Excluded?: On Keeping the Faith
Exclusion of autistic individuals from public places has been under heavy discussion in the wake of a Minnesota priest filing a restraining order against the parents of an autistic 13-year-old, Adam Race. In a short essay at the start of the guide Autism and Faith: A Journey Into Community entitled “Open the Door,” Linda Walder Fiddle writes:
In 1993, when my son, Danny, was diagnosed with Pervasive Developmental Disorder (PDD) (that I later learned meant he was autistic), my first thought was not to run to my local synagogue for support………..
When I reflect back now I realize that the reason I did not look to my faith community for support was that I just couldn’t deal with the possibility of rejection. Quite frankly it was challenging enough to navigate the daily routines that required tremendous planning due to Danny’s unpredictable and frenetic behaviors and I did not feel at all that he could handle the requirements of religious worship. My defensiveness and protectiveness fueled the notion that if Danny would not be welcomed, the rest of the family would not be welcomed either. And so, our family never joined any faith community.
There were times, however, that I peered through the peephole of the door to my faith community but always my fears, real or imagined, kept me from opening it……..
I wonder if it is this fear of rejection, of being excluded, that too often leads parents of autistic children and autistic individuals, and individuals who are “different,” not to seek out communities and experiences that they still feel keenly drawn to. It is not simply that one’s child can’t do something (Little League, proms, Girl Scouts), but that it feels (I’m not saying that this is the case, but this is what it can feel like) as if a welcome mat had never been put out.
Here’s a slightly different case of exclusion: In Manteca, California, the therapy dog of 4-year-old Jayden Qualls, who also has autism, was not allowed on the schoolbus or at McFall Preschool, according to CBS news. It may be argued that the school is right to “exclude” the therapy dog, Houdini. The dog is said to help Jayden “with walking, staying alert and emotional outbursts,” according to Jayden’s mother—-Houdini helps Jayden to manage being in school better. Is excluding a therapy dog tantamount to excluding the autistic or disabled child who relies on him?
The answer depends on so many factors, not the least of which is what was it like for Jayden to be in school prior to having Houdini? From the discussion about Adam Race and the parish of St. Joseph’s in Bertha, Minnesota, I’ve been reminded about how tricky—-even perilous—it is to make generalizations about “situations,” about the needs, of autistic persons.
In regard to the Races’ case, I’m less concerned about who is right or wrong or who said what or did what or tried what than to move forward and think about how to best include autistic individuals in public settings, including religious houses of worship. I’ve been troubled to note the constant emphasis on Adam’s height and weight. I understand why people might be fearful of him and of his behaviors: My own son is taller, heavier, and stronger than me (and he just turned 11 years old). When he throws himself on the floor, I cannot pull him up. Therefore, I have long been learning about other, non-physical, non-violent ways to help him through tantrums, anxiety attacks, and the like. And I have also been learning about what these “behaviors” mean: Not simply that my son is “being bad” or “misbehaving,” but that he is trying to tell me something that needs to get said.
Charlie and a lot of autistic children are very attuned to non-verbal communication, including tone of voice, body language, and gestures. Charlie knows when someone is afraid that he’ll “do something. At these times, his teachers and therapists know they have to speak to him with a kind of calm and steady confidence that he’ll be all right. We have been extremely hesitant to leave Charlie with any but a few babysitters and only in settings where the staff is highly trained for these reasons.
I guess you could say it is a kind of spiritual discipline and I have not always maintained it in the heat of the moment. I know little about faith, but the belief that Charlie can get through a tough moment, that we can get through it with him, that Charlie can do it (walk, talk, ride a bike, say his name, get on a surfboard, play piano with both hands)—–it is this belief at these moments in which I feel how human and limited I am, that I experience something that is “faith” (or maybe not). And seeing Charlie’s feet move the pedals even as his eyes blink in surprise, or seeing his teacher and an aide smile in proud delight when he reads the sheet music as he plucks the cello strings—-I think this might be what is called grace.
Think I’ll just call it Charlie.
Tags: adam race, asd, asperger, autism, autism blog, California, catholic, developmental disability, dog, Family, father, mothering blog, New Jersey, parent, parenting blog, pdd-nos, ReligionRelated Stories
POSTED IN: Animals, Disability Rights, Education, Religion
28 opinions for Excluded?: On Keeping the Faith
Mrs. C
May 21, 2008 at 6:30 am
I’ve had trouble with churches in the past, mostly because people don’t realize how hurtful they are being. If you bring it up, YOU are the discontented one with the problem, etc.
