holy Ghost. My son, who cannot tell what a person in front of him is feeling, can tell when the Holy Ghost touches his heart and it has been a valuable tool in helping him control his emotions and behavior. Sunday meetings can be really hard, but I find the more we keep to a routine, the greater our chance of making it through the meetings. It also helps to have teachers who know, it's not personal, it's Aspberger's.
Paul in Maryland
Thank you for writing this article. My wife and I are parents to identical twin boys who are now 14, one with Asperger syndrome. It is important for young parents know that they are not the only ones who experience the challenges with their children. We also have had our share of negative looks and comments, but they are few compared to the many in our wonderful ward who have been such a positive influence for our son. We have truly been blessed with wonderful Primary Presidencies and Primary workers, Bishops and Counselors as well as great Sunday School teachers who have truly blessed his and our lives. He is now in High School and has adapted to this big change extremely well. As many have commented, there is great hope. Be patient, be accomodating and always have faith that you are up to this trial that Heavenly Father has blessed you with. And always appreicate their very unique talents and traits.
Cori in Wyoming
Please double check with someone of higher authority about your child's baptism. When lived on the coast, our sealing was blocked because we had a commuter marriage (and therefore not a celestial marriage I guess). There are many misconceptions in that area that cause much suffering. Don't give up. We moved to a new area will be sealed in a few months!
Sally-Ann in Florida, USA
As a Primary President and mother to a 3-year-old that has just been diagnosed autism spectrum disorder - thank you for this wonderful article. I have despaired over the past year and this article reinforced what I have been trying to get put in place for my little boy.
Darcell in North Carolina
This story touched my heart. This Sister has a special heart and Spirit. It was great how she was able to help this little boy. I hope he knows how much he was loved by this Sister. I also hope that they will be able to see each other again.
April in NSL UT
We are a family with several children on the Autism Spectrum. We understand that some times it is tough...but prayer, perseverance, and love the ward body can embrace all of us. After all special kids are sent to teach us all how to be more like our Savior. Thanks!
Susan in Provo, Utah
We used the word disability in our home casually because we knew our daughter would hear it and we wanted her to become de-sensitised to it. A disability is something that makes it harder for us. Her brother, for instance, needed glasses. Without him he would be disabled. Some disabilities can be helped with medication. Then there are those disabilities of the heart. A few weeks ago, my daughter with Autism was relating some stories about kids making fun of her when she was in grade school to her home teacher. She said, "I have Autism, but they have Meanism" Now let me think a minute... which disability would I rather have?
Erin in aejmpack@earthlink.net
Primary is for all children. The Lord wants our little children in Church. We all have stories of members who said unkind things to us as we struggled with our little children in Church meetings. More rarely, we also have stories of the sister behind us who pulled a lace-up toy out of her bag and handed it to our struggling son to help out. It is right to be kind and patient with children - to teach to their level. If only Primary teacher training could emphasize the same points your article included to give teachers tools to help children with special needs feel the Spirit of the Lord in Primary. The Spirit's sweet confirmation is worth any sacrifice.
Gary in Colorado
Thank you for the article. We are parents of a child with aspergers syndrom. I was happy to see comments from other readers expressing their feelings about wards that they belonged to, and the positive treatment given to their loved ones. I wished that we belonged to a ward that could accomodate our child. Most of the time our child is isolated within the class room, or can be found by himself during sharing time. It is due large in part to the teachers inexperience or possibly lack of caring? I have personally witnessed our own Bishop yelling at our child. I feel that moving is inevitable at this point. You do what you have to do for the love you have for your children. We have to remind ourselves that the Lord's church is perfect, but it is the members that make it imperfect.
in Florida
I am the mother of 3 fantastic kids...2 of whom are are autistic. My autistic daughter is in Primary, my autistic son is in the Nursery - I can totally relate to this article and enjoyed it very much! It means so much to hear from someone with compassion towards autistic children. Too many people judge these children and their parents without really knowing anything about them or their challenges. I want to agree wholeheartedly with your advice...Be consistent! Prepare the child for any upcoming changes. Speak in short, direct sentences. Instead of constantly scolding, tell them what they SHOULD do. Don't expect them to be like everyone else. Love them for who they are. Thanks again!!
