Why are we discriminating when the Lord doesn't? Is not the gospel to be preached and taught to everyone? The reason this question exists is partly because we still have members who think that autism is the parents' fault (see the comment about spanking in Sister Haff's letter as one expression of that belief). I, as a parent of three individuals with autism, have felt the discrimination, disdain, and abuse by other members that this grandmother and her family have experienced, and my children's level of autism isn't as severe. We're second class citizens in far too many people's eyes.
My children and every autistic or otherwise challenged child have every right to succeed and be recognized for that success as does any other child in the Church. This includes the Achievement Days, Scouting, YW Personal Progress, and Girls Camp programs.
Where is our faith that God will make of us what He needs us to be for the sake of those we shepherd, no matter what their challenges may be? Find the guiding principles, get on your knees for the help you need, move forward with full expectation that as you do your best, the answers will come, and do what needs to be done!
Question 2: What responsibility do we as ward members have for lending a hand outside of church to parents who are overwhelmed by one (or more) autistic children who need constant care even though our own plates are already full with our own daily challenges? As much responsibility as we have for lending a hand in acute cases!
There is no doctrine that says we are free of this responsibility after we take over 10 meals, or wash 20 loads of laundry, or reach out once in a while! The problem here is not that there is a high demand; it's that we lack the faith, the vision, and a solid understanding of the Plan of Salvation! We lack the ability to apply the gospel!
Are we filling our days with things that really do not build our eternity? Are we focusing our eyes too much on the ground and not enough on the heavens? The very real and immense blessings that you and your family will experience while you serve these families will go farther and do much more for your family than many of the activities with which you now fill your days. The "sacrifice" your question demands is simply the modern-day version of the kinds of sacrifice the pioneer Saints had, who rose up and met the challenge! I fear that the very fact this question exists is evidence that we will be condemned on Judgment Day.
Question 3: And how do you parents of autistic children survive from day to day? Every parent of a child with autism questions life itself at some point along the way.
We have to mourn the loss of the typical life we expected and dreamed of having, such as watching our children catch the winning touchdown pass, be the first chair in the school orchestra, have lots of good friends in the Church, be strong missionaries, marry in the temple, and so on. We have to forgive our bodies for passing along genes that were imperfect, our minds for not realizing that our children's immune systems were genetically not up to the onslaught of too many vaccinations in too little time, or whatever guilt or fault-finding we have.
We have to look past our children's behaviors into their spiritual selves, and stay focused on helping them to gain control of and (perhaps) mastery of bodies that present immense challenges challenges that we perhaps cannot comprehend and yet must somehow accept and help improve. Along the way, we give up any ideas of having a peaceful day or a chance to enjoy the company of friends in our own home or in theirs.
We have to acknowledge the immense challenges our children face, living in imperfect bodies as they do, and realize that they don't appreciate having those challenges any more than we appreciate having to deal with them. Moment to moment, they are doing the best they know how to do!
We have to become master planners and coordinators, quick to see the early signs of sensory overload that leads to disruptive behavior, and creative in our cooking to meet the dietary needs.
We have to build thick skins so that the insensitivities of others are categorized as such and not as assaults on our character, capabilities, or intelligence. We should take stock in paper product companies, because we'll individually and collectively keep facial tissue sales very high and feel guilty about all the trees we are killing so that we can have a well-deserved cry.
When our children have challenges such as autism, Down Syndrome, Rett's, Tourette's, OCD, ADHD, or any of a host of others, we quickly learn what's truly important in life, learn to rely upon the Savior, and find an inner strength that is often stretched, challenged, and runs thin, and that ultimately comes from God. In the process, there are moments of great spiritual value that are as unique as are our children, but which always helps us keep a firm grasp on the Plan of Salvation and our eyes looking toward heaven.
Along the way, we try hard not to be insulted by, frustrated with, or disdainful of those whose parental duties will never be so demanding. We take abuse from church workers who think they are listening to the Holy Spirit but who are ignoring our children's dietary or other needs out of some inappropriate and short-sighted belief system. (I can't tell you the number of times I've been told that I'm abusing my child because I won't let him have ice cream, a food that plays havoc with his gut and his brain. How short-sighted is that?)