The place I’m going to now isn’t perfect, but I will say the staff is really trying. They just don’t *think* about things like changing the entire children’s church ministry rooms around, combining classes AND painting the walls all in one week without letting us know until we arrive at the door. They don’t mean anything by it; they’re thinking that they have x volunteers over the summer and how are they going to work it with the kids?
I think the sweetest thing was that the pastor apologized after Elf blew up in that situation. He said that they WANT Elf included and in retrospect they should have thought about the moves and what it meant.
I think we’re working things out, but you really can’t do that if the staff isn’t ready to TRY. I’m very sad for those families because they are just the folks that need the support and love the most.
Sara
May 21, 2008 at 6:41 am
Just to let your readers know . . . the Autism Society of Connecticut has created an Autism Orientation Workshop for Faith Communities where we talk about what autism is and how faith communities can create ministries around autism (and other disabilities) and be more inclusive. Presented from an interfaith perspective, it is about how to teach and live with ASD not the what of spriritual, liturgical or religious teaching. We’ll be presenting it again at the national conference of ASA in Orlando, FL.
mayfly
May 21, 2008 at 9:06 am
When my daughter was small she on rare occasions would attack other children, and predominately those still in strollers. When they showed up at a park, we tended to leave. Self-exclusion.
In Cupertino, we took her to a program where high schoolers earned their community service credits by working with autistic children. We pulled our daughter out of the program after she scratched someone, and because the children did not have the training to deal with her. The scratching was minor. But we felt even before that, the organizers wanted her out because she was low-functioning. This was a mixture of self and forced exclusion
In Cupertino, she attended a class supposedly for low-functioning children from which twice a week we’d get calls to come and pick her up because she had scratched or bitten an aide.
We were told no one wants to work with your daughter.
Before her next scheduled IEP at the time they took us to programs where they put children that have been forsaken by the educational system. These programs the children are unsupervised and tend to just wander around the class with the aides tending to biological needs and trying to calm individuals who have erupted in the chaos.
We could either fight to keep our daughter where she was, put in her a classroom such as the one described above, or move.
We decided it was not going to help our daughter to be someplace she was not wanted. We accepted the exclusion. We did not accept the other classroom was the right place for her, thought people told us it was, and so we moved to San Ramon.
The best thing we’ve ever done. Our daughter has never been sent home from school since.
We tried to attend a church in Saratoga, they did not force us out. They just had no programs for autistic children. We tried taking her to Sunday School classes for the very young. My wife and I would spend all our time keeping her from eating the craft supplies or breaking another child’s craft, or a teacher’s visual aid. Never once did she attack another child. She was far too restless to be in the service. We again excluded ourselves.
Moving to San Ramon also allowed us to discover a church with programs for children like ours.
We now have a happy child, the school tells us how happy they are to have her,
a loving church and a much stronger faith.
In a way the above came out of accepting previous exclusions.
Thomas
May 21, 2008 at 10:47 am
As a practicing Roman Catholic I am saddened and appalled that a part of the faith I’ve called home all my life would do something like this. I will say that the church I attend in Missoula MT is nothing like this - the pastor and the staff (even the volunteers at Sunday School) have be more than accomodating. So I guess my point with this is that I hope don’t judge the Catholic Church on the basis of this one incident.
My other concern in this case is how the parent’s handled their child. I too am not a proponent of physical restraints and I do believe that the parents could and should do something other than restrain him with straps.
I am probably more on the side of self-exclusion. If my daughter acted up in church I would be more likely to remove her.
Another Voice
May 21, 2008 at 10:56 am
What a disappointing article. It clearly shows how little is known about autism and interacting with autistic people. In fact it demonstrates a desire not to learn or to interact. Once two parties get down to filing court papers things are pretty much hopeless.
Autism awareness month has come and gone. A great amount of effort has gone into debating the causes and cures by people not qualified to research either of these. Very little was published about how to make this a better place for autistic people. The average person does not know what to do or how to react, they need help to figure this out.
I would like to see a time arrive that when a parent tells someone that their child has autism the response of “oh, I am so sorry” is replaced with “and what is his name”.
VAB
May 21, 2008 at 11:40 am
The Nominalist raises an interesting question on his blog. He asks how you balance the need for accommodation of a hypothetical congregation member with anxiety disorder with the need for accommodation by the boy in question. My son, for instance, would not be able to be in a place where someone was making sudden movements or loud noises.
