“I can’t discipline him out of his autism”

If you have come here today because of the Adam Race story and are looking for other information about autism and Catholic life I have two other articles you might be interested in:

Can My Autistic Child Recieve Communion
Autism and Catholic Life

image of St. Dymphna,
patroness of  nervous system disorders

“I can’t discipline him out of his autism”, said Carol Race, the mother of an autistic teen boy.  She feels her priest expects that she should be able to do so.   I suppose that is possible it is what the priest is thinking, it could also be that he is simply at the end of what his parish can reasonably accommodate.  The Race’s have been attending the same parish since 1996 with their five children and now the family has a restraining order against them to keep them from bringing their six foot tall, 225+ lb, 13 year-old son to mass.

The Star Tribune in Minneapolis & St Paul, MN has two articles on this story.  I would like praise the authors of the articles for the fair and balanced way they handled the stories.  While the headlines: Church bars severely autistic boy from mass and  After warning, family of autistic teen attends different churchdefinately are there to draw attention the articles themselves tell the story in an even handed way that I am unaccustomed to seeing in the main stream media when it reports on anything having to do with the Catholic Church.  Reporters Pam Louwagie, Curt Brown and Laura Pabst could have talked to the parents and the disability community advocate/activists folks and come away with some screed about the horrible Catholic Priest who won’t let this poor family come to mass.  Which would have been much more sensational and not true and with the tragic effect of putting in the minds of parents with autistic children that the church doesn’t want them… which is also very much not true.

A careful reading of both articles paints a sadly familiar story.  This family has been attending mass in the same parish since their teen was a baby.  Week in and week out with their five children, drawing strength from the Mass, their faith and community.  In 2005 Carol was given an award by the Diocese of St. Cloud “for her efforts to encourage families with disabled children to attend mass” and even in this current situation she says, “The church isn’t bad. But it’s what some individuals do within the church” and that she hopes this doesn’t reflect badly on the church as a whole.

I feel very badly for this family.  The articles talk about how their son, Adam, gets something out of the mass.  That he responds to the ritual and the routine.  I can attest with my own daughter how true that can be, how calming and wonderfully spiritual mass can be to someone with autism spectrum disorders.  But I suspect the parent’s are not being completly objective.

Their current priest has been serving in this parish for three years; last June he went to visit the parents.  There were concerns with their son’s behavior.  The parish says it offered services through Catholic Education Ministries and Caritas Family Services which the parents refused, that they eventually offered mediation to convince the family not to bring their son to mass and finally had to use a restraining order.   Why would a parish that has been serving this family for over a decade suddenly go from welcoming them to getting a restraining order in the course of a year?

The affidavit filed by the parish states that Adam would spit (his parents claim he made spitting faces), that he urinated in the church (the parents agree he is sometimes incontinence), that he hit a child, that he knocked over elderly pairshioners as he blotted from the mass (mom and dad claim he bumped into them), and on Easter he ran out into the parking lot and started their family car then got into another car and revved the engine (the parents say he is drawn to engines).   The diocese says the restraining order was a last resort, the parents are understandably upset, and the advocacy person, Brad Trahanm (RT Autism Awareness Foundation)  proclaims “It’s unfathomable and concerns me that we’ve taken a situation with special needs and we’re making it into the criminal matter. ”

It is obvious that there is a lot of disconnect here.  The parish sees things one way and the parents an other.  The news reports this as though it were a straight forward two party disagreement, but it isn’t at all.  On one had there are the parents.  They obviously feel serious enough about their faith to attend mass every week (presumably) with a severely autistic child.  And not just that, but they have helped other parents of disabled children by encouraging them to take part in the Mass and their parish’s community life.  Mass is important to the family.  When you are taking a child to mass and you sit in the back pew or the cry room because you know your kid might well have a disruptive meltdown, you bring cloth restraints, you leave during that last hymn to “avoid interacting with other parishioners on the way out” and you sit on your child to calm him — you have a problem, obviously, but that also speaks of a great deal of dedication.  It is terribly unfair to ask this family not to come to mass.

