I'm autistic and having trouble at church


Feathertail
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I am not the parent of an autistic child. I am an autistic adult who is having a lot of trouble feeling like he belongs, at Church. I'm asking for help here, because it is easier for me to write than it is for me to speak.

I am going to try to describe what being autistic is like for me, as a person and as a Church member. It's going to take a while, because I've been dealing with this my whole life and am just now articulating my feelings about it. I'll try to make things easier for you by breaking things up into sections.

If you're still reading, here goes.

What is it like to be an autistic LDS adult?

I'm not lost in my own world. As far as I can tell my senses are sharper than everyone else's. Bright lights hurt my eyes; loud music sends me curled up into a ball in the back seat, covering my ears and humming desperately to myself to drown it out. If I withdraw, it's because I'm trying to get away from something that's hurting me bad but that doesn't bother you.

When I greet new people, I approach them like I would a small animal. I make myself small, speaking quietly and using body language to appear nonthreatening. I do this unconsciously, because that's the way that I'd like to be treated, and the kind of behavior that I see as friendly.

The people at church are friendly, I know. But they're still getting used to how I recoil from their touch, contorting and twisting away from even an innocent pat on the back. I put my hands together politely instead of shaking theirs, and I smile and hope that it doesn't offend them. I rarely make eye contact, and I wouldn't at all if I hadn't been told that I ought to.

Seeing someone in pain, even an insect or animal, hurts me badly. It surprises me when nobody else seems to notice -- although I might just not see when they do. I use paper towels to pick up bugs that got inside and set them back out, and I don't eat meat or animal products at all.

Autistic person meets LDS culture

Since I also don't eat refined sugar, I often feel left out at ward events. Last year's Christmas party was food that I couldn't eat, followed by a program that was too loud in a room that was filled with people, and I had to ride there and back in a noisy car. I went into a foyer during the program and shut the door, and paced in there with the lights out. That really helped me to calm down.

I sometimes try to talk to ward members who seem distressed about something. We usually have little to talk about, and I may have to speak in a monotone or a sing-song voice if I don't have enough energy to make myself sound normal. But I offer to help them with things, and I try to express my sympathy for them.

I get along best with children and with casual, easygoing people. I'm scared by people who are confident and assertive, and humiliated by people who make casual sexist or ageist jokes. Most people seem alien to me; I can't wrap my brain around how they think. So I'm on edge even around friendly ward members, like the ones who give car rides to me, because I don't know how they feel about me. And then I hear them gossiping about people they've met who act sort of like me, and I feel terrible.

I did not go on a mission due to personal worthiness issues. But the bishop we had at the time didn't think I'd be able to serve one anyway, even though I was undiagnosed. He just knew that I had "emotional problems," that made me unsuitable in his mind. My mom took exception to this, and believed that there were people "like me" that I would be able to reach. I don't know how this would have turned out.

What place is there for autistic people inside the LDS church?

I did not say "people with autism." There is not a person like you inside me. This is how I am deep down. And the way I am has caused problems for me, but I also feel that it's been a great blessing. I may have trouble speaking in person, but I know many people who've been touched by my writing, and I feel that being autistic -- having a sensitive nervous system and a differently-wired brain -- has helped me to feel what I need to write. I've heard it said that I seem like a different person online, and LDS friends that I meet on the Internet are always surprised when I tell them what I'm like IRL.

Making friends online is no problem for me. What is a problem is feeling like there's a place for me in my ward. I'm not being persecuted; the people around me are nice. They reach out to me just like they reach out to the Spanish-speaking members in our ward. And after I've explained my needs, they're careful to avoid overstepping my boundaries, voluntarily refraining from shaking hands and sometimes bringing food I can eat. They even let me carpool with them (I can't drive).

The members in my ward are very Christlike, and I have few objections to their behavior. Most of them don't even know I'm autistic -- I didn't know that that was the word for what I was until last year. So they don't know why I act differently, but they seem to tolerate me anyway, even the ways that I fidget in Sunday School. (Would that people had similar sensitivity for the plights of ward members with autistic children, instead of assuming that they are bad parents.)

The problem is that I don't see anyone else out there who is like me. Imagine having to go to church in Japan ... everything, every program, every Ensign article and ward activity, is geared towards people who are not like me. Everyone assumes that I'm just a weird neurotypical (person who isn't autistic), and people are nice even when they don't understand but they still don't understand.

