I'm autistic and having trouble at church

[JudoMinja]

Hey, I've got a question for you feathertail:

I was pulled into the primary to help with one of the sunbeams classes this Sunday. One of the children is autistic and adhd. My entire time in that class was spent attempting to keep this child- William- entertained in a manner that he would not distract the other children from the lesson. I found this very difficult.

I thought of my brother, what limited information I've studied about autism, and your post. Yet, I still struggled to get through to him. I did manage to keep him from distracting the other children well enough that they were able to take in the main purpose of the lesson, but I wish I could do more. I wish I could communicate with him and help him so that he too can learn from the lessons.

Do you have any suggestions on how I could do this? If you need more details about his behavior, please let me know. I don't really know what would help you come up with ideas, and there is a lot I could share about my experience helping in that class.

Thank you for your help.

[RanMan]

To me the answer seems obvious to me, (but I could easily be missing some important element) express yourself in writing. I think a good step would be to take your opening post here and read it during Fast and Testimony meeting, or have someone read it for you. People often act in ignorance, and the way to improve things is to educate them. Having read your post I think that I would be much better off in any contact I had with an autistic person.

If you are having a situation with a particular person, maybe writing them a note would work.

Just a suggestion, hope it helps.

:)

[Feathertail]

Hey, I've got a question for you feathertail:

I'm reluctant to become his spokesperson, because I have no primary / nursery / childrearing experience and because I don't know what is going through others' heads. You may find this link helpful, however: Home - Disability List - Autism

I've also heard of people who had positive experiences using video games (in this case an iPhone) as motivation: feathertail | iPhone FTW?

I do know that there's a lot of frustration involved when you're trying to communicate something and not being understood. It's worse when you're a child, though, because you're in a position where others think that "communicating with you" means giving you instructions. You start to realize there's no way to tell them that you can't do the things that they ask of you (I say this even as one who was able to speak), so you get frustrated and stop trying to communicate and become unpleasant and surly.

What do you and he hope to accomplish by having him present in class? What is he having trouble doing (or not doing)? What else could he do instead?

To me the answer seems obvious to me, (but I could easily be missing some important element) express yourself in writing. I think a good step would be to take your opening post here and read it during Fast and Testimony meeting, or have someone read it for you. People often act in ignorance, and the way to improve things is to educate them. Having read your post I think that I would be much better off in any contact I had with an autistic person.

I've showed it to some LDS friends that I already knew. One was helpful, while the other was weirded out. I'm going to show it to my LDS therapist when I go to see him this Wednesday, and see what he thinks I should do.

I'd like to write something for Church magazines, but I'd probably have to change the tone of the message and offer specific advice. I'd also want it to be something that autistic Church members could read and hold onto as a sign that it's okay for them to be here, and could take some specific ideas from.

Edited January 11, 2010 by Feathertail

[JudoMinja]

I'm reluctant to become his spokesperson, because I have no primary / nursery / childrearing experience and because I don't know what is going through others' heads. You may find this link helpful, however: Home - Disability List - Autism

I understand not wanting to play spokesperson and I didn't mean to sound like that was what I was expecting. I was just hoping for some ideas as far as the autism goes that could help. I will look over the link you provided, and thanks.

What do you and he hope to accomplish by having him present in class? What is he having trouble doing (or not doing)? What else could he do instead?

In the Sunbeams class they have a short simple lesson on a gospel principle. The lesson I sat in to help with was on Heavenly Father and Jesus Christ having bodies just like ours.

What was difficult was that he was, for the most part, completely unresponsive. He was also very wild and roudy- which was distracting to the other four year olds as any child that age has a short attention span and is easily excited.

At first, I thought I could help him learn from the lesson, but my purpose in that room quickly became just keeping him reigned in so he wouldn't be a distraction. He was running around the room, jumping on a section of the floor that had a hollow storage compartment so he could hear the loud echoing sound, taking the papers the other children were using to color pictures to rip them and crumple them, trying to eat the silly-putty the teacher provided for some tactile stimulation, attempting to dig through the teachers bag to pull everything out, throwing the shiny ball I provided in an attempt to get him to play catch with me in the corner clear across the room and chasing after it, and finally pushing and knocking over the other children.

I know he saw me as an authority figure in that room, resented it, and did not want to listen to me. Whenever I did anything to limit what he was doing or wanted to do he would punch me, push me, stomp on my feet, and stick his tongue out me.