The priest has a responsibility to serve his entire community and I suspect he has heard a lot about the situation from other parishioners.  If parent’s of small children are worried about taking their toddlers into the cry room because there is a boy as big as a man having a meltdown in there, or if an elderly parishioner is afraid to get to close to the kid because he might get knocked down, or you have a teenage boy who “once pulled an adolescent girl — an exchange student staying with the family — on top of him, grabbing her thighs and buttocks” in Mass — the priest is going to be expected, by the entire congregation, to do something.  That something is not going to be to “educate” the community on autism to explain away things like spitting, urinating and running out into the parking lot to rev up the engine of another parishioner’s car.   It is terribly unfair to ask the entire parish to come to mass and have to worry about what Adam will do next.

Then there is the larger community of people with disabilities and their families.  We need to have access to the Sacarments just like any other family.  Already there are too many families not attending mass with their child with emotional disabilities for fear of what others will think.  In the news article another parent, Tim Kasemodel, asks “What are we supposed to do, literally lock our kids away so no one has to see this for the rest of their lives?”   There are a lot of autistic children out there and we will see more and more of these kinds of situations as they grow and hit puberty.  The Church needs to be able to address our families’ needs in a substantive way.

As sad as it is, as much as I hate saying it, the priest seems to be in the right in this situation.  He has the responsibility to make sure that every parishioner can attend mass and feel safe.  While small noises and even a very occasional out burst are acceptable and understandable it sounds like Adam’s situation is beyond that — and perhaps it is of note that a judge agreed.   The boy is big, intimidating and from everything in the article, even the parents’ own statements, they can barely control him.  They have been lucky so far.  Adam could have put the car in gear and killed someone, he could have knocked over an elderly person and seriously injured them, the parents of the child he hit could have filed assault charges.

Puberty and autism can be a cruel mix.  The added size as the young person approaches adulthood, the hormonal changes that can lead to mood changes and aggression, plus the lack of impulse control and the lack of empathy so common with autism can create a situation that is very dangerous.  The child is almost over night large enough to do real harm, unpredictable and sometimes aggressive, with no impulse control and no understanding they they can hurt others, or even that others can be hurt.   I have been there and lived this.  Our family made the very difficult choice to place our daughter in residential care when she became physically aggressive with her younger siblings.  I know other families have faced a similar situation and made the same choice and still others who have managed to deal with their child’s behaviors in home.  Every situation is different, but my guess is that about a year ago Adam Race’s hormonal changes and growth made his attendance at the mass his family had been taking part in for 12 years too difficult for the parish community to manage.

I wish there was a good solution that would allow the family to bring Adam to mass.  But I am afraid that it is in the end asking too much of the community.  I doubt that any amount of education about autism would make a frail, elderly man feel safe if he sees six foot Adam bloting his direction.  I don’t think there would ever be enough explanation that would make a mother comfortable taking her toddler to the cry room if the Races were there with their son in flannel restraints, even if the restraints are calming to Adam.   So does the old man fear if he has to use the restroom that he might be knocked over on the way?  Does the young mother have to miss part of mass because she can’t use the room that was designed to allow her to comfort her fussy baby and still be in attendance? 

I have often observed that the cruelest thing about our daughter Rachel’s autism is how her behaviors make her world smaller.  She can’t go camping like other kids, she can’t go to sleep overs, she misses a lot.  I hope that the Race family can find some solutions that work for them and for their parish.  Perhaps they can alternate masses between the parents so one can stay home with Adam, maybe they can find a special needs mass that would work better for them, maybe they can take Adam to a week day mass.  It is sad and unfair that Adam can’t attend mass with his family as they have been accustomed to, but it would also be unfair to ask the entire parish to have to attend mass in the situation describe in the news articles.  This is one of those times where life is just unfair.

(I originally posted this yesterday, but a lot of incoming links have been coming to this post so I am bumping it to the top)