Do Your Religious Convictions Help You Cope with Autism?

My son is 18 and “highly involved” non verbal… things are changing, but only because parents are, as usual, creating the reality for their children… and there are lots and lots of children with the diagnosis… and developmental disabilities in general. Here’s a timeline: baptism: no problem. CCD for first communion: teacher was a spec ed teacher, class was no problem, actual communion no go: church wanted ALL kids to go together (a good idea) but other parents flipped out about dress code – and my son would not wear a suit, literally ripping it off. -hey, there’s a naked person in everyone’s clothes, and forgiveness is the name of the game! time marches on – worked with archdiocese, made progress, then Cardinal was replaced with a man who I charectarized as a bean-counter… time marches on, more kids with diagnoses… now there are “special needs” masses, and I’m working with one of the parishes to conduct RCIA/CCD for young men living in an IRA (residence) – we’re starting in a couple of weeks after about a year of planning & negotiating. One of the young men in this residence is Jewish – and we’ve made bar mitzvah studies available for him, also (it’s a mitvah, after all, to work with these guys!) but I’m not sure his parents are interested… Under mental health law (here in NY) support must be provided to residents who wish to go to church (or go to a gym, or whatever self-directed activity; “self-directed” becomes a sticking point, so this must be addressed during ISP meetings)
You mention “community” – that’s motivated me to get this off the ground… someday I will no longer be checking up on my son regularly. I’d like to think that someone will notice if he misses a mass, or that he doesn’t seem to be doing so well, or whatever. In short, widening the circle of support. As far as support for me, overall I’ve had to create it – but it’s easier with religion than, say, children’s servicces/child welfare.

I sincerely doubt that anyone from our church would notice if my son ever just stopped volunteering to do things let alone if he just stopped going to services. If they did notice, then I would be really surprised in even just one of them took it upon themselves to even inquire why. As best I can see, no one there has ever really seemed to be concerned with his personal or emotional welfare – either on a “care for the least of thy brethren” level or a regular friendship-based level. However, it has been a darn sight better than the active shunning and/or bullying he experienced at school.

This is where “parents creating realities” comes in: it’s not just a question of attending services, it’s also plugging into the community -stuff like youth groups and any and all other community supports. Generally, I’ve found programs for the teens and elderly a good starting point. And, again, this is part of a larger circle of support, not the obnly area we’re working on.

I disagree with “parents creating realities”… “parents creating opportunities” I can agree with; but whenever I’ve attempted to micromanage my son’s social life, it has blown up (rather cruelly I might add) in HIS face. As I mentioned, my son does volunteer with the Church and goes more regularly to services than I do at this point. He is attempting to forge his own way within that community, and I applaud his efforts. I just haven’t seen any real indicators of anyone within that particular community agreeing for forge a deeper relationship with him. They are, at least, not beligerant with him and don’t bully him (as his schoolmate did); but they do seem (at least at this point) to want to keep him at a certain distance. They are not “embracing him” (yet at least) as a full-bodied member of that community.

To explain: I use the term “reality” deliberately – that’s how you get to available and accessible opportunities – my experience spans decades now, and with the military it’s ranged from “keep them out of sight” to a DOD commitment to ADA and O-CONUS supports. I’ve also dealt with planned transfers where “opportunities” are portrayed – and actually have waiting lists that exceed deployment.

The differences among people with ASD are huge. Some people are not socially outgoing – they do not and cannot forge their way in a community without tremendous supports and interventions. At the same time, community is an unavoidable and critical necessity. Meddling? well, maybe. But inarguably everone – NT or Dx’d say their parents are known to meddle – it’s what we do.

… and some people with autism greatly resent being forced into numerous social situations by their parents. Over years, this can create a tremendous gap between the parent and a resentful young adult with autism.

I see it as a matter of achieving a delicate balance and this, I believe, involves the acceptance of some realities rather than insisting on “creating realities” for the child. Not every NT person or NT-based social group is enlightened enough to take the added step of embracing a person with autism as a true friend… at least yet. Some groups, such as middle school children, have difficulties just avoiding a tendency to torment people of difference.

I’m simply saying… my son is actually more successful when I don’t push quite so hard for him to fulfill my vision of what he should be doing socially and allow him a little breathing room for doing some trial and error on his own. It’s a learning process he’s going through that enables him to associate elements of his behavior with how other people react to him. Not every person with autism is perhaps capable of learning this, but my son believes he can… and I do as well.

I am available any time to offer suggestions and explanations to him as to why the people at church aren’t yet embracing him… and yes, he does seek my advice. Just last night, we were talking about some conversation he’s been having with a colleague at work about differences between their respective faiths.

I’m also available to anyone from the community who approaches me about how things like how they might communicate more effectively with my son; but frankly they’ve yet to inquire about anything.

(sorry… interrupted… continuing)

I’m for advocating for the establishment of support programs and policies changes that don’t discriminate against people with autism… and perhaps this is what you mean by “creating realities.” However, I describe those activities as “creating opportunites” because the people being convinced to change their attitudes, etc. are the NT ones… who hopefully will respond by creating a better opportunity for the person with autism to become friends with them.

I have faith that both of my children will continue to develop, learn, and adapt, albeit at their won rates. But it’s not a religious faith.

I would check this box: “I wish I were religious because maybe such faith would help me cope with all that life throws at us!”

I have heard of some religious communities behaving like communities should behave, providing loving support to people with autism and their families. Alas, I also hear stories of religious communities that are not supportive.