What I really find missing from this whole discussion, however, is the desires of the boy in question. If he’s being disruptive, it may be because he is bored out of his tree in church (like most 13 year olds). Or he might not like the smell of incense or the sound of organ music. If he likes church, and really wants to go, then you can look at ways of working with him to make it a success. If he doesn’t like church, then true accommodation might mean things like less time inside, so it doesn’t become overwhelming for him.
Kristina Chew, PhD
May 21, 2008 at 11:48 am
@VAB, I agree — it’s been so many assumptions about what Adam Race might himself want that has been quite overlooked.
HQ Yeo
May 21, 2008 at 12:33 pm
Dear all,
I am from Singapore and we are using neurofeedback to treat autistic children, with a great deal of success as defined by the parents of these children.
Firstly I have to declare that I have a vested interest in neurofeedback in that I am the business development officer for BEC. However I am not here to promote my company to you.
What I want to really do here is to ask you to do research into Neurofeedback and its effectiveness for autistic children and then consult the US practitioners. What puzzled me when I was doing research is the lack of knowledge of usage of neurofeedback for autistic children when this treatment method originated from the US! And almost all the practitioners in the world right now are residing in the US or Canada. So please do some research and check it out.
Also if anyone of you can, do contact Ernie Els, the golfer. His son is autistic and he has gone public that he wants to put in money for treatment methods on autism. I see tremendous value in his support to advance research on autism.
Wishing you all the best.
Yeo
HQ Yeo
May 21, 2008 at 12:47 pm
Dear all,
I wrote a comment earlier but it was not displayed. Perhaps I clicked the wrong button.
Anyway, I like to request that you google on “Neurofeedback” with “Autism” and do some research.
At this juncture I have to declare that I have a vested interest in this. My company uses this approach to treat autistic children with a high degree of success, as defined by the parents. However I am not here to market my company or what we do.
What I really want to do is to inform you of the existence of this treatment method, that we are using it very successfully in our treatment of children with autism, and finally I want you to read up and check with the practitioners in the US/Canada. This treatment system originated from the US and practically all the practitioners in the world are in the US/Canada region.
While doing my research to grow the business of this company, I was puzzled as to the lack of interest for this method on autism in the US. Maybe your laws are different. But surely you want to know whatever methods are available so that you can make informed choices. Hence I am leaving my comments here.
One more thing - if someone can contact Mr Ernie Els, the golfer. His son is autistic. He has gone public to say that he will support (financially) research on treatment. I am thinking that it is good to have him support this research. So please contact him and let his money do some good as well.
Wishing you all the best.
Yeo
Kristina Chew, PhD
May 21, 2008 at 1:15 pm
@Yeo, thank you for your comments—I have received your email and will be responding soon. Here is a previous post on Ernie Els. Very best.
R.G.
May 21, 2008 at 1:41 pm
When I was younger I went to church frequently sometimes with my son sometimes without. After it was kindly pointed out to me several times that my son was a bit of a disruption in both Sunday school and church services I became more then disenchanted with the church. My explanations that my son had special needs and had a hard time attending seem to fall on deaf ears. The last service I went to the pastor spoke about sparing the rod and spoiling the child. That was enough. We haven’t been to church services since but I pray often and I teach my son about God.
Kristina Chew, PhD
May 21, 2008 at 1:48 pm
Painful…… getting the world change is no easy task. Very best to your son and your family.
Including Samuel: Tonight
May 21, 2008 at 2:00 pm
[…] about exclusion—–tonight at 5.30 pm and at 8.00pm at the JCC in Manhattan, a film called Including […]
Bonnie Sayers
May 21, 2008 at 3:38 pm
I agree 100% with the comment by another voice. Hopefully that will happen in our lifetime.
Morgan
May 21, 2008 at 4:08 pm
” . . . I have long been learning about other, non-physical, non-violent ways to help him through tantrums, anxiety attacks, and the like.”
That’s something we could all benefit from learning — and not just in this context.
It’s Ok to be Disabled Until—-
May 22, 2008 at 1:20 am
[…] been a lot of discussion here about exclusion after a Minnesota priest filed a restraining order against the parents of 13-year-old Adam Race. […]
Mom of 7
May 22, 2008 at 12:53 pm
I was asked to comment on the other articles by email.
I am a “person of faith”. In general if there were not services where my disabled child could function without interruption or making the whole focus of those leading the sunday school class about preventing my child from being distressed I wouldn’t have him attend.
