Ministering on the Spectrum

My son with Autism wears shooting-range ear-protection for all three hours of church.

My son with Autism wears shooting-range ear-protection for all three hours of church.

There are nine Primary instruction manuals (yes, nine!) for teaching Primary lessons to children in the LDS church.

The Primary manuals are thick with ideas, support, scripture references, instructor guidelines and suggestions of age-appropriate activities. There are additional supports for teaching children found on the church websites— that support includes resources by topic, additional ideas for sharing time, and even short videos with weekly topics and tips.

While there are occasional blurbs at the end of a lesson about making accommodations for children with special needs, conspicuously missing are basic instructional guidelines and support for teaching children with learning, processing, or Autism Spectrum Disorders (ASD). This includes but is not limited to Autism, Asperger Syndrome, Pervasive Developmental Disorder, and Sensory Processing Disorder.

When a Primary Presidency and classroom instructor learn they have a student with an ASD developmental disability or Autism, if can be disconcerting. Managing a classroom of squirming kids for two hours each Sunday is no small task, and the idea of adding a child with special needs can feel overwhelming. There are frequently questions about disruption of others students, modeling of what is considered “reverent” or classroom-appropriate behavior, physical boundaries, and a myriad of other honest concerns and questions.

It’s important for instructors in the group environment during Sharing Time and in the smaller classes to be on the same page with understanding the individual child, and with a plan of how to manage the child’s needs, while still respecting the needs of the other children and rules of the classroom.

The starting place with this understanding always begins with the parent(s).

The first call a Primary Presidency should make is to ask the parent(s) to tell them about their child. The parent(s) will be able to easily and most accurately convey the strengths and the possible trouble areas for the child.

Frequently a child with Autism will function better when an individual is called to be their teacher in a one-on-one capacity, rather than as a group setting. This may not always be possible, but depending on the needs of the child and the resources of the ward, this can be a very successful starting point. If the child has one person with whom they feel comfortable and trust in a small classroom, they can often manage the louder, less structured Sharing Time lesson with less anxiety or disruption, and can be easily taken out, if the need arises.

The following are tips leaders and teachers may incorporate in the classroom and may discuss with the parents regarding how best to teach the child. Parents will be the best source of information on how these particular issues influence their child, and will be able help choose and incorporate which of these suggestions will be most helpful for their child.

  • Sitting in a chair for two hours with “reverent’ behavior is difficult for all children, but it borders on impossible for a child with ASD. While it’s important to respect others, having a separate space for the child with autism to sit can be successful. A small carpet square at the back of the room, a corner designated as ‘their’ spot, or sitting under a table in the back are accommodations that can allow the child to listen and be present without the stress, anxiety, stimulation and disruption of a front-row chair.
  • Teaching specific social rules such as turn-taking and acceptable social distance can be challenging. Touch and proximity can either be sought, or avoided aggressively.
  • Physical contact should always be initiated by the child. Hi-fives or even something as nice as a gentle hand on the shoulder to praise can be overwhelming. Touch and uninitiated physical contact can be challenging and stressful. Sitting in close proximity to other wiggly children coupled with a loud classroom or sharing time can raise anxiety and behavior issues.
  • Children with autism can have obsessive behaviors, or “stims”. These can include rocking, hiding, squeezing into tight places, humming, flapping of hands or feet, vocalizing, and other things. The use of weight blankets, belts or vests, ear protection, small therapy items to chew or wring in the hands can all help with stims. Allow for this in the classroom.
  • If you ask a question or give an instruction and are greeted with a blank stare, don’t take it personally. While manners and consideration for others should be part of the church environment, communication of emotion can be difficult for kids with ASD. The reading of social cues and facial expressions to infer direction is also often not comprehended. While a stern glance or long pause might correct a typical child, it will probably not be understood by a child with ASD.
  • ASD children tend to be very literal in their thinking. Try and keep your language simple and concrete. Inference and guessing can be frustrating.
  • Avoid using sarcasm. Even lightheartedly or jokingly- ASD children may not understand, and can take a silly “Great!” over a wrong answer to be literal.
  • Avoid using idioms. “Put your thinking caps on”, “Open your ears” and “Zipper your lips” can leave a child completely mystified and wondering how to do this directive, and can lead to frustration.
  • Give clear, closed choices: “Do you want to read or draw?” rather than asking, “What do you want to do now?”
  • Give very specific tasks in sequential order, which the child may follow. With a typical child, you can say, “Open your book” but to child with ASD, you might have to say, “Pick up your book. Put it on the table. Find page 1. Point to the picture of the ark.” The more specific, the more able the child is to follow the directive.
  • Structure and routine are very important, and if the child knows exactly what will happen each Sunday, (s)he will be far more successful. Drastic or even subtle changes in behavior often reflect anxiety. Anxiety can manifest is different ways, and is frequently due to stress about change in routine or instruction.
  • Provide advance warning of any impending change of routine, teacher, or switch of activity, if at all possible, even if just a phone call or email. The parents can let the child know at home what to expect on Sunday, with greater successful outcome.
  • Avoid overstimulation. Music time can be particularly difficult for some children with Autism, as can Sharing Time. Be prepared to make changes to the expectations. This might be a good time to take a walk around the building, or to plan on a separate activity in a quieter room.
  • Providing other children present with simple explanations of the needs of a child with a disability can help them understand why there might be different rules and expectations for others. It is a perfect opportunity to discuss the Gospel and how Heavenly Father makes each of us unique, and can be a chance for young children to be exposed to others of differing abilities.