Wendy in Mesa, AZ
My name is also Wendy, and I was very moved by your wonderful story. I was touched by how patient, compassionate and loving you were to that special spirit and I'm sure you were heartbroken when his mother took the children and left. You can always keep him in your prayers...hopefully he will know that you will always be with him in spirit. It hurt me that there are some individuals who are unwilling to be compassionate and understanding regarding individuals with special needs--how some have complained with one even going so far as to refusing to come to the ward. That is very saddening but in the end they are only hurting themselves with their attitude. I admit that I was very afraid that I would be like that until my cousin was diagnosed with autism. After that, I managed to develop a huge understanding and have great patience and compassion towards them. I serve as the Primary pianist in my ward, and there is a child who is autistic but seems to be well-behaved if he sits by my piano when I'm playing. That really warms my heart, just as I'm sure your heart was warmed by how receptive Gavin was towards you. May God bless you for your patience, your understanding, your compassion and your loving nature. You are a shining example to many, especially me. Love always, Wendy B. from Mesa, AZ :)
Helen in Nebraska
It was good to see an article about autism in this space. I was called to our primary presidency just as we had 5 children enter our primary with autism. I was lucky, because I work with children with special needs through my job. I was able to have a teacher from our local school district, whose specialty was autism spectrum come to speak at a training for our teachers. The parents of the children were also very active in a local autism support group and brought information to the ward family to help us understand and support them. Young children usually are receiving services from the local school district at a very early age. The special education teachers can help with ideas to support the children. We learned to use picture schedules as one tool- all of our children used these in school and at home. I have since been released, and two of the families have since moved from the area, but our ward is still very successful in supporting our families with special needs children. All of the children, who have reached the age of 8, have been baptized. It did take one little girl some time since she was afraid to get her face wet,but she was so proud when she finally was successful and was baptized.
Bobbye in Hoover, Alabama
Bree our son is eight years old and has asperger's syndrome. He was baptized on his birthday this past summer. The question never arose about the option to not have him baptized. He also participates in his cub scout den and this past Sunday said a part in the Primary Program. You need to check with another priesthood authority that can look this up in the church handbook of instruction. My son would have been devestated if he could not have been baptized. He is a blessing to our family and he is loved by all in our ward. Just remember that much prayer and fasting can answer any questions and solve any problem.
Abigail in South Carolina
My husband and I are primary teachers and one of our kids has autism. I will say that when we first got the calling we had no idea what to expect but we have learned so much in the 2 years of our calling. Because we have bonded with him, we have moved up with him and the class each year. It definitely has not been easy but he has taught us so much about love and patience.
dave in Cali
My son has a person just like the woman in this posting who helps him through church... she wasnt called...she just spent the time to talk with him and he opened up to her. Some are called and others are chosen. what a blessing it is!!! It makes up for all of the "cant you control your child" looks.
Holly in Idaho
I really enjoyed reading this story. It was sent to me by a woman who I respect and love dearly. She was a young women's leader a few years ago. I am 19 years old, and home working in between sememsters at BYU-Idaho. I was called to be the Sunbeam and CTR 5 teacher. I have three "amigos" who are crazy little 4 year olds, a 4 yr. autistic boy and another little girl with some other health problems. My first Sunday alone with my Sunbeams was crazy and almost a disaster. My little autistic boy was terrified of me and would scream and cry for his mom. I couldnl't get him to settle down and he eventually found a corner to "hid" in during my lesson. It seemed like everyone knew what a struggle this young boy was going to be and I was suprised when some ladies in my ward said,"we're so sorry you got stuck with him" This comment made me angry and determined to show them what a good boy he could be. (I'm changing his name for my story) Steven couldn't talk or communicate with anyone execpt for making screaching noises or pointing at things. I found that if I had one of the Sunbeam's parents sit with my class during primary then I could sit with Steven. It has been three months now, and I will admit it's been kind of frustrating, but this last Sunday we had our Primary program, and I was SO PROUD of Steven when he went up with my other Sunbeams and said, using REAL words, his part in the program. I found by using toys and objects that he likes in class to teach a Short lesson, he is able to pay attention better. The BEST though was when Steven saw me down the hall near the Primary Room and ran from his mom to me and took my hand to go to Primary. Steven has made LEAPS and BOUNDS! I was and am usually pretty nervous and hesitant when I am around other's who have special needs. It is hard for me to be around them. I LOVE STEVEN SO MUCH! I look forward to Sunday and wonder all week what he will do that will suprise me. I go back to school in January, and I'm excited but I don't know what I will do without being with Steven for two hours every Sunday. The Lord truly has blessed me by putting Steven in my life, and for calling me to be a SunBeam teacher.
mark in Carmel, Indiana
Bree, it is definitely not against Church policy to baptize an individual with Asperger's syndrome. In my Ward we have five baptized members with Asperger's, all clearly with the perceptions necessary to distingush between right and wrong, and to repent of sins. The young men have learned to adminsiter the sacrament reverently and to our joy, one of our Asperger's young men recently completed a successful two year mission. Fortunately our Ward has many members who understand the challenges of Asperger's and work patiently with affected young men. While it is true that it is unnecessary to baptize individuals who are so mentally challenged as to be like little children, I'm not aware of any doctrine forbidding baptism! Please follow the advice of some of the other respondents and appeal to a higher Priesthood authority at the Stake or Regional level to work with you and your Bishop to properly resolve this issue.