Whose Problem Is It Anyways?


There has been a media frenzy in the news this week about a severely autistic boy, “banned from the church”.

A restraining order has been issued to the parents of Adam Race because his behavior has become dangerous and unruly during church services at The Church of St. Joseph in Bertha, Minnesota.

According to the priest who filed the restraining order, the man-sized child at six feet tall and 225 pounds has physically injured other members of the congregation, spat on them and urinated in the pews.  He was able to bolt outside and start two vehicles (deadly weapons) and rev their engines while Sunday services were taking place. 

The mother’s response to her disabled son’s behavior is ”I cannot discipline him out of his autism.”  I agree and don’t think anyone is asking or expecting her to do that.

Apparently the church has offered many alternatives for these situations…using the cry room, video streams of the service into a private room and even mass at home for the family. 

The mother, according to reports, has taken an all or nothing approach, citing discrimination against her disabled son.  She either wants him to attend mass in the way every other member of the congregation does or try to correct what she sees as an injustice.

Hmmmm.

Although I have a great deal of heartfelt compassion for families affected with autistic children, I feel Adam’s parent’s may have lost sight of the bigger picture and have developed tunnel vision in trying to be their child’s advocate.

Now in no way do I claim to be an autism expert of any kind and again I feel nothing but empathy for this family but from over here in the cheap seats, I wonder about certain things.

Are Adam’s immediate abilities and needs being met or forgotten by putting him in a situation where he is expected to quietly sit still for an hour?

Is Adam really developing spiritual growth during this time?

Should a congregation be responsible for socializing a child at the risk of injuring others when even the parents are unable to control him?  (The parents have to sit on him to calm him down and use soft ties around his wrists and ankles.)

If this child was not autistic, would this even be an issue?  Would a non-autistic child be allowed to attend church and hurt others without question?

Do the autistic child’s rights outweigh the rights of others?

Is it a disservice putting Adam into situations causing him distress?

Do his parent’s recognize his overload triggers?

These questions filled my mind when I read about this very sad story.

Should parents with autistic children never leave their house and not develop relationships with others because of their child’s disability?  Absolutely not.  But there are limits to what each unique, autistic child can or cannot handle.  It is a parent’s job to recognize these limits and proceed with activities accordingly.

Should attending church be a pleasant experience for all or just one family seeking comfort?

Why frustrate this poor child to the point of his acting out for what he is faced with? 

Are there not many other opportunities to mainstream special needs kids?  Is mass one of those places?

One day Adam may be able to sit with minimal disruption in church, but between his adolescence and autism he is unable to demonstrate that possibility at this point in time.

I am lucky enough to be blessed with two healthy sons and cannot even imagine the struggles families face when trying to decide what their autistic child can successfully handle.  I can only imagine the heartbreak.

However, I will say I am ashamed at the so called advocacy group implying this is strictly a discrimination issue.  Are they really helping in taking that approach? 

In our society we do make accommodations for people with disabilities such as handicapped bathrooms, accessible entries and exits for those in wheelchairs and the use of Braille, to name just a few.  However, how do we accommodate a person with a disability which interferes with the welfare of the non-disabled?

How does everyone else feel about this?  Does anyone see this in a different way?  I myself am trying to come to terms with what is the right approach in a situation like this.

I hoped the church and the parents could have worked out a more amicable solution.  Both sides took their stance and now it seems there is no hope for Adam.

It is not clear in this news story if the family was offered help of any kind from the congregation.

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32 Comments

  1. Diane 1

    I’d find it hard to sit still in church – the same as I did 25 years ago when I was a child.
    I’ve got a nephew who has behavioural problems who I’d never consider inflicting church on. It wouldn’t be fair on either him or the other people at the church. If he ever felt he needed spiritual help and guidance then it’d have to be in a safe situation and at his request.
    I’m sure if this boy prays then his god will hear him wherever he is.

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  2. There are many ways that our church reaches parishioners who are unable to physically attend. I wish they could have reached the same conclusion before it spilled out for the whole country to watch. So sad for everyone.

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  3. What a sad, sad situation.

    I feel for the parents of this boy. I cannot even begin to imagine what their daily lives must be like with an autistic child of that size. I’m sure they are trying to live life as normally as they can under the circumstances.

