Need help with my Autistic brother

[Gretchen]

My little brother is Autistic, and he hates church. He is in the Young Men's program, and he refuses to be baptized. And, for a while, he wanted to kick a very nice family -I'm going to call them the Bobs- out of the ward with the reasoning that he sees