Teaching children with ASD can be rewarding and tremendously enriching. These children will ceaselessly surprise you with what they learn and remember, even if that learning happens unconventionally or it seems they weren’t paying attention.

Suspending expectation of learning occurring in a particular, anticipated manner is key to successfully ministering to children with Autism and developmental disorders. (And probably the rest of us, too…)

Comments

  1. Tracy what a brilliant and thorough run-down of some easily implemented ways to be inclusive. My best girlfriend is the PP in my ward so I will share this with her.

    I can’t filter out background noise and so I have a tremendously hard time concentrating both at Church and in other places. I also frequently wear shooting-range noise cancellation headphones when I need to concentrate.

  2. Becky O. says:

    This is such a great guideline for children diagnosed with ASD and developmental disorders! Thank you! My concern is perhaps out of your realm of your expertise, but what do you do with a child that has never been diagnosed, but shows disruptive behavior? I think this is a touchy subject because the times I have been in this situation, the parents do not believe that their child is any different from any other child, whereas being 2 hours with this child among his/her peers, there is a marked difference between their behavior and others’ behavior. What would you suggest doing? Most laypeople would suggest touching the child (ie rubbing their back, holding their hand) to calm them down, but I noticed in your article that those with ASD could find that stressful. Any help/insight would be helpful! Thank you again for such a great article!

  3. Great post, Tracy. We have been fortunate in our ward, which has been very sensitive and supportive of our children from the beginning. We are also fortunate that our ward is large enough (and active enough) that there are enough adults serving in Primary and YW to provide adequate support for kids who need it. I’m imagining that it’s much more difficult for smaller wards with limited human resources to deal with individual children’s needs. It is most important to ask the parents about the child’s particular challenges and triggers and the most effective ways to respond. I thank God for the teachers who have served my kids so lovingly.

  4. KerBearRN says:

    Thank you so much for this, Tracy! This could apply to so many kids with different abilities, and even frequently to “regular” kids (especially those under stress with home/family situations). I think a lot more needs to go in to training primary teachers how not just to “present” a lesson (or give them ideas to kill time till the bell rings), but how to assess the needs of the kids in their particular class. Then we need to empower them to speak up and say, “we may need to make some changes”, and have it acted upon. Whether it’s smaller class sizes, more careful combinations of certain personalities mixed together, or bringing in extra hands, we need to make Primary for the kids and not the other way around.

  5. KerBearRN says:

    On a side note– I had the blessing of being the “special” teacher to a lovely 5-year-old Down Syndrome boy (within a larger class if about 6 kids) one summer when I was home from BYU. I was given no instructions or insights, other than to keep him from running amok. It was hard, being a 19 year old who had not been around little kids much, let alone one with special needs. I doubt I was really much help, but I did find that he would happily sit on my lap during lessons or singing time and engage a little better. And sometimes a walk was just the thing. And, well, sometimes i just gave in and we made paper airplanes. But of course, I was the one who gained the most. For years after that, he remembered me and would give me a huge grin when we crossed paths. I still carry a little bit of a shine because I got to be loved by a valiant spirit.

  6. I just love the picture of your sweet boy, it just about brings tears to my eyes. Having my own earnest boy who has to find ways to operate in a environments that are stressful and overwhelming to him, your sons sweet face really speaks to my heart.