    However, it does seem that this boy does not know his own strength or power, and could hurt himself or anyone else during the services at their church. He got out and started cars? What if he had actually been able to drive one of those cars? He could have caused a major accident and lives could have been lost. I know that sounds harsh, but it’s a fact.

    It’s sad that the parents and church could not come to a satisfactory solution to this problem and had to drag the media into it. I don’t see how this is going to be resolved when both sides seem so adamant in their ideas of what is right and wrong for this child.

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  4. This is so sad. And these are excellent questions. I don’t know what the answers are.

    But I *do* believe it is right to ask the questions. I believe children like this are everyone’s responsibility, not just one overwhelmed mother.

    If our society spent a little more time soul searching (as you are doing here), looking at things directly instead of demanding they be put out of sight, at the very least EXAMINING why we do the things we do, we’d all be better off.

    Ghandi said the measure of a civilization is how it treats its weakest members.

    It’s hard, though, especially when you can’t help but think of the safety of your own children first.

    Great post.

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  5. CJ :) 5

    I raised a severely manic depressive son.

    When he was a teenager he was unable to be mainstreamed in school. He was psychotic and violent – we basically went nowhere without Robert being heavily medicated, and even then I was on pins and needles the whole time.

    We generally only did things with the family.

    There was no way I would inflict Robert on the general public when he was unable to handle it.

    I suspect if my son was around this woman’s son she would insist I remove him. I wouldn’t blame her if she did.

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  6. I do sympathize with this family, but I have to wonder if the parents really have Adam’s best interests in mind. They are putting him in a situation in which he, at this time, is doomed to failure. That can’t be good for him. It seems to me that they are using their son to prove a point and to impose their views on others, and the advocacy group is doing the same. No one truly win in such a situation. My thought is that they should be ashamed–not for having a son with autism or advocating for the rights of the disabled, but for using a disabled person to push their point and get what they want. And I’m not even clear what it is they want.

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  7. I did a quick search and read a few of the articles about Adam Race. Now I’m not so sure. I guess it depends on which articles you read and who you believe about what has actually happened. If the situation is as bad as the priest says it is, Adam’s safety as well as that of the other parishioners is at risk and I stand by my original comment.

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  8. Jules 8

    It is a sad situation, but in some instances, you can’t mainstream disabled children. Do they have these same issues with him at home? If the church was willing to hold home mass for them, or even a separate room for the family, I think they should have taken them up on the offer.

    I was curious as to how old Adam was and discovered that he is only 13 years old. It is interesting to hear both sides of the issue. Here is an interview with Adam’s mother about the situation: link to huffingtonpost.com

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  9. Tipper 9

    I have all the same questions you do. I’ve saw the issue on the news-but didn’t hear them talk about the priests remarks you sited. Just another sad situation. I hope both sides come to an agreement.

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  10. krysta 10

    What a mess. It’s too bad the mom is taking a all or nothing approach. It never works. Most of the time autistic kids act out when they are not in comfortable and familiar situations. I can understand if she wants to get out of the house and do the same for her son, she has that right and so does he. But it seems to me he isn’t very comfortable in this situation and he needs to be slowly acclimatized. I’m sorry but that woman comes off very stubborn, more like she wants attention than caring about her son.

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  11. Medena 11

    That is sad, and it is sad that the family is dealing with the situation the way they are…

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  12. Shannon 12

    As a mother of 4, with 2 of my children being disabled, I have to say that I can, for the most part, understand both sides of the story. I do agree that the parents should have put Adam’s needs before that of themselves and found meaningful ways to integrate religion into their child’s life without putting others safety in jeopardy. However, on the other hand, I am appalled that a priest would “BAN” a family struggling with such issues, going as far as to get a restraining order on a mentally disabled child?!?! Surely, I would not want to put my faith into a church that would not offer meaningful alternatives and prayer for a family in such need!!

    I do believe that both sides are at fault. I remain neutral on my stance to this particular news story. I pray for Adam’s family and the church congregation as well.

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  13. The mother herself sounds out of control – as in she has no control over the situation and is not making any efforts to protect her son or others… SHE seems to be doing more harm to her son by putting him into situations that he can not handle… I mean, if it stresses him out, so the point of injuring himself or others, get a grip lady… Protect your poor child or, institutionalize him if you can’t handle him! Shame on her.
    And double shame on the so called advocacy group – Get real …
    As you can see this gets me all fired up!