We women are told that our perspectives and counsel are not welcome, all the while watching our sons be abused by Aaronic Priesthood-holding "young men" as their leaders consider such abuse "male character development activities." I have yet to read of such tactics by the Savior, have you?
Our children will never see life in the same way that neurotypical children do, and they will never receive the respect they deserve. My oldest with autism, who is now nearly 31 and is earning a 4.0 every semester in his dual-AA program (in English and Spanish! remember, autism has a language aspect), has spiritual insights that cut past the superficial social folkways that limit our understandings and bring forth truth. His younger brother, 10 years his junior, does the same, and was once acknowledged for his very spiritual devotional presentations in Seminary. Both have, all the while, been condemned for being so different.
As Simon Baren-Cohen (a leading autism researcher in Great Britain) is trying to get us to understand, we need to depathologize autism, because when you do you will find great insights, great knowledge, and great blessings. By golly, along the way, you'll find yourself less judgmental, with an expanded comprehension of the Plan of Salvation, and grateful to be humbled by them.
Now that my children are all grown, and I have but a few months before I finish my doctorate in clinical neuropsychology, I am stepping forward as an autism consultant, coach, and advocate. I invite stake presidents and bishops, stake and ward Relief Society and Primary presidencies, and anyone else who feels at a loss for what to do to meet the needs of individuals with challenges to contact me. Put my years of experience, my training, and my testimony to work!
Grace MacDowell-Boyer , MA , CNHP
Wolfeboro Branch
Concord New Hampshire Stake
Thanks for writing, Grace. I always know when I see your email address that you'll have something important to say.
The only part that made me a little uncomfortable was your response to question 2. I'm sure that there are people in every ward who are filling their days with unimportant activities or at least, with activities that seem unimportant to you and me. If that were not the case, Elder Oaks wouldn't have been inspired to give his Good, Better, Best .
However, I also believe that there are a whole lot of church members in every ward who are swimming as fast as they can in this world even without extraneous activities. The adversities of many ward members may not be as visible as the challenges to a parent with a handicapped child, but those trials can be just as overwhelming. In many cases, the spirit may be more than willing, but circumstances may make it impossible for ward members to do any more than offer a kind word or lend their prayers to help the situation.
And even those who are not overwhelmed with their own lives may not be helping for other reasons. Perhaps they are giving help to other ward members. In our ward I've been amazed at the different ways people serve. Some people feel a strong tug to help one family; others are inspired to help another. At least in our ward, the needs of everyone are met not by everyone in the ward, but by someone in the ward. Even the needs of families with autistic children.
That being said, I'm glad you've volunteered to lend your considerable expertise on the subject to ward leaders and others who need help. I hope lots of people take advantage of that expertise. It's free for the taking! Grace's email address, spelled out here to thwart spammers, is gmacdowellboyeratmacdotcom.
I read in a book by an autistic boy, Birger Sellin ( I Don't Want to be Inside Me Anymore ) that for him, it was that his senses picked up all sounds and all the sights way fast , and way loud , and too much all the time! It would be like Up close, Fast Forward of an IMAX surround movie on high volume but real , and he couldn't shut it off! It was really hard to figure out what was important input he was receiving and what wasn't.
This is also why limiting changes to what is absolutely necessary while keeping the same routines is so important for these kids. Can you see why "anger, spankings, threats and lectures" are such inappropriate choices?
I'm a sub teacher and former foster parent, plus mother of five. I have learned from experience (and study with the "Love and Logic" materials) that often the best thing is to watch if you can to prevent a meltdown by being prepared ahead of time, with alternative assignments/distracters
or comfort items and let them handle the situation if they can. It is best if the kids know the helps to calm down before they are upset it is sure a lot harder during a meltdown! Of course, if there is danger, intervene!
What usually works is the least possible talking, but actions and facial expressions of empathy and love. Also, offer them (best without any words!) a choice of calm-down methods. How about a super soft stuffed toy or an area where they can retreat from view of others, but where you can hear them maybe a corner of the room behind a draped sheet toy?