  7. Thanks for this post, Tracy.

    Have you considered sending it (or an edited version of it) directly to the General Primary Presidency – or perhaps having a friend who lives in SLC hand-deliver it?

  8. This is actually just a distilled part of a larger piece I’m working on with regard to teaching children with disabilities in Primary.

    Thank you for the comments.

    Becky, to your specific question, this a common concern among Autism educators. Many parents resist the label, and there isn’t much you can do about it from their end. What you can do is to simply try some of these accommodations with the child and see if it helps him. If you have a positive result, you might invite the parents to see how its working, and then proceed from there.

  9. Angela C says:

    This is so important for teachers. I agree it needs to be more widely trained and published.

  10. Great stuff. Thanks, Tracy! (and I second Ray’s suggestion)

  11. This is exactly the kind of information I’ve been looking for as I’ve tried to figure out how to help Primary, YM, YW, and Sunday School teachers better engage with children on the spectrum. I always ask them to talk with the parents and I have tried to explore the question of how to help the child with parents but sometimes the answers seem like even the parents aren’t sure what to tell me. Thank you Tracy, please, please share the larger piece when you complete it. Even a draft would be helpful.

  12. Joseph M says:

    As a parent of an autistic child I am always glad to see more resources available to help people understand and interact with my son.
    I’ve noticed that there have been a lot of things regarding autism in Church publications recently.
    Here’s One from this Month http://www.lds.org/ensign/2013/07/teaching-the-one?lang=eng
    And one from January http://www.lds.org/ensign/2013/01/embracing-ethan-accepting-autism?lang=eng
    this one from August of last year has a huge list of othe articles dealing withAutism at teh end http://www.lds.org/ensign/2011/08/garrett-was-gods-child-first?lang=eng
    and it was mentioned twice in the Oct General confrencehttp://www.lds.org/general-conference/2012/10/one-step-closer-to-the-savior?lang=eng

    http://www.lds.org/general-conference/2012/10/first-observe-then-serve?lang=eng

    The disability resource page on autism could use some fleshing out but is a good starting place. http://www.lds.org/topics/disability/list/autism

  13. I admit that oftentimes teachers come to me for advice about my daughter, and I’ve got nothing. Sorry, kids, I’m as lost as you are! But I appreciate that they ask me. They just want to be sure that they’re doing what’s best for her.

  14. Thanks for the post Tracy.

    Your points might have been helpful to my wife and I over twenty years ago when our second son was diagnosed with autism (his older brother is Asperger’s and entailed different challenges). We discovered with various primary presidents and ward members ways to deal with my son, but the underlying principle I gathered over that time was to forget about the diagnosis and remember the Savior’s injunction to “Love your neighbor.”

    As our ward rose to the challenge of accepting our son it was based on loving him, not healing or understanding him. The payoff for the ward was the first time he blessed the Sacrament, in his standing/swaying way, I witnessed the most moist eyes I had ever seen during the passing of the Sacrament. A ward brother later relayed to my wife his theory that our son had brought the ward closer together. Indeed, love should always bring us together even when we receive those that we can’t understand.

  15. zarahemla says:

    I appreciate this article very much. My son has sensory problems and has long had problems in singing time. Luckily his teachers are kind folks who are willing to work with him and include him (and comfort him when he gets upset). I think an article like this would be really helpful to any presidency & music time leader.

  16. There are other resources to consider. http://www.ldsdisabilitieshelp.com has many informational posts and videos. There are also teaching strategies for those with disabilities in Primary, youth, and adult classes in my book, “(dis)Abilities and the Gospel”. You can also email me at ldparsons60@gmail.com if you have any other questions.

  17. As parent to differently abled chidlren (ours is Lyme disease enhanced neurotypical behavior, but it looks a lot like ASD) this article is MAGNIFICENT and should be In the stinkin’ manual. At least I have it to print and hand over to our sunbeam teacher, who has a longsuffering look each wee when my child leaves, as opposed to the quiet, soft, little four year olds otherwise in her care. Having my child ministered to is CRUCIAL to my enjoyment of church….or capability to minimize meltdowns. THANK YOU.

  18. steelblaidd says:

    I think there keeping this particular part of the Manual on line so that it can more easily be up dated.

    http://www.lds.org/topics/disability?lang=eng

  19. Antonio Parr says:

    Thank you for writing this. I will pass on to friends and family who work with Primary children.

    And God bless us, everyone.