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  14. Debra 14

    I agree that this story is heartbreaking. I feel the church offered many viable solutions. How sad for this young boy that his parents seem to have lost sight of the big picture of their son trying to get along with humanity.

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  15. Teri 15

    I’ve worked in an elementary school as an aide to an autistic child for a very short period, and I think sometimes parents mean well but can get caught up in fighting for the “rights” for their child instead of what’s right for their child… does that make sense? Parents of autistic childern have a lot to deal with (obvious statement), they deal with a lot more issues than a regular family can ever imagine on a daily basis, so I think it is easy for them to lose sight of what is really important. It sounds like Adam’s Mom needs to stand back and look at this situation from the congregations point of view as well as Adams. Just like a parent dealing with out-of-control teens or any other problem, there are therapy groups for the parents too. Sometimes those groups help us to see things in a different perspective. Maybe that is what this mother needs to help Adam and the people around him. It may give him a better quality of life. Wouldn’t anyone want that for their child no matter what their circumstance was?

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  16. I haven’t heard anything about Adam, but I’ve been in survival mode for a month now, so no surprise.

    After teaching SDC for several years and dealing with a llarge range of disability and parents, I have to say, I think I agree with your take on it. I think your question regarding Adam’s needs and abilities was particularly insightful. It must be so hard for his parents and I know the desire to give your child as normal an existence as possible must be overwhelming at times.

    When we were having Missy screened for autism (at her preschool teacher’s insistence) all I could think was I will be on the other side of IEPs now. I will have to be child’s advocate and fight for her. I have seen so many parents be thrust into that role by schools that don’t want to /can’t afford to provide services. By judgemental people who don’t understand the constant struggle these parents go through. By facilities that aren’t accesible.

    But there is a line. When does your advocacy start to impede your child’s progress? When do you lose sight of who your child is, in the vision of who you’d like them to be?

    Being the parent of a disabled child is so hard. My heart aches for this woman. But I think she’s wrong in this case.

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  17. Karly 17

    I am all for finding ways to make a disabled person’s life just as easy/normal as anyone else’s, but when it interferes with the safety of everyone else? Nope. In a way, I guess my line of thinking is that majority rules. The majority of that church is being put in danger and probably unable to focus on anything the preacher is preaching. Not to mention, is Adam really getting anything out of going? Probably not. I think its ridiculous that the preacher had to resort to a restraining order! The mother should have enough common sense to keep her son out of situations that cause him to act that way until he is better able to handle it. And if he can never handle it? Well, a blind person is never going to be able to see the Mona Lisa, but they don’t sue the Louvre do they?

    Hmm. I have stronger thoughts on all that than I thought. LOL. I’m sure a lot of people won’t agree with me. Thats okay.

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  18. Teri 18

    Side Note: I wasn’t saying Adam wasn’t an out-of-control teen, merely making reference to myself! My daughter can sometimes be a little unruly now and then, so I belong to an group to get suggestions now and then just to touch base before things get “out of control” My daughter and I have a wonderful relationship due to the help. It was a wonderful guide, they provide different perspectives that you may not always see.

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  19. Liz C. 19

    I see what you meant about both of us being on a rant today, lol.

    Here’s how I see this deal. She says she wants him to be able to attend church just like everybody else. But, that’s just the point, isn’t it? If he hurts people and urinates in the pews, then he is, in fact, not able to attend church like everyone else. Discrimination? Pffft!

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  20. Very well said, Cathy.

    You posed excellent questions here, ones that surely seem to answer that this boy is out of a comfort zone in church, and that it may not be the best situation for him.

    It’s unfortunate that some would rather take a hard stand at all costs than look at both sides of the issue.

    Great post.

    Reply
  21. Meredith 21

    If we allowed the majority to rule, then we would still have segregated schools in the South, Karly.

    The principles of our constitution protect minorities. In the case of the disabled, they are entitled by law to the least restrictive environment they can handle.

    I think lots of judgments are being made about what’s really going on with Adam without real facts. If the priest is accurately portraying him, then his parents should stop pushing him to participate in something that is too much for him. But, another possibility is that the priest is indeed exagerrating and mis-representing what’s going on.