Jane Wadsworth
Oakley Idaho Second Ward
Thanks for sending the name of a book that helped you understand autism, Jane. I, too, have read a book about autism that really helped me. In fact, I just read it last week for the second time. This one is Mark Haddon's The Curious Incident of the Dog in the Night-Time . There are a couple of pretty raw words on the first page or two, I think, as a minor character discovers her dog stabbed with a garden fork. But I found the book invaluable for explaining in an easy-to-understand way why autistic people behave the way they do. Once I read it, a lot of things made sense.
Of course, it's no more accurate to generalize with autistic people than it is with anyone else. However, the author spent a lot of time working with autistic children, and his autistic protagonist rings true. Of the 1,411 reviews by Amazon customers last week, many were written by people with autism or Asperger's, and all the ones I read said the book was spot-on. It was ranked four stars.
The book is not for everyone, but if you want to get inside the mind of an autistic person, you may want to read the reviews and see if it's something that might be of interest to you.
Our ward has a family with two autistic children, one that is fairly well integrated with his peers (he has Asperger's Syndrome) and another boy, 8, with a much more severe form. The ward has worked with this family for several years now, having various people called (in teams of two) to assist with this child during Primary time. Recently, when one of these ward members was released, our bishop extended a special assignment for several additional assistants from the priesthood to take turns assisting the remaining called member on alternate weeks.
As one of those with this assignment, I can attest that the two hours can be challenging, especially not having formal training with autism (though we do get some guidance from the family). But I can also attest that it is a special opportunity to focus on "the one," and to know that needed service is being extended to this family and their child. It has also been wonderful to see the camaraderie that has developed with those who have taken part in this assignment over the years. Sometimes our "class" is visited by one or more from among this group and it's wonderful to witness the fellowship that exists. I'm grateful for our bishop in following the inspiration to involve several ward members to share this challenge. And grateful for this boy's family, who patiently work with us as they share their son's special challenges with us. I feel we are all blessed.
Kent O.
Chandler , Arizona
What a wonderful way to involve the ward, Kent ! Calling two regular helpers for each child can be of great benefit to the adults involved, as well as to the children. At the same time, it gives the parents a breather so they can attend their own classes. Thanks for sharing your bishop's compassionate solution with us.
This topic would be a great Fifth Sunday topic to explore.
I'm not sure what to do. Therefore I've not done anything, afraid that what I would do would not be helpful or would offend. Ward members need to know what would help the parents and what is clearly parents' responsibility.
Also missionaries dropping off nursery-age children need to give nursery workers a heads up when investigators have nursery-age children with special needs. Biting is just not acceptable in nursery and leaves one worker 1-to-1 walking the hallways and the other tending all the other nursery-age children when there should be two deep in leadership.
With investigators, our actions or lack of action speaks clearly. As a ward we need to be united in serving not only the families, but Heavenly Father's children with special needs.
Sister in Maine
I think you hit the nail on the head, Maine . Many of us see situations and want to help but don't do it because we don't know what to do. For example, a natural reaction in responding to a traumatized child would be to embrace that child. But if the child is autistic, that may be the worst thing you can do.
Ward members need education not just to help with autistic children, but to help with any ward members with special needs. When ward members don't help, we should not assume that people don't care. They could care very much but not act because they don't want to do the wrong thing.
Read on to hear from someone who echoes your Fifth Sunday idea:
Why not have an open discussion to a problem that has become public? Model it on an IEP (Individualized Education Program) special education meeting, where parents and leaders explore the issues and reasonable solutions. Then make a written agreement, with built-in review timetable for things that will need change, as to who does what so that all can have a reverent, learning, spiritual time with reasonable expectations for a difficult situation.
I see the purpose of going to church is to have ourselves and others filled with the Spirit as we learn of Him. It seems to me that everyone has different needs to be met in order to meet this goal. Disruptions in reverence block the Spirit. Furthermore, I don't see the ward leadership the only one responsible for every problem's cure, particularly one as long-term as this is.
Certainly caregivers of special needs people, including autistic, brain-damaged, and others whose needs disrupt reverence need an opportunity to refresh their own spiritual well. However those caregivers and special needs people are not the only ones who come to church to refresh and to learn of Him. Are the needs of a few far superior to the needs of many? Respect for everyone's needs, sharing others burdens and misery loves company seems like issues here.