If I left it up to my son, he’d never have any social interaction just due to his anxieties. You cant throw a child with those issues into social interactions and not be part of the support and modeling. A child with autism can easily fail without the support and then I can understand that person would not want to attempt to experience it again in any shape. My son hated birthday parties, and yes, I forced him to go. Without exposure and the opportunity, that person will never have the opportunity to gain social and coping skills and how to deal with an inflexible, unpredictable situation. Yes, we’ve had bad experiences too, but we reinforced it’s not the end of the world and trying is what counts.

The only problem I have found with church is you’re teaching abstract concepts and a literal thinker has a real hard time with it. But at the same time not offering it, there’ll never be the connection.

I know I’m digressing from the original topic, but I just had to throw in my opinion here.

Sandy-2000 says: “Without exposure and the opportunity, that person will never have the opportunity to gain social and coping skills and how to deal with an inflexible, unpredictable situation.”

Not necessarily. If you’re taking an 8 y.o. to ’socialize’ with other 8 y.o.’s, he’s only getting experience with that age. How does that help him when he’s 21 and has to deal with 21 y.o.’s? It’s a very different kind of socialization. You don’t just morph your interactions at a given age to fit later experiences. People interact and socialize differently at different developmental points in their lives. You talk with your boss differently than you talk with your spouse. Learning how to play with an 8 y.o. doesn’t mean you’ll be good at dealing with coworkers, bosses or spouse 20 yrs later.

I was involved in a lot of activities (band, Girl Scouts, etc), and I had a TON of home support. Personally, being pushed into socializing did MUCH more damage for me than it ever helped. Being thrust into the world of crazy, often confusing social cues, I didn’t learn coping skills. I learned how to withdraw. It was mentally exhausting for me to have to process all the overwhelming cues and sensory overload (birthday parties are loud, chaotic and visually *bombarding*). When coupled with bullying (which happens, no matter HOW much a parent or teacher supervises the socialization) I found it much more comfortable to retreat into my own world where there were no pressures. My books were my escape from the assaulting NT world.

Continued…

To this day, I am always wondering if I’m doing/saying things the socially accepted way (even despite the loads of socialization I got, the tremendous support from my parents, and my ability to “pretend to be normal”). I do not enjoy socializing (it takes me a day or two just to recuperate from interacting) and I don’t feel that it makes me a “failure”. Unless you are on the spectrum, or an introvert, I doubt you can ever really appreciate just how taxing the art of interaction can be.
…Continued

To parents of individuals with autism: Please do not think that preferring to be alone makes your child a “failure”, or that you should push them into social situations. The anxiety does NOT diminish over time by being around people–it only increases and breeds resentment of socializing. Your children are NOT YOU, they may not place the same values on socialization that you do, and you cannot change that, no matter HOW many activities or playdates you force them into. It doesn’t mean that they can’t be successful in life, or even grow up to be happy people. It just means that they are their own person, and they should be allowed to make their own decisions about what activities they are comfortable with. Don’t judge them. Just love them.

TWC~ as I appreciate your experience, that is your experience. I ‘thrusted’ my child into play at age 4 with kids who were 4 and 6 years older than he was. It was called dyads and it helped my child greatly. Not all kids with autism want to be alone and never play with others. My child wanted to play with others, he just didn’t know how and with limited verbal expression it made it difficult for him and peers. A child with autism also needs that supervision not only for that child to be successful, but so the peers have fun, too. My child wasn’t even aware I was the one directing play and in most therapies my son has had, it was play to him. His focus was too much on those 2 kids and of course my son is different than you, when he could speak he did ask for help and still does. You also cant compare age 8 with peer age interaction and how that will help when the child is 21. Obviously things change when a child is 10 so the support would also change as the child progresses and ages. What’s learned at age 4 is sharing, asking the peer what they want to do instead of always doing what the child with autism is obsessed with, coping when the peer wants to play something other than trains and seeing how their game could be really fun and yes, those skills learned at age 4 carries still to the age my child is now. Those skills are what all children need to learn, autism or not. Autism isn’t an excuse not to learn them.
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There are parents of any child that pushes them into sports, scouts and so on. I do not do that. My son simply isn’t the sport type. I did force swimming lessons, and you’re right, my son anxieties were off the scale and the night before the first lesson was the first and only time he wanted to be dead. There was no asking the child to make his own decision about it: He had to learn how to swim. Well, a nice learning opportunity was when none of his fears came true, he loved the lessons and wanted to go back every year even though he learned how to swim with just that one 3 week session. I used that horrible pre- experience to teach that his fears don’t have to over come him, and those fears will prohibit him. Maybe it’s all in the manner it’s explained to the child that makes the difference or how the parent uses experiences as teaching. I’ve never had a problem like that since. And again, had I not had my child involved, he’d make his own choice to never experience anything to later find out he liked it a lot. Children with autism cant always make their own choices and decisions and no child really can.

It’s because I love my son very much that I do these things, and the progress was well worth it.

I am endowed with Asperger’s Syndrome.

I have an observation which may apply to a segment of the spectrum. The ritual and the music of religions may appeal to some on the spectrum; I know I was intrigued as a youth.
As an adult I have come to realize that I probably do not experience spirituality like neurotypicals do; no sense of belonging or serenity or communion with a group. I can admire the beautiful building and the ardent musicians and singers but walk away feeling no different than had I attended a concert.