    Adma’s mom says he’s behaved perfectly for the past two months in Mass, and that he has never been violent or spit. She says he is occassionally wet his pants, but so do 2-year olds and the elderly, why is it different for him? She says the car incident happened because the priest did not allow the family to leave the Church early as she requested and some idiot had left his car running and walked away from the car. So, I’m not so sure that this is as cut and dry as it seems.

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  22. It is so REFRESHING to listen to a person who can think and has some common sense. You are right. It sounds to me like mom is looking for a lawsuit for whatever reason. Man/child needs help and maybe some meds for his extreme behaviors. I would rather medicate than use physical restraints and force. It sounds terrible. I feel sorry for the man/child. mom is not coping well, church has done appropriate measures and the other people cannot be put at risk. The law is actually on the churches side, danger to self and danger to others is grounds for admission to mental facility. Her efforts would be far more effective in seeking help from the medical community and placing her son into situations where he could be comfortable instead of outraged. It’s tragic.

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  23. Chinyere, Sacramento, CA 23

    Adam’s mom should rethink her position and try looking at the situation from the outside in.

    Someone made a great point that if this child were not disabled, he would be banned/criticized without question. So why should the rules be so extremely different for Adam and his family?

    I have a four year old son who is busy and vibrant, but so loving and caring at the same time. Sometimes he invades people’s personal space in an act of love and kindness but people take offense because he is too close. He is capable of striking up a conversation with anyone about anything, and incapable of knowing when to stop. This melts my heart. But as cute as I think it is, I have to pull him away at times and explain to him that sometimes people don’t want to talk, give hugs or even play and be friends. I do this out of respect for others. It’s only common courtesy, and no matter the disability, Adam’s mom should consider doing the same, especially when people are being hurt.

    That being said, I have an incredible respect for parents (especially mothers) of disabled children. I am currently studying to be an interpreter of sign language and plain as day, discrimination against the deaf is alive and well.

    The church and Adam’s parents need to come to a resolution based on faith in God that all will work out.

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  24. If we take “church” out of the equation and make it Adam’s “school” or “work”, would this even be an issue? They have both schools and jobs for people with disabilities, why not have a church, too? I don’t think it’s unfair or discriminatory of the congregation to ask that Adam be separated on the sole basis that his behavior endangers other members of the church.

    Good coverage of a controversial issue.

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  25. Cathy,
    I’ve avoided weighing until now because I wanted to be sure that I had thought the matter through.
    I have no knowledge of this situation and am responding only to your post. As the mother of a high functioning autistic girl and from my tenure in the disability industry and my interaction with the individuals with disabilties that my agency serves two things come to mind.
    1. The doctor my daughter sees did the best job of giving me a frame of reference when she left elementary school and entered middle school and was having huge issues adapting to the change: “the thing you have to keep in mind is that K3’s world is smaller than your own. It’s vivid, it’s exciting, it’s compelling to her but it’s smaller. She will occasionally pull back from your world if it gets too big for her (or loud) She’ll always do well in smaller groups, smaller classes and one on one. The things that we have to give her now are coping skills so that she’s ready for the next time her world expands.” Smart guy. And I’ve lived by that. Because in this day and age. The word on the street is “inclusion” and number one: it doesn’t always work in favor of the individual with the disabiltiy… Sometimes they can be “over included” if the individual isn’t ready… number two: the trend now is to do away with “schools and jobs for people with disabilities”. Integration is practiced in schools (least restrictive environment) from Kindergarten on up and sheltered workshops are becoming smaller and closing around the nation because they are a form of segregation. (deep breath) I’m climbing down off my soap box for my second point.

    Discrimination in this situation would be if there were two Adams attending church and only one was asked to leave. It could be said that the church has offered solutions, but those solutions also fit the category of segregation in that Adam is not integrated into the full church body. Of course that’s an employment scenario, not a worship scenario.
    The other view would be what K3’s doctor told me regarding the size of the world. It would appear to me to be kinder all around for Adam to attend smaller, certainly shorter sessions where he could experience spiritual growth without the parameter that he sit still for an hour. I would not have to restrain her, but I doubt my 17 year old (K3) could sit so long quietly at something that didn’t fall into her interest categories.
    Ideally, the church could offer a special Wednesday night Adam service that was brief and invite the rest of the congregation to attend as well. It’s possible that those could evolve into him being able to do the full monte someday. Or it may be all he’s capable of.
    If I were Adam’s mother, I wouldn’t be waving the discrimination flag. Because along with having a child with disabilities come rights and responsibilities. The right to a free appropriate public education, yes. But also the responsibility to put the childs needs in perspective.