A reader from Richmond , Virginia
You make good points, Richmond . We do need to respect everyone's needs, and the needs of the many can't be ignored. Even so, there are many parents of disabled children who desperately need help. Read on to see what happened to the family of another Virginia reader, whose needs were not handled in a sensitive manner:
Our daughter's family lives 150 miles from us so we are not able to help much with church attendance and daily difficulties. She has a 14-year-old son who has severe autism and a 13-year-old daughter who is normal. He is non-verbal, and prone to severe breakdowns, hair-pulling, biting, and so on.
Going to church was a nightmare. He responded only to his parents. He would have a meltdown very soon after entering the building. The ward's solution was to have them spend the time in a room away from the other members, where they could listen to the speakers over the PA system.
They stopped attending.
Their home teachers would drop in at bedtime unannounced, if at all, and totally disrupt the bedtime routine. They haven't been to church in many years but do have a few friends from church.
I am not sure what the ward needs to do. I just know that our daughter, who loved the Church as a youth, college student and young mother, now has no desire to attend church.
It would be nice if when members see a problem they could help, but often these children will not respond to anyone they are not close to. To be helpful, it would require members who would get close to the family and especially the child to be able to help. I would think a ward or perhaps several wards together in a building could form a support group to learn how to help the family and make church attendance possible.
There is no easy answer, but I feel that these children and their families are worth the effort.
A concerned Grandmother in Virginia
Thanks for writing, Virginia . Your letter underscores the desperation of parents of autistic children, who need the fellowship of ward members just as much as (and often, even more) than the rest of us. As you pointed out, there are no easy answers. I do hope, though, that this topic will heighten the awareness of ward members to the needs of autistic children and their entire families.
What worried me about the topic letter was the disappointment expressed about Primary workers and other local church leaders. Although you can take an occasional caustic comment from a stranger in Wal-Mart, it's much harder to cope with ward members who let you down.
I don't have autistic children, but I have been a Primary worker who was asked to deal with some interesting family situations, though autism was never one of them. Putting myself back in the place of those Primary workers, I realized that I don't really know very much about autism, and that I might feel insecure about how to deal with an autistic child. Having said that, I will also say that I would love to learn about it and be able to feel more confident in my ability to help an autistic child in my stewardship.
I know that the parents and grandparents in this situation are busy dealing with life, but it might be worth the time and effort to try and meet with the children's' Primary teachers and Primary presidency, and possibly even the bishop to explain the children's' needs. Explain what you expect of them and discuss what they should do if a situation gets out of their control. If the Primary workers are too busy with other children, maybe someone special could be called that could follow the children through their schedule and provide special support just for them.
My ward did that with a boy who had sustained brain damage because of chemotherapy at 4 years old, and things worked out pretty well. In the end, so many different people were asked to provide support throughout his youth that we all became natural support people for him.
When he became a deacon, we all felt very tenderly as we watched the YM leader (not his father) who followed the boy while he passed the sacrament, making sure that he was able to learn and safely perform these sacred duties. The whole ward exulted in his successes and we all felt it when our "little friend" was able to graduate from seminary.
I was his seminary teacher and it was great to see the other kids in the class help him with classwork and remind him about things he forgot. It was truly a blessing in my life to be able to help this boy and to watch others perform the same service.
I hope the parents and grandparents of autistic children will help us all learn more about how we can help because really most of us honestly want to. Give us the information we need and we will rise to the occasion!
Jackie in Gig Harbor
You make some good points, Jackie. First, people need to be told what is needed and what would cause more harm than good. Second, and even more important, the whole ward can be sensitized to the situation if it is done in a Christlike way. Other children can be amazingly sensitive and supportive (not all of them, but a lot of them) if the situation is explained in a way they can understand. If the whole ward adopts an autistic child and his family, that child's progress and achievements will be the progress and achievements of the whole ward. And as Grace said in our first letter today, everyone will be the better for it.
I have a grandson (one of 15 grandchildren) who has been diagnosed as autistic. He is 2. His parents have been released from other callings to serve in the nursery, where they oversee 14 children, including their son. I recently visited them and accompanied them to the nursery.
