In the discussion of autistic children, nobody has more authority than the parent of an autistic child. The second authority is that child's teacher. Today's mailbag is full of letters from readers in both situations. They can tell us from experience how to help autistic children at church.

Read on for what they have to say:

My name is Barb Call.  My husband is Wynn and we have two autistic children.  Kevin is the older of the two, and he is high functioning with Asperger's Syndrome.  His behaviors can be unreliable, to say the least, and he struggles to process social cues and develop normal relationships with others.  

Our younger child is Kyle, who is also high functioning, but is more of a true "autistic" in that he seeks to be by himself, fights against structure, and has limited verbal skills.  Both boys, as is the case with most autistic children, are extremely bright and are, actually savants in different areas of development.  But, socially, both boys need a great deal of help, and others at church do not view them as particularly bright or wonderful as we know them to be, but view them instead, as difficult, disruptive, and hard to deal with, which is also absolutely true. 

Both my husband and I have been actively engaged in helping our children learn the gospel from day one.  We have always been close by to help both our boys through Sunday School and Primary.  What parents of autistic children in the Church need to understand is that The Church of Jesus Christ of Latter-day Saints is a lay church.  The leaders and teachers in the Primary and Sunday School are not trained special needs care-givers. 

We have had trained caregivers in our home provided from the state, and in the school system, assisting and helping our boys from as early as they were diagnosed. But it is asking a lot to expect members of the Church to take on the responsibility of a difficult special needs child or two who the parents know will disrupt Primary or Sunday School and will need constant supervision. 

My husband and I have both been in the classroom with our special needs children, either teaching the classes ourselves, or assisting the teacher in the classroom during Primary or Sunday School throughout their years growing up in the Church. 

It never occurred to us to just drop our child off at Primary and expect the leaders and teachers to "deal with" our children.  It's not fair to the leaders and the rest of the Primary children. 

If the leaders act apathetic, it is because they don't have the first clue how to deal with your autistic child, and they already feel overwhelmed with the job they have just teaching all the other children, who have their own challenging behaviors in the normal range, like giggling, talking, pushing, wiggling, and otherwise acting like children in Primary.  These are enough for the teachers to handle, and a very difficult child can be a nightmare for a teacher just doing her best to handle the others.  

For any parent of a special needs child, especially a child with disruptive and violent behaviors, for the parents of that child to wish they could have the help they needed in the Primary, so they could go to their own classes, is not realistic, unless they bring a special needs provider or caregiver, like a one-on-one aide, with them to church to assist with their child during Primary and Sunday School. 

I have been with my special needs child, who no one will love or understand as I do, in Primary, and observed other special needs children who the parents just "dropped off" at the Primary so they could attend their classes.  The parents were encouraged by well-meaning Primary leaders to do this, but I can tell you, that every time this happened, our Primary experienced a shift in focus from the work of teaching the gospel to the "group," to the disruptive child.  The entire Primary became noisier, and the other children were less attentive as half the leaders spent the entire time sitting with, chasing, begging, holding down, following, entertaining, and, in every way they could think, trying to keep that special needs child calm. 

This "extra care" is not the job of the Primary leader or the teacher.  It is the job of the parent.  It is my opinion that this will never change, and it is an unrealistic hope of any parent of a special needs child to expect the teacher or Primary leaders to "deal with" their child, babysit him, or provide respite care so that parent can be somewhere else. 

We all need to do our part, but our part , as a parent is to do everything we can for our children to help them learn, grow, integrate, adjust, adapt and be happy.  With special needs children, the process is about a million times harder, but we know how wonderful and bright they are — it is why Heavenly Father sent them to us!  

We feel like the Lord is in charge and He has entrusted these special children to us because He knows we can do the job and bring them to a knowledge of the Savior.  We cannot see the whole picture, but what we do know, is that our children surprise us every day with what they are able to grasp and understand.  

I just believe that it is not fair to expect people who cannot possibly understand what it means to raise a special needs child, and who have no special training and no burning desire to do it, to expect them to look after disruptive special needs children for two hours every Sunday, just because they are good, Christlike leaders and should want to do it because it is their "job" or "calling."   

Barb Call

Barb, your letter was a real eye-opener. I had expected that parents of autistic children were unilaterally going to ask for more services for their children, and your letter did exactly the opposite.

I totally agree that nobody has more experience in taking care of your special needs children than you have, and I also agree that it's unfair to the rest of the Primary for a parent to just drop off a special needs child there and expect everyone else to take care of the situation. In a lay church such as ours, there just aren't trained professionals waiting to take care of an autistic child or children — and when a child with behavioral problems is put into a group of children who do not have similar challenges it may be a bad experience for the special needs child as well as for the rest of the class. That's not to say it can't be done — but I would imagine that success is the exception rather than the rule.