    K. I’m done.

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  26. The truth is so hard to find here. The mother says the priest has blown things way out of proportion. The priest says no that is the way things are.
    Where is the truth?
    I belong to a congregation that has a large number of mentally challenged and a few autistic children attending every Sunday.They have never been a problem. Last Sunday one of the mentally challenged pushed a girl with cerabal palsy down the aisle in her wheel chair to communion. After church I told her how nice it was of her to help her friend like that. She beemed.

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  27. Richard 27

    The thought that comes to my mind is in these litigious times the church has a very fine line to walk. If another parishoner is injured by Adam while in the church, then the church is almost guaranteed to be sued. In my humble the church in this case is “dammed if they do, dammed if they don’t.”

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  28. I’ve not heard of this story, until I read your post. I think you’ve asked good questions. My first thought was that the safety of others (including Adam) needs to be maintained, and if Adam isn’t capable of following the rules of a certain place, it’s probably not a good idea for him to be in that place (whether it’s school, the playground, the grocery store, the movies, or church). Is that fair? Probably not, but what if he gets hurt? What if he hurts others?

    For example, if my child decided to throw rocks at other kids at the playground, it’s my responsibility to remove her from the situation. Should she be allowed to play at the park? Absolutely, but only if she follows the rules and doesn’t hurt others. I would expect the same from the parents of any other child who happened to be doing something dangerous at the park. (Feel free to substitute “throwing rocks” and “at the park” with whatever scenario you choose.)

    I agree with a previous commenter who said that the discrimination issue fits only if 2-or-more children like Adam were treated differently.

    What a sad situation…

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  29. annbb 29

    Well thought out response that makes a lot of sense. I wish Adam’s mom could read it. Thank you, AG.

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  30. gizmar 30

    Well, you sure don’t shy away from loaded topics.
    I think the whole thing really does speak to a much larger picture of how society helps and deals with autism. The time to have helped Adam should have been years ago but the treatment is hugely expensive and has become so elitist in our society.
    You asked the question of whether Adam was being distressed – I do believe that those with autism have a much greater awareness of what’s happening but are trapped in a place of not being able to do anything about it. I suspect that if Adam could articulate more effectively, he would not even want to be in the church.

    What would you do if your “normal” child were creating a disruption? Is it discrimination to remove your child? We could have this debate until hell freezes over – the reality is we don’t do or know enough about this “puzzle disease” to effectively treat it and/or the fallout as a result. Aren’t you sorry you got me going on this?

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  31. Marcy 31

    Morning:)) Wow that is an interesting story. I agree that people don’t always treat disabled individuals the right way all the time. I have never been aroudn a child with that severe of autism, and can’t imagine it. Maybe the parents do know how to deal with im, but want the illusion of a normal family? That gives me alot to think about.
    thanks for opening our eyes.

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  32. Alisa 32

    I know I’m a day late (and a dollar short) but having worked in this field for years pre-kiddos, well, it’s completely unfair to expect people to bend to ones’ will simply because they are “handicapped”. Why would you ever put your own son in this position? They were offered multiple alternatives and it makes no sense to force a square peg into a round hole. Sometimes, every single one of us needs accomodations for something. I am so sick of hearing the cries of discrimination. It’s society and if people with “disabilities” don’t have to conform to basic societal morays, then why are the prisons full of people with schizophrenia and other mental issues? Because, bottom line, Autism is a mental handicap. Now, if this was about wheel chair access, I think they’d have a leg to stand on…after dealing with too many parents who refuse to help their child and hold them to unrealistic expectations (and some parents who were great), I have no sympathy. I see too many parents struggle to give their children a good life with the most independence possible to worry about those that want to find the easy way out and pass responsibility for their child’s behavior to others. What ever happened to responsibility?

    Reply

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