What they don't understand

I already told you my issues with touching. But when neurotypicals want to convey a powerful spiritual message, they do things like touch, lean closer, and make prolonged eye contact. They look directly into the camera for long periods of time, in Church videos like the "Brand New Year" thing I just watched, bearing a powerful witness that makes me feel powerfully uncomfortable. I used to think I was awful for feeling distressed during things like this, and that I was broken inside. Nowadays I just feel sad and alienated. I want to feel the Spirit, but I can't do so when other human beings are imposing their presence on me. I feel like I need to hide from them.

(I especially hate when ward leaders ask us to "please sit in the first few rows." I actually listen a lot better when I'm able to pace in an empty foyer, and listen to talks over speakers. And the teachers I like best are the ones who are unsure of themselves, or simply quiet and knowledgable. When the teacher is loud and boisterous, and asks lots of leading questions where there's only one right answer, I feel out of place.)

There's no help for me in Church magazines, either. I like reading Conference addresses, but whenever the magazines talk about autism it's always for parents of autistic children. I feel sorry for them, because I know they're being forced to make hard decisions, and being judged harshly by others who don't know what it's like. But while I'm sure these articles give them comfort, what am I supposed to feel when I read about parents who think that the fact that their child is like me is a tragedy? Whose hopes of a mission and marriage for their child are dashed, because surely this person like me could never fit in? Could never be loved, or teach others the Gospel?

Probably the most hurtful thing that I read was Another Brother, a story they had in the Friend about the brother of an autistic child who didn't want to be hugged. The message of reassurance was that Jesus will make him not-autistic in the afterlife. How would you feel if you were told that there was no afterlife for you ... that you'd die and be replaced by another person, and that it would be better for everyone this way? All because you aren't comfortable with the way that they choose to express love?

I don't blame them for not knowing that this was the message they sent, and I know that it's not inspired Church doctrine (it's just a story containing one person's interpretation). But it really hurts me to see things like that. Or to hear my Institute teacher talking about a destructive autistic child that he just saw as a monster, and saying "you know how they are." These things make me feel like there's no place for me in God's kingdom, here on this earth or in the worlds to come. And in my worst moments I believe them, and tell myself that I shouldn't exist.

It doesn't help that most of the money that goes into autism research outside the Church is going into finding genetic indicators, so that they can kill people like me in the womb. I'm sorry to distress you with the thought, but I thought you should be aware. Autism Speaks is especially bad.

Can Jesus "cure" autism? Would he?

I know Jesus Christ has the power to relieve my discomfort. And when I sing "I'll be what you want me to be, dear Lord," I mean it, even if he wants me to become a neurotypical. But I don't think he does. If anything, I think that I'm autistic because he wanted me to be. And I believe that the person I am right now has value.

I don't want to wait for the afterlife to feel like I have a place in God's Church and kingdom. I want to feel like there is a place for me now. I want to know that there are other members like me, who are going through the same things that I am. And someday I'd like to see our existence acknowledged in Church News and the Ensign, not as a tragedy but as a blessing. And not as children, but as contributing adult members who volunteer and hold callings (I've done both).

I'm grateful for the Internet, because it allows me to communicate in a way that I couldn't otherwise. I'm grateful for the ability to share this with other Church members here, hopefully in a way you can all understand. And I'm sorry I spent so long writing this, and took up so much of your time.

Please tell me if there's anything that will help.

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I don't have any answers for you. But I want you to know. I thoroughly appreciate what you have written here. I mean that. It gave me so much more insight to what adults who are autistic are going through. So many things I take for granted and words like the ones you have written give me a much deeper appreciation for those who might be in the same situation.

Again thank you for opening my eyes a bit.

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Thank you so much for sharing what you have. I don't know much about autism as it is, and, until reading your post, I didn't realize it, but I have heard almost nothing about autism in adults. In describing the things you have, though, you've given me reason to want to know more, and I'm going to do some studying.

I'm glad your ward members are so caring and Christlike. Even so, I imagine it's often very difficult, just the same, to have so few people able to understand. But I do know I can say, without reservation, that there is most definitely a place for you in God's kingdom, here on this earth and in the worlds to come.