I can't tell you how much I admire you for taking the challenge of shepherding your children through Primary upon yourself. And I admire you even more because you don't complain about it, and because you obviously have the sense that this is your calling, and that you are best fitted to do it.

Is this always the answer? I don't know. In the case of children who are not violently disruptive, and whose parents believe they need a weekly break, I do believe that it may be possible to effect a compromise. I believe (and I could be totally wrong here because I've never had a child with or without autism, and I have never served in Primary) that in most wards, there is at least one adult who would be both willing and able to work one-on-one with a special needs child in church, and to spend the time with that child to develop the sense of trust that child needs in order to have a good teacher-pupil relationship.

If that is the case — and finding that person may not be easy! — both the parents of the autistic child and the child could benefit from having a little time to attend their own classes and interact with others.

It is absolutely true that nobody has been called to love your child the way you do, but I do believe that even people who didn't give birth to your child can grow to love him, and to see him the way you do — or through Christ's eyes. It may bless the life of that person, and the life of the child, to find a relationship with one another.  

Read on to see what one branch did to help the families of autistic children:

I feel for the writer of the letter, and am saddened to hear of the lack of support being given to the family/parents of the children.

Our branch has been nothing short of wonderful in its support of two different families with autistic children. I will tell you of some of the things it has done:

The branch has set up a Primary class specifically for the autistic child. There is one student (the child) and one teacher. At one time, the teacher was the branch president. At another time the teacher was the grandmother. Right now the teacher is the mother.

Currently the child comes to Primary sharing time (we do not split the Primary, so everyone attends class first, then comes to sharing time). He is 6-7 years of age. The Primary president discovered he liked to play with the colored magnets they used to put pictures up on the board, so she bought a set just for him.

During sharing time, he is initially escorted to his chair, and sits on it, but if he starts to wander around the room, he is allowed to wander, and play with his magnets. His grandmother is one of the other teachers, and she and the Primary presidency members who are not presenting sharing time keep a watch over him so he does not endanger himself, or leave the room.

The Primary presidency explained to all the other children that this child has a condition that makes it difficult for him to pay attention and sit quietly, and they just need to work harder at being reverent and paying attention and not pay attention to what he is doing. I have found that despite the distraction, all the Primary children are able to focus on sharing time and participate.

This child's mother has worked hard to enable this child to be as normal as possible, and through the support of the branch, I have noticed significant improvement in his behavior. I have also noticed that as she has tried dietary control (limiting suspected food allergens, and providing vitamin and mineral supplements) that his attention span has lengthened, and his ability to communicate verbally has significantly improved. Yesterday after church, when his mother told him to take his bag and walk out to the car, he did so without any problems.

Rather than sitting at the back of the church, this family sits at the front, on the second row. The front row is empty, and if the child decides to slide under a row and sit on the front, it is available. I believe this additional attention helps the child learn reverence (and his siblings are less apt to act out just because he does). Usually, there is someone sitting on the third row who will slip into the second row to help control wiggly siblings if the autistic child is having a particularly bad day. 

Finally, I have found in our branch the spirit that our Savior encouraged us to have — to be one. The members truly are part of my family, and of each other's family, and we all work together to help solve all our problems — not just the ones that are convenient, or immediate. For that I am immensely, and eternally, grateful.

Karen Morgan
New Castle Branch, Muncie Indiana Stake 

What a great branch, Karen! There are so many good things being done there that it's hard to single one out. I particularly like the idea of telling the other children that so-and-so has trouble being reverent because of a medical condition, and that they'll all have to work harder to pay attention in sharing time. Quite often (and I realize there can be spectacular exceptions) children are more capable of understanding and more willing to help than we ever give them credit for being.

I believe that the ward does have a responsibility toward parents and children with autism. I cannot imagine being a parent and watching my child go into a class where I felt the teacher didn't love him as much as the other children, was scared of him or just didn't want him there. I think we need to be sensitive to parents as well as the children. With a little bit of prayer and some work, I have learned that we can help our Savior to teach these wonderful spirits together.

Here is the experience that my husband and I had in Primary.

As a newly graduated teacher in the public sector, I was excited to be called to Primary. I knew that Heavenly Father was going to put my newly acquired degree to use in service for the Church. I was so ecstatic to be of service for the children of the gospel, especially those getting ready to be baptized!

A few months after I was called to teach a large class, I had my fourth child. At the same time, the Primary president asked if I thought that I would be too overwhelmed if we incorporated a little boy (whom I will call Jesse) who had autism into our class from the nursery. We have had our bumpy times, but here are some wonderful things that I have learned and some tips to help out if you are a parent or a teacher for autistic children in the gospel.

I hope that these will help you all in your endeavors to teach some of our most wonderful brothers and sisters.

A CTR Teacher in New Mexico

Thanks so much for writing, CTR! It really helps to hear from someone who has a teaching degree and who has also taught an autistic child in church. Your suggestions will help many teachers who find themselves with a calling such as yours.

Here is a letter from one teacher who believes your letter — and the letters of the rest of you who have been responding — are literally an answer to prayer:

We here in  Oklahoma have recently had a family with an autistic child move into our ward.  It has been a nightmare in nursery because when all 14 of our children are attending church, it is total havoc when our "special child" is there. 

We have spoken with our Primary president and she has gone to our bishop.  They are calling another worker whose main responsibility will be the care of our "special child."  (We will probably take turns each week so that it is not so difficult for one person, and the child will get to know that each of us cares for her.)  The parents are relatively new converts who need to attend their meetings. 

With love and care we can help this child and her family.  I have been praying for guidance because it was getting to the point that we dreaded going to nursery because of this child — then your article shows up.  How wonderful our Father is who listens to and answers prayers. 

I am anxious to read other replies to your article — especially since I have just been put in charge of the nursery.  She is one of the Lords special children who has been put in our care, and we will be guided by His loving hand in doing so.

Concerned Nursery leader from Oklahoma .

Thanks for writing, Concerned. I hope you're learning a lot from all these letters. I know I am!

Here is another letter from a parent of an autistic child:

I read Joney Haff's letter in Meridian Magazine.  I have a 14-year-old boy, Philip, who has high functioning autism.  He will never be able to function entirely on his own, and whenever I am not around he will almost certain not be able to attend church. 

My difficulty is that, being high functioning, bishops and other leaders don't know what to do with him.  It is arguable if Philip should even been baptised, because although he has sufficient understanding, he is unable to apply what he knows to his life.  However, baptised he was, so that left us with the later problem of should he be ordained to the Aaronic Priesthood? 

He was ordained, but again he can't function satisfactorily.  He did try passing the sacrament, but well-meaning members complimented him on his efforts and he became too embarrassed to cope with it all.  The social trauma was just too much for him. 

How he will ever be able to be advanced to the Melchizedek Priesthood, I shall never know, and yet if he isn't ordained an elder he is going to be deemed to have failed in his duty, by those who look at him on paper.  A mission will definitely be off the cards, and marriage almost certainly will be.  Even a career is in doubt.  An adulthood in sheltered accommodation seems the most likely thing, from where he is unlikely to be able to access church meetings.

A few members of our ward are excellent with Philip.  Others just ignore him.  One even tried to have him removed from our care, suggesting that if somehow he was uprooted from everything he knows, then that must be the best thing for him!  Overall, though, nobody really knows what to do with him.  So I just potter on in my own way, serving where I can, but never hesitating to step aside when I need to be a mother first and foremost.

My one bright spot in all of this is that our loving Heavenly Father has heard my prayers regarding our family being sealed together before Philip reaches the age when the only way to go to the temple is as a holder of the Melchizedek Priesthood.  My husband, a nonmember for the first 21 years of our marriage, has just been baptised and has every intention of taking us to the temple to be sealed. 

Whatever might happen to Philip in the future (and my hope is that the Saviour's atonement will enable to Philip to achieve a place in the Celestial Kingdom, despite, or because of his disability, the extent of which we cannot possibly judge in these terms), at least I know that he will finally be sealed to us before it is potentially too late.

Rebecca Taylor
England

Thanks so much for your letter, Rebecca. It illustrates to all of us the anguish that parents go through when they are given a child who needs lifelong care.

It seems obvious from your husband's timely conversion that the Lord loves and is looking out for your family. Even though you have no idea what the future will hold in Philip's earthly life, knowing that the Lord is looking after Philip should give you comfort that everything will work out in the end. My prayers are with you.

As a parent of a quasi-mainstreamed autistic boy (age 13), I totally emphasize with the letter you published in Meridian today from Joney Haff.

We had our own experience this weekend, escorting our son through his first temple baptism trip.

There are church resources available to help the Haffs and their young boys that they don't seem to know about.

Additionally I meet frequently with my son's priesthood, Scout and Sunday School teachers to personally provide them training until interact with my son and to encourage his participation in a mainstream environment.  I volunteer to assist / shadow in as many ways as possible.

Boy Scout activities provide wonderful real-world learning opportunities for special need kids when done right.

Bryce Hall
Oceanside, California

Thanks for letting us know about resources to help autistic children, Bryce. I had no idea these resources could help — and I'm betting many of our readers were also in the dark.

This is a topic that is very close to my heart. I have a 13-year-old autistic boy, and I live in California , the state with more daily diagnosed cases than any other. With 13 years of experience dealing with autism, autistic child at church and autistic child at school (another nightmare), I think I have some tips to share.

My ultimate message for you and every parent of autistic children is this: There is hope. Our son was diagnosed when he was 2. He was considered "severe," with all the behaviors and mannerisms typical of autism. We didn't have any clue or much knowledgeable help around to guide us what to do or what not to do (which is more important).

We went to public places and suffered the embarrassing "looks" of the people around who didn't appreciate our son's outbursts, yells or compulsive behaviors, and we were hurt by their comments. We left restaurants in the middle of our dinners, we left movies halfway, we left expensive amusement parks an hour after we got there, we limited our outings and changed some plans.

We left sacrament meetings in the middle, and we didn't attend our Sunday School, Priesthood and Relief Society for (I would say) years. And, of course, he didn't attend Primary either.

I found ways to cope with that situation. I would find a seat (on a couch on the hall or in the mother's lounge in the restroom) where I could turn on the microphone and listen to whatever meeting was on in that time. I taught lessons with my child hiding under my desk. My husband and I took turns holding callings, and we adapted.

I understood our Primary and their lack of confidence in offering a place and an accommodation for my child. They didn't know better. But the Lord is merciful, and time goes by very quickly.

One Primary president was concerned enough and by the age of 11, our son went to his first Primary class.

Autistic children can learn. It takes longer and you have to accept that their lives won't follow the standard order of milestones, but they do learn and change. There is a time for everything; now it's your time to be there and cover for all their needs. There will be a time when you can sit and enjoy a meeting, knowing that your children are in their classes being taught by their leaders.

Autistic children, the same as anybody with a special need, come to this world not just to a mother or a family. They also come to an extended family, to a Church unit and to a community. We, as parents, need to teach these circles how to deal with our children. We can ask for help and train others how to do it.

Most of the people around us, especially at church, are well intentioned and will be willing to help. Be patient, be strong and trust in the Lord, who is the Father of us all.

My son was baptized last December, when he was already 13. He received the priesthood and passes the sacrament on Sundays, but still won't go to some of his meetings and stays with me. I'm grateful for this progress and I hope that there is more progress for him in the future.

Talk to your bishop and to your Primary president. Lord bless you.

Carmiña West
Benicia , California

Thanks for your letter, Carmiña. I admire your optimistic attitude. Like you, I believe that all of us come to larger families than the ones within our own walls. All of us are interconnected, and all of us have been asked — no, commanded to love one another.

We have one more letter today, this one from the mother of another autistic boy:

My oldest son Zach, 6, is autistic.  He recently potty trained (at 5 ½), and the outbursts during church can be embarrassing and terrible. Previous wards we have been in didn't give any support.  We became virtually inactive because it was always a challenge to get up and go and suffer the three hours, only to come home after walking halls or sitting in a quiet corner — something easily done at home without the struggle, rude looks and impatient remarks.   

Sundays are always the hardest days.   Over the years we have tried countless things to try to get him to participate.  We have been fortunate now to have wonderful Primary leaders who have always tried their best to help out, even if it didn't work.

I have even sat down and explained my child to the Primary leaders and his teachers every year.  We give details of his personality and quirks and ideas of how to overcome them.  I invited our speech therapist to attend church with us to add more ideas for involving Zach in class.  We tried picture time sheets for the schedule and anything else we could think of.    

Even now his participation is limited.  He is somewhat verbal, with about 10 understandable words, and his favorite one is, ”NO!” 

Here are some ideas for things that have been working for us.

Don't worry about the other looks of parents or children.  We struggled at first, but now that we have counseled with the bishop, Primary president and ward members, we have found that most are accepting now that they understand. 

When we originally moved into the ward we gave a brief testimony during sacrament about our child and the blessing that he was to us.  This helped people understand that we are aware of his behaviors that may be distracting but that we were trying our best.  We found more and more people asking questions and willing to help out once they understood why. 

Misunderstanding and uneducated people have been the biggest problem with autism — not the actual disorder. We have made friends among the autistic community that have always been great resources for new ideas. 

We know that if there is a problem that the best place we can go to is the Lord.  We have faith that as long as we continue to take him to church, regardless if he participates or not, we have gotten him to the right place and he always has a better week because of it.   

We have been blessed to have his special spirit in our home.  We know that as we counsel with the Lord in all things not only will we be blessed in knowledge but Zachary will also be blessed through our actions.  I am lucky to have my boy and have learned a lot from him.  I thank my Heavenly Father for this experience daily, even if it is through gritted teeth occasionally. 

Greg and Jill Moore (family of 5)
Tucson, Arizona

Thanks so much for your firsthand experience and your specific suggestions. You have helped a lot of people today.

One thing that is apparent from all these letters is that there isn't a single formula that will help teachers teach all autistic children. Autistic children are just as individual in their personalities and in their symptoms as the rest of us. Teaching an autistic child — whether as a parent or in a church calling — is a matter of trial and error. It should also be a matter of diligent prayer.

We have plenty more letters next time on this subject. See you next week!

Until then — Kathy

"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away."

Henry David Thoreau