Group activities can often have minor changes that allow a disabled person to function as a regular member. I guess it would be in my mind how much of the leader’s focus and the other attendees focus had to be put into making the situation productive for my child and if that was unfairly taking away from the focus on the entire group. My child isn’t the only attendee with needs, everyone brings their needs to the table-I can’t allow my needs to become more important than the rest of society.
About being a parent of a child with special needs it’s a balancing act between wanting my child to be able to participate in activities of daily life with everyone else and respecting the needs of others to participate without my child totally “stealing the show”.
Hard questions all around, does one child’s need for structure neccessarily negate the rights of other children to be spontaneous and creative?
My love for my child and desire for him to participate doesn’t always mean that he is able.
Just like I expect my non disabled children to develope self discipline when a disabled child can’t have self discipline then his parents must excercise theirs.
We are the parents, in all situations that affect our children we do the research to know their limits, their triggers, their gifts. It’s HARD to know what to share with those we are dealing with.
To the parents of an autistic child the painting of a room/rearrangement of a room needs to be dealt with as a challenge before introduction with the group, but in the day to day life and it’s many obligations we may not think to say-by the way if you move furniture or paint-let me know the day before services and I’ll bring my child over to acclimate to the change just one on one and see how it goes.
Trying to think of all the potential issues is a big job for us who know their needs inside and out, kind of unreasonable to expect others to get all the things that could cause our loved ones distress.
We have to often give up our dreams of the perfect life, each recognition that something isn’t reasonable is another loss. But life is what it is.
We have to keep taking chances, seeing what can work, find a fullfilling life with what is and not obsess over what isn’t.
I think people when informed by and large are willing to accommodate, it’s our job to be informative and advocate for the disabled. It’s not however our job to act like the whole world revolves around our needs only.
I think when we are doing our part of being informative in a positive and not arrogant way people for the most part are willing to try and work with us, even within the general community.
Kristina Chew, PhD
May 22, 2008 at 12:57 pm
@Mom of 7, that was beautiful. thanks you so much—-it’s often scary to me to take those chances, as I just can’t know for sure how my son might respond or other people. onward into the next attempt.
The Fortune Cookies Might Be Right
May 23, 2008 at 1:36 am
[…] appropriate—life with Charlie is a journey of faith, love, grit, and […]
Back to Vaccine Court
May 24, 2008 at 1:21 am
[…] order against his parents, and, too, his very presence in church; about whether he ought to be excluded. Generally in discussions about autism the question of whether vaccines or something in vaccines […]
Lake
May 25, 2008 at 2:45 am
It is cruel to take that young man to church, period.
Autism is a processing disorder, and the strictures of a church setting are hellacious for someone who has trouble “behaving.” His mother might mean well, but she is torturing him. The sensory overload and neurological bombardment causes “unacceptable” manifestations. I feel terrible for Adam. Rather than shape autistic people to our will, we need to understand that they see/hear/smell/feel things differently, and we wouldn’t expect a salmon, for example, to behave the same as a woodchuck.
It’s appalling really, and I would find it so even if I were not someone who thinks that taking ANYone to church is cruel.
Square Pegs
May 30, 2008 at 1:18 am
[…] the past two weeks, one post after another has been about the exclusion of autistic individuals: 13-year-old Adam Race from church—and by a restraining order. […]
An Argument about “Difference” and “Deviance”
Jun 3, 2008 at 12:13 pm
[…] think this is a relevant question to ask in view of recent examples of excluding autistic children: A restraining order was filed against the parents of 13-year-old Adam Race […]
Bonnie Sayers
Jun 5, 2008 at 8:10 pm
There is a new website called Adam’s Pew and it is a tool for church leaders.
Excluded and Included: The School Yearbook
Jun 19, 2008 at 4:18 am
[…] students was left out of the yearbook of a school in Placer County, California, I felt that pang of exclusion. From KCRA.com: “It was not intentional,” said Mark Geyer, the superintendent of the […]
Autism and Faith
Jun 20, 2008 at 6:08 am
[…] couple of weeks ago, Kristina Chew mentioned a booklet called Autism and Faith in her blog. After reading it, I almost feel ready to try bringing our family back to […]
Excluded: Sorry, it’s not your right « What Sorts of People
Jul 11, 2008 at 9:18 am
[…] Jim and I don’t stand up for Charlie, people just walk by. In May, I wrote a post entitled Excluded: On Keeping the Faith about the daily advocacy a parent of a disabled child, and one’s disabled child, find […]
4-year-old shown the door at Georgia restaurant
Jul 17, 2008 at 1:09 pm
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