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thank you for your post, i appreciate it. Like pam i don't have any answers for you here. Having worked for years with autisitc people, i can understand the content of your post but I will never know what it is like for you knowing that at times it must be difficult.

I definately know that there is a place for autistic people in God's kingdom on earth and in the life after as each individual has their unique talents and gifts with which they can share/contribute.

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Thank you so much for sharing what you have. I don't know much about autism as it is, and, until reading your post, I didn't realize it, but I have heard almost nothing about autism in adults. In describing the things you have, though, you've given me reason to want to know more, and I'm going to do some studying.

Thank you muchly for your kind words. You may find the writings here to be helpful; they're written by autistic people. (Warning for some strong language on that first essay.) There's also Amanda Baggs, a "low-functioning" autistic blogger who has appeared on CNN before, and Michelle Dawson, who's helping with research into the "difference model" and autistic people's unique strengths.

You can read an article on Wired magazine that discusses the both of them, here.

thank you for your post, i appreciate it. Like pam i don't have any answers for you here. Having worked for years with autisitc people, i can understand the content of your post but I will never know what it is like for you

That's part of the reason I wrote this. I hope to help you understand.

Would you like to discuss the work that you did?

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Thank you muchly for your kind words. You may find the writings here to be helpful; they're written by autistic people. (Warning for some strong language on that first essay.) There's also Amanda Baggs, a "low-functioning" autistic blogger who has appeared on CNN before, and Michelle Dawson, who's helping with research into the "difference model" and autistic people's unique strengths.

You can read an article on Wired magazine that discusses the both of them, here.

Thank you very much. I look forward to reading them. :)

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I have Dyspraxia so whilst not autistic I am on the autistic spectrum and I have 2 children one who has some form of autism with epilepsy, and the other we are fairly sure is autistic. I find people relate to anyone who is kind and remembers birthdays etc. I was wondering if you could write this and give it to your Bishop ? and also the Relief Society President.

If anything I think people will have more autistic qualities in the Celestial Kingdom a lot of them make living the gospel easier and understanding them

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My daughter is autistic. I never pray for her to be "cured" or "normal", I just want her to talk. well, talk, and eventuly read & wright, but as shes only four we'll focus on talking, lol. thankyou for sharing this, I'm afraid I dont have any advice others havent already sugested. I have previously read the first talk you refered to, and honestly felt i had never read such utter bull. then I checked the date of the artical and realised how old it was. I assume people knew less back then. Some elderly folk in my ward have misguidly talked to me about dsabled people being "closer to God", but the primary teachers are being very helpfull and kind. I think (hope) that they atleast understand that she has an amazing intelect, and if she dosent reachthe age of reason "on time" it will merely be due to her lack of being able to comunicate that she has.

I am learing so much from my daughter, she is such a blessing.

thank you for sharing this with us.

I think you should show this post to your bishop, and friends/friendly people in the ward.

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I know absolutely nothing about autism. Thank you for posting such intimate thoughts and feelings.

I have a couple of suggestions. First, I think sharing this post with your bishop, home teacher, Elder's Quorum president would be helpful. I can say that most people are not aware of the needs of autistic people and this may help them know how to help you best.

Second, and this may or may not help, but if you need to listen to a talk or lesson by pacing, then do so. As a teacher, I would have no problem with someone telling me privately (whether that is you or the bishop) that a member of my class needs to get up and move. I wouldn't feel it being disrespectful or get offended. I think most people recognize that we are all different and can accept idiosyncracies more readily than we are willing to think.

Also, regarding the food at ward parties--well, I say this from someone who has dieted before. Bring your own. I've been to parties before and knew that everything there would not be on my diet, so I brought my own dinner/snacks. Most people bring food that they would eat. Honestly, most people don't think of other's diets, preferences, allergies, etc. You are not unique in this regard--there are many who have allergies or other preferences and must compensate regarding dinner parties. So, don't worry about it and just bring your own food and some to share--you'd be surprised at how people like to try new things.

It sounds like your ward is one in which they want to help you feel included. We all have things that make us feel excluded--some have more things than others, but there are several people who don't feel a part of the ward. It sounds like you are doing your best to serve and for that you should be commended.