I know they want to watch over their little boy, but knowing what their life is like at home, it seemed pretty heartless to deny them the spiritual recharge they could be having from attendance to Priesthood and Relief Society meetings. They would not choose to be anywhere else, but I know that is because they know that no one will care for their child as they will. (He required much less attention than the majority of the other children.) Sacrifice brings forth the blessings of heaven, but it is reserved only for those who are willing to sacrifice for others. I see it here and there at church, but in the case of mentally handicapped children, perhaps not enough.
When I was a stake Primary president we were lucky enough to have a specialist in handicapped education who was called to implement a stake program for mentally handicapped children. They held their own separate meetings, and the children made amazing progress learning songs and learning to sit quietly in a meeting.
Even so, there were parents who complained that it was inconvenient to take their handicapped child to a different place or at a different time from their other children. Some didn't want to leave their children with others for fear there would be a meltdown or their child be unhappy.
There was one family who insisted on mainstreaming their autistic child, who was a constant problem in Primary classes over the years especially as he became more and more unmanageable. The parents eventually went from being mainstays in their ward to leaving the Church.
How people's children are treated is a very deep and emotional thing, especially for members of the Church who expect others to act in a truly Christian way. I found very different reactions to the handicapped program even in members of the stake presidency, as one had grown up with a sibling who was mainstreamed and felt that was a better way to handle the situation, giving the other children occasion to learn compassion for and patience with those who are different.
I recently read an article about a church (not LDS) that finally got a court injunction to prevent a family from bringing their 18-year-old autistic son to services because he was so disruptive, even to the extent of urinating in the chapel during services and jostling older members. They just didn't know what else to do, and apparently the parents didn't have the sense to make other arrangements for their child.
In my experience I find that parents with mentally handicapped children are very defensive about how their handicapped child is accepted by others, although they seldom if ever offer any information to others concerning what they need or expect. They just love that child so much and they are hurting.
We have a family in our ward who seldom brings their handicapped son to sacrament meeting. They have a family member stay with him at home during church meetings in order not to disrupt the service. When they do bring him and he is somewhat disruptive, everyone understands that they were unable to leave him at home and it is accepted. The parents are loving and patient with him, which causes softer feelings in others as they watch this dedication to a treasured child.
In this same ward I have also seen a high priest who was assigned to accompany a disruptive child who had some sort of mental handicap during the entire two hours of Primary. If the child got up and walked around, this patient man guided him to the hall and brought him back when he was able to sit still again. This continued for a couple of years, and now the child has progressed to a point that he can be a regular member of a class.
A branch in our building has an 18-year-old mentally handicapped young man who is unable to communicate verbally. He was allowed to wander alone through the building, using the copy machine to run hundreds of copies at one time and taking videos from the library where I was serving and running away with them. It took about a month of mentioning the problem to several leaders before they finally realized that letting this young man continue unaccompanied was unwise. Now he has someone assigned to be with him.
Each and every case seems to be different and requires a different way of dealing with it. Some families prefer to deal with their own children 24/7, and some long for some sort of help or break from the relenting demands on their mental, emotional and physical energy. Only though leaders getting to know each situation and need and listening to the guidance of the Spirit can everyone be cared for as the Savior would care for them if He were present.
In other words, there are no easy answers, but if we are to to bear one another's burdens as we are commanded, there shouldn't be anyone feeling alone or forgotten. Consequently, there cannot be anyone who isn't carrying any weight for others. Even in this day and age, there is still no time when we have done enough or have earned a rest, although that is what the world would have us expect and demand.
As I have often heard,The Church of Jesus Christ of Latter-day Saints is no church for sissies.
Librarian in Arizona
What a wise letter, Librarian. As you point out, there is no one answer that works in every situation. I would guess that even in a single family with two or more autistic children, every child may have different needs.
No parent of a handicapped child can just expect people to pitch in and help without first letting people know what help is needed. By the same token, we as ward members can certainly make the effort of going to those parents and asking exactly what we can do to help. I hope that some of the other 9,637 letters in my email box will give us some concrete suggestions.
Until next week Kathy
The secret of education is respecting the pupil.
Ralph Waldo Emerson