  20. marginalizedmormon says:

    I don’t doubt that there are good-hearted, enlightened people “out there” who are willing and able to work with special needs children within the context of the primary (or YW/YM or beyond) program–

    but there are special needs that are rarely, if ever addressed, and it has been my experience that most of the time the parents end up bearing not only the burden of trying to teach/work with the child but also the labor of trying to erase ineffective or uncharitable efforts on the part of others–

    I have not seen the exception to that, and I have had a lot of experience with special needs, both in professional settings with children who are not ‘mine’ and with ‘my own’–

    When I see these kinds of things I just feel discouraged, because this kind of enlightenment and spirit-driven compassion, combined with good training and competence–

    is not something I have seen. Reading about it only makes me wish *we* had had it and that it could exist in *our* world now–

    but I hope for the best for all who truly care and for those children (and parents) who might get some help and love–

    while being very grateful for the hope that is in Jesus Christ for those who have not gotten it within the church structure–

  21. it's a series of tubes says:

    the labor of trying to erase ineffective or uncharitable efforts on the part of others

    Yes, this is indeed inevitable when electing to participate in an organization of fallen, fallible humans. Imperfections, shortcomings, and sharp elbows abound. All we can do is try our best to exercise Christlike charity and love to all, and hope that they do the same to us and ours in return.

  22. marginalizedmormon says:

    I felt that it was important to come back, in case there is someone else with special needs children for whom programs have not, for the most part, worked–

    There have been ministering angels (in our ward(s)) in our live and the lives of our special needs children–

    but these mortal angels have never worked from within any program that was designed at any given time to ‘serve’ our children. An early morning seminary teacher who did work with several of our older children (one of whom happened to be special needs and who was treated well by this teacher, though young people in the class were a continuing source of discouragement) reached out to us when we were struggling with a younger special needs child in a way that was particularly crucial at the time. Talk about sensitivity to the spirit and bearing of burdens of those who are weighted down. It wasn’t until that person moved out of the ward (we are still in friendly contact) that we found out that they had had special needs of a different kind with one of their children and could see the signs of struggling parents that others could not see.

    Still others reached out to one of our more ‘normal’ children during a time of crisis; there was no calling involvement at all; in fact it was a couple who reached out; the husband was involved with our male parent in a priesthood quorum, but there was compassion and understanding nonetheless–

    it wasn’t until later that we found out that they had had a child who had suffered at the hands of misunderstanding ward members (mostly youth) during a terrible crisis, so they, too, were able to see signs of distress. They continue to be close friends and very important to the child they loved and helped–

    To apologize on behalf of a vague collection (or organization) is not always realistic or helpful, though it is a reaction many have which is almost automatic–.

  23. marginalizedmormon says:

    and to the original blog essay writer–

    I hope you are heard. What you have written is intelligent and sensitive.

  24. Naismith says:

    Thanks for this. It is fascinating how every year brings a different crop of kids, each with their own challenges.

    One of the things I am doing this year with 9s is letting them lie on the floor or whatever they want while I tell them a story from church history. They have until the count of 10 to get comfy, and the only rule is that they can’t bother anyone else and need to maintain the position the entire time (so no head balancing).

    The advice about sarcasm, clear language, and avoiding idioms is sound for all kids that age. I also try to avoid humor, as it can go wrong. If kids laugh at whatever, fine. But I don’t aim for that.

  25. Thank you, Tracy. This is wonderful! I’m linking this post to our ward women’s/relief society facebook page. Primary folks post things there too, so it will get to the people who can use it. I’ll personally direct my friends in the primary presidency to this site as well.

  26. Although I think the post author would certainly agree with this, I think it’s also really important for parents of autistic and other disabled children to have realistic expectations and make a significant effort to help out teachers and leaders in extra ways. We have an autistic teenager in our troop prone to wandering at night and making comments about suicidal thoughts to the other youth while on camping trips. His father never comes on the camping trips. His parents have never provided significant guidance on how to address or control either, beyond, ‘he usually comes back’ and ‘he doesn’t mean it.’ Neither are particularly reassuring when in the moment, at midnight, in the woods.

  27. Dear General Primary Board: Please utilize the skills and abilities of Tracy and other educators/ mothers to teach us much needed practical information on how to best serve children in our primary on the spectrum. With our modern technology, board members shouldn’t have to live in UT. She could help fill the hole/crater that is missing in the current curriculum. Maybe then the Primary could truly be for all children in our wards. Thank you!

  28. I definitely agree with the first thing this article says “The starting place with this understanding always begins with the parent(s).”