Thank you for your words. In fact, have you considered writing an article for the Ensign? They are always looking for articles and yours would be one that would be helpful--you could reach more people in church that way. Seriously consider it.

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Thank you to everyone for responding. I did once write a handout that I gave to the Institute teacher and Young Single Adult leaders, but I don't know what they thought of it. They were very nice when we talked about it, but I can't tell if that was because they agreed or because they were being polite.

If I can attend a YSA planning meeting, I may try to speak up if I feel that an upcoming activity is not autism-friendly. (It helps if I tell myself that I'm doing this for other people, and not just me. I'm used to feeling like it's unreasonable for me to speak up.) Perhaps I should talk to other people about this as well? Or, preferably, write to them ...

If anything I think people will have more autistic qualities in the Celestial Kingdom a lot of them make living the gospel easier and understanding them

I won't confirm or deny that. Some parts of the Gospel seem obvious to me, but others I have lots of trouble with. As you can see from this post.

I personally imagine Jesus as an autistic person, but I don't know if that's because he's really like that or because that's the easiest way for me to relate to him. I find him very relatable this way though.

I once wrote a story that you may find interesting if you'd like to know how I see him. You can read it by clicking here. It would've been more seasonally appropriate a couple of weeks ago, however.

My daughter is autistic. I never pray for her to be "cured" or "normal", I just want her to talk. well, talk, and eventuly read & wright, but as shes only four we'll focus on talking, lol.

Have you considered doing things the other way around? Or doing both at the same time, maybe? I have no idea how this would work out, but it occurred to me to suggest it since I personally find reading and writing easier.

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Wow, thank-you for sharing your thoughts and feelings. I simply don't have answers to many of your questions, but let me reply by taking a stab at some of the issues.

First, you taught me more in a single post than many instructors at institutes of higher learning have taught me in semesters of formal education. Your intellect and caring are apparent and significant. I thank you very much for what you have provided me.

I can only ask for your forgiveness when we treat you in a way that makes you feel uncomfortable. I can only speak for myself, but I feel the majority of others would say the same, when I say we certainly don't intend to make you feel threatened, isolated, unwelcome, etc. Forgive our ignorance and failure to understand and accomodate your situation.

Please know that you are not only wanted and welcome, but in fact you are very much needed within the church, within society. People like you make a significant difference in helping the rest of us understand the trials and tribulations you face. And you have done so very eloquently here. Please continue to help us understand. We need your perspective.

There is no doubt in my mind that there is a place for you in God's kingdom as well as here on earth. I don't claim to know what God's plan for your condition is for eternal life, but I certainly don't believe you would be abandoning who you are for another person in your place. I can't imagine that as a possibility. Please have faith that God has a plan and that whatever that is, it will be in your best interests and not offensive to you.

Please continue to reach out and help us understand your perspective and your feelings. We need this. We need you. I know from what you have written that this is a tremendous challenge to you, but if you touch others the way you have obviously touched us here on this forum, there is such tremendous value in your efforts. I applaud your courage and your willingness to share.

I know I can't answer a lot of your questions. I simply hope that I can help you feel that you do belong. You are very much welcome. You are very much needed. Please take that and my admiration for your message. I hope it helps you find even a little bit of the acceptance you are looking for. I hope I can provide even a little of what you have provided me.

Thank-you.

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Your gift for writing can be a powerful blessing to the church. Perhaps you can give a copy of your essay here to the bishop? It sounds like you have a good community. Keep doing what you need to do for yourself. If you're not wanting to sit in the front, stay where you're comfortable. It's ok. I'm neurotypical and I don't like the front pews, either. =)

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Your gift for writing can be a powerful blessing to the church. Perhaps you can give a copy of your essay here to the bishop? It sounds like you have a good community. Keep doing what you need to do for yourself. If you're not wanting to sit in the front, stay where you're comfortable. It's ok. I'm neurotypical and I don't like the front pews, either. =)

I'm actually uncomfortable sitting where I was originally at when everyone else moves up front ...

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There are people who suffer from a personality trait called introvert but is not the same as autism. However, you are not alone friend.

When I reading to gain further clarity in seeking the area where Noah build the Ark, I stumbled across the case about Enoch's own personality, who I suspect was a introvert at times when not moved by the Spirit and began avoiding the masses when he was converted by the hand the GOD. As I know, part of his introvert was his impairment of speech and perhaps, other such weaknesses of his days that help this introversion trait gain strength around crowds.