I never felt upset with him for his behavior and only felt frustrated with myself that I was unable to connect with him. There would be brief moments where he seemed to be responsive and want to listen to me, but it would only last for brief seconds after I'd managed to figure out something he liked. At one point, dragging him across the floor by his feet got him laughing, smiling, and looking at me. When I first brought out the ball he would look at me and attempted to talk to me, but it was only to convey that he wanted me to give him the ball. Once he got too roudy with it and I had to put it away, he grew angry with me. He kind of played peek-a-boo with me for a few seconds when he was trying to sneak past a chair to get around me. And he liked being picked up and slung over my shoulder so that he was upside down, then pulled back upright again.

I don't know if they will ask for my help in that specific class again, but I want to help him. I want to connect with him and get past him seeing me as an authority figure, and I want to get beyond just tempering his energy so he can learn from the lessons.

Thanks again for being willing to offer what advice you can, and I know you aren't his spokesperson, so don't worry. :) Just looking for some help from someone who might understand better than I do. And I plan on talking with his parents too if I can find out who they are to get some more personalized input from them.

[Feathertail]

Just so you all know, this thread is now #2 on a Google search for "autistic Mormon," and the #1 result is another thread on these forums. Maybe I should start a blog about this. >.>

Volunteering episode

I went down to the Bishop's Storehouse this Tuesday to volunteer, and some of the people were tense around me because they couldn't understand me as well and didn't know what to expect. Others were more easygoing though, and I seem to be good at making that kind of person laugh just by stating the obvious.

Having to get up so early (or not go to sleep the night before, actually) kind of ruined my sleep schedule, though, and on the car ride home I was tired and incoherent and the person I rode with was playing loud music that I didn't like. I was a wreck for awhile afterwards.

Getting some answers

On Wednesday I spoke to my (LDS Services) therapist, and we came to the conclusion that the biggest thing that would make me feel more comfortable is if I were more inclusive and welcoming to others. I honestly struggle with prejudice against neurotypicals sometimes ... being surrounded by them and being in the minority all the time makes it easy for me to feel scared and insecure. From there, it's not that big of a step towards resenting them.

I had a lot of trouble with this when I was younger, because I hated myself sometimes and I hated the people around me for making me feel that way. It became less of a problem, though, as I made friends online and found ways I could help other people, and found out that it's okay to be the kind of person I am.

The Upshot

I need to maintain my confidence, and find ways to keep it from eroding when I'm around people who are different. I also need to maintain my energy levels, in order to keep from becoming erratic and messed-up, and I need to keep unpleasant sensations from overwhelming me. I already keep lots of comfort items in my laptop bag, from hand lotion to an emergency plushie, and I'm thinking of bringing an eyeshade for sleeping so I can withdraw even better.

I feel sort of like the parent of an autistic child, except that it's myself that I'm taking care of. And it's hard to get used to the idea of me being this fragile, because I grew up in a culture that says that "weakness" and "weirdness" are unacceptable. I'm used to trying to just tough it out, and being driven to frenzies of self-hate or despair.

I'm capable of things that amaze even myself, though ... feats of writing and storytelling which appear to inspire others. So I need to be sure to take care of myself, like I would any delicate instrument. And I need to give myself permission to do these things to maintain my sanity, whether it's listening to my MP3 player while working at the Bishop's Storehouse or asking people to turn down the volume on things. Or even leaving if necessary. And I need to do these things quickly so that I can be friendly about it, and not wait until I'm worn-out and resentful.

I find it easier to talk "normally" if I do that, at any rate.

Hopefully I'll find it easier to do all these things as I become more confident. Does that make sense?

[RanMan]

I've showed it to some LDS friends that I already knew. One was helpful, while the other was weirded out. I'm going to show it to my LDS therapist when I go to see him this Wednesday, and see what he thinks I should do.

I'd like to write something for Church magazines, but I'd probably have to change the tone of the message and offer specific advice. I'd also want it to be something that autistic Church members could read and hold onto as a sign that it's okay for them to be here, and could take some specific ideas from.

I think you should submit it to the Ensign magazine. (Don't know if this was already suggested or not.) But it is the kind of thing that I believe they would print because it is important for us to be educated about the subject. Better education will result in a better situation for everyone. Not that everyone will respond appropriately, but many will respond in a way that helps everyone feel more comfortable with this.

:)

[havejoy]

Feathertail, I just want to say thank you for this thread, especially the opening post. My 29 year old son has Down Syndrome and is Autistic. You've solidified some things in my head I thought I knew from observing him all these years and you've given me much insight in ways I wouldn't have come up with on my own.

I'm overwhelmed by your clarity of thought and your insight. There is something incredibly right and good about you. What you have is not a handicap but a gift.

Thank you.

[WillowTheWhisp]

Thank you so much for this thread. I have only ever read things before from an outsider's point of view on how they believe autistic people feel and react. This is the first time I have ever read what it is like from the autistic person's point of view. It has been a real eye opener and has helped me to understand people a lot better.