    As for the rest of the article, it’s actually diametrically opposed to how I think we can best teach autistic kids to thrive in primary. And that’s a good thing! Different perspectives are so important when dealing with something as challenging as autism. What the article describes is definitely a very common approach for dealing with kids on the spectrum, which is to “change the environment to accommodate the child”. From what I have gathered since my son was diagnosed, this seems to be one of two different schools of thought when thinking about autism:

    1. Autistic kids have difficulty adapting to their environment, and therefore we should “change the environment to accommodate the child”
    2. Autistic kids have difficulty adapting to their environment, and therefore we should take extra care to “teach the child to adapt to the environment”

    In our family, we have tried #1 for years to no avail. The progress is halting at best, and most of the time we seem to always end up back where we started. The #2 approach has resulted in large improvements in behavior in a short amount of time, and even increased functioning when we didn’t allow our son to be so “accommodated” in the ways that he wanted. He seemed “level up” when he learned that his old ways didn’t get him what he wanted. Note that #2 still allows for SOME accommodations, but we try to make them temporary and gradually fade them away so he can quickly feel like he’s part of the group, and not be an outsider in primary. Here are some ways we have done that:

    1. First I would go to primary and sit next to him, then I began sitting behind him, then I faded out from coming to primary. Our specially-called primary workers will do the same eventually, although it might not be as quick.
    2. For a few weeks we let him leave primary after a few minutes to get a drink/take a walk with us, then come back, then take a break, etc. This has been gradually reduced and now when we ask him if he wants to go for a walk or stay he usually prefers to stay. (which is awesome!!)
    3. In sacrament, we have been bringing him just 10 min from the end, then 15, then 20 and will keep increasing the time until he is able to stay for the whole time happily.

    There may be some screaming fits that we have to ignore at first, and we may want to take slow steps but the goal is definitely to help him to be as independent as possible in the long run. At first he would have MAJOR outbursts in primary which we completely ignored, and now he has learned that those don’t get him what he wants and so he stopped doing them! Probably the most important thing we do is to give him a reward (praise, snack, etc.) when he is being reverent. We have to “catch him being good”! This has had a HUGE payoff. It’s like prayer. We all tend to pray when things are going bad, but not when things are going good. The same is true for rewarding kids, but we can see big benefits when we do a good job of rewarding ALL good behavior (even just sitting quietly is good behavior) and ignoring negative behaviors.

    My personal belief is that #2 sets kids up for long term success, as opposed to temporarily pacifying them with #1. It also keeps them engaged in the activities and teaches them skills that they wouldn’t learn if they were sitting in the corner. Having said that, we know that “every kid is different” and so that is why I think the most important point in that article is “The starting place with this understanding always begins with the parent(s).” You have to do what works for the individual family, regardless of personal preference.

    If the General Primary Board does add something like this to their literature I would hope it would give information for both schools of thought and emphasize that the family is best source for direction.

  29. Sean, fwiw, I don’t think anyone here would or does advocate only changing the environment. The issue is that too many times, the only approach from many people unfamiliar with the overall issues is to insist on changing the child as the only option – and that simply doesn’t work and actually is damaging for lots of kids (and adults) with various conditions. For many people, it is vitally important to change the environment in some way while they work on bring able to adapt as much as possible to the environment.

    It’s much the same issue as people who claim that medication for depression is bad and should not be used – that people just need to learn to cope with depression in productive ways and not take any medication. Such an approach is fine for some people, but for others it is terribly wrong and destructive. The best approach is to be open to what works in the immediate moment for each individual and strive to build as much independence as possible moving forward.

    In other words, it’s not best to pick one “school of thought”; it’s best to incorporate the best from all approaches, tailored to the needs of each person.

    Again, I don’t think anyone here who agrees with Tracy’s post would say differently.

  30. Sean’s comment is a good reminder that “if you know one autistic kid, you know one autistic kid.” Generalizing from solutions that work well for one child is usually unhelpful–being willing to understand the issues and work from a menu of possible solutions is essential.

  31. @Ray: totally agree that we should be open to different approaches. We have certainly made modifications to the environment when necessary, but always with the intention to fade them as needed. My main point was that nothing in the post talked about teaching children to adapt, it only mentioned ways of changing the environment so I want to make sure we don’t forget how much potential to learn these kids have. I know this isn’t really controversial to most reading this post, but many readers may be newcomers to the field of autism, or new primary teachers for example so they need to understand the balance between both #1 and #2 in my first post.

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