I believe the only way to overcome any of these issues, is to assert oneself and keep striving in changing old habits in our lives.

I do appreciate your candor and expressive viewpoint on with autism as an adult.

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There are people who suffer from a personality trait called introvert but is not the same as autism. However, you are not alone friend.

I don't suffer with it... I'm quite happy with it ;)

Going back to the OP...

I have aspergers syndrome, so have to deal with a lot of the same things as yourself. Aspergers and autism have a lot in common, to the extent that some medical professionals believe they should come under the same title. I enjoyed reading your post, thanks.

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Noting your own converstion, I highly you doubt it too! :lol:

Are you physically clumsy? Asperger syndrome is more of a physical disorder with social interaction that Hans Asperger described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy.

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I don't suffer from being introverted or autistic. I rather like both. Being introverted doesn't mean that you're a recluse, it just means that most of the time you use up energy to socialize instead of regaining it by doing so. So you need a lot of time to yourself, in between times that you talk to your friends.

And Hans Asperger did his work on speaking autistic people because there weren't any nonspeaking ones available in his part of Europe at the time (there was this German regime you may have heard of that had a thing against disabled people). He and Kanner both independently used the word autist, derived from the Greek autos for "self," to describe the people they worked with.

I think the distinction is artificial at best, and gets especially blurry between Asperger's syndrome and "high-functioning" autism. It's mostly used to draw a line between "People that neurotypicals think are a little weird" and "People that neurotypicals think are a lot weird." But it overlooks the fact that even a person who seems normal / relatable might expend a lot of energy making herself appear that way, or might have trouble with other things that are harder to see from the outside.

I use the word "autistic" to refer to pretty much anyone on the spectrum, to avoid such stereotyping and help people become more comfortable with the idea of living / interacting with autistic people.

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I don't suffer from being introverted or autistic. I rather like both. Being introverted doesn't mean that you're a recluse, it just means that most of the time you use up energy to socialize instead of regaining it by doing so. So you need a lot of time to yourself, in between times that you talk to your friends.

I've never heard it summarised like that before, but that pretty much conveys how I feel about socialising with people in person.

Noting your own converstion, I highly you doubt it too! :lol:

Are you physically clumsy? Asperger syndrome is more of a physical disorder with social interaction that Hans Asperger described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy.

Yeah, I have all of those to some degree. Though I would clarify that the "limited empathy" does not mean that the person feels limited empathy, but doesn't display empathy as others might; so they can appear to be very cold, but this is unintentional.

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Yeah, I have all of those to some degree. Though I would clarify that the "limited empathy" does not mean that the person feels limited empathy, but doesn't display empathy as others might; so they can appear to be very cold, but this is unintentional.

What I have noticed when sealing a person based on their desire of spirit, when the individual finally receives that desire [i.e. ‘surety of the word’] they tend not to socialized with the world, including other members of the local wards or stake. This seems strange but noting my encounter of writings based on Enoch own conversion, it reveals the same pattern. ^_^

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Feathertail:

Thank you for your post. My son is 10 years old and was diagnosed with Aspergers Syndrome 2 years ago. We had a hard time at Church (we are in Branch), but once moving him back to the Ward (prior to the split), he has been doing wonderful. Even though our records still reside in the Branch and we attend the Ward, we know that we are doing the right thing for our son. He is growing in the Gospel, has no meltdowns (while at Church) and loves attending Church.

No, I have never wished my son was "cured" of autism. He has shown me things that I never would have noticed if he wasn't the person that he is. I love him just the way he is;)

I do have a suggestion. Since you write beautifully, why don't you submit an article to the Ensign about your struggles at Church? There are thousand (or more) members who have no idea what autism is, nor what it is like to have autism in a neurotypical world.

As a parent, thank you again!!

Dawn

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Like the many others who have answered your post I would like to thank you. You have admirable clarity in your writing, and while I am not autistic and do not feel the severity of difficulty you do in social settings I am an introvert and feel drained as you described after interacting with others.

I have a younger brother who is undiagnosed, but has some form of mental handicap that is very similar to autism and Ausbergers. It did not fit enough of the traits of either for him to be diagnosed and there is nothing that really fits him, but I imagine that he must feel a lot like you inside.

He is 17 and attending his first year in High School. I feel a deep connection with him and am sometimes the only one that really seems to understand him, though I know there is much I will never be able to fully understand.

I do know that he has a hard time grasping complex concepts, and he requires much repetition to understand even simple things. To this day he does not understand money, and we still work with him to help him count coins. He will not trade five ones for a twenty dollar bill, because he does not understand the worth and value pinned on the pieces of paper and thinks he is being given less than what he has.

He picks up on tension in a room easily, and the slightest frustration in your tone of voice will make him tense and closed off. He gets stiff and closes himself off, refuses to listen and will attempt to put the aggravator in their place in a gruff commanding tone of his own. When this happens, I know that he is feeling overwhelmed and everything is going a little over his head. When I can, I pull him aside and talk to him.

I talk about how he is feeling, ask what is bothering him, why he is feeling the way he is and let him tell me. Usually, it is because he was offended by something someone said or did not understand that someone was trying to be helpful and was only impatient because something had to be repeated.

Example: My brother is allergic to dairy but loves cheese. He often gorges himself on cheesy products and later regrets it, because it makes him feel sick. Everyone in the family tries to get him to go easy on the cheese to no avail. One day he was heaping shreaded cheese onto a tortilla to melt in the microwave and another brother (aggravated and annoyed by the necessary repetition) told him not to use so much cheese. He got stiff and angry and basically said not to boss him around and tell him what to do. He'd been having spouts like this for a few days that were going unresolved so I pulled him aside.

I asked him why he was angry and after he explained I told him that his anger was a choice and he needn't react that way. "You know you're allergic to cheese right?" I asked.

"Yes." he replied.

"It makes you feel sick right?"

"Yes."

"So, we don't tell you 'not so much' to be mean, we're trying to help you. We aren't trying to order you around. We may sound angry, but we're not. We're just getting frustrated because you don't listen. You know too much is bad for you, and we're only trying to help. You don't need to get angry."

At this point he clearly understands, and he feels horrible. He is in tears, shaking and sobbing. I let him cry on my shoulder, give him a hug and offer some comfort. After the release, he's back to normal until something overwhelms him again.

He relates experiences like this very closely with Jesus and Satan. He will often say, when he has overcome his anger, that he has won a battle with Satan, that Satan is gone now and he "showed him".

His habits often seem eccentric to us, and I know he has a hard time fitting in at church. The boys in Young Mens will pick on him and he refuses to go to Scout Camps because of this. Others do not understand that when he gets angry he is feeling overwhelmed and just needs someone to pull him aside, explain things clearly and simply, calm him down and comfort him. He is not destructive in his anger but will sometimes make threatening comments that I know he doesn't fully understand.

I have often wished I could understand him better and help others to understand him better as well. I know a large part of his difficulty understanding things is because there is something different about the way he perceives things that makes it harder for him. We do our best to make accomodations for him and help him, but sometimes others do not do the same.

The settings we find ourselves in for social activities accomodate the majority. Some (like the introverts like myself) experience mild discomfort but are able to tolerate it in a manner that there discomfort largely goes unnoticed. Others (like my brother) experience far greater discomfort and find themselves unable to adequately convey their feelings and communicate with their peers. The unsympathetic, instead of making accomodations will simply exclude them. The sympathetic will attempt to make accomodations, but do not always understand what these people need to feel included.

You have conveyed your difficulty in feeling included and described your preception. The people in your ward sound like they want to understand and help. I think they are doing the best they can, but need more input from you to know what else they can do. Since you are a wonderful writer, I would suggest using this tool to your advantage.

I am sure there are many who would like to do more if only they knew what to do, just as I wish to connect better with my brother. My understanding of him comes completely from an outside view, and though I am a very observant and perseptive person there is only so much I can grasp. He cannot adequately communicate with me. You, however, have a gift. You are autistic and so similar to my brother and many others. Yet you have taken to writing in a manner that is very clear and understandable to the "normal" majority. Your insight into this world we will never experience and so never fully understand is amazing.

Again, thank you. I hope you continue to write, that you give your writing to those around you, and that you find some way to teach others about these wonderful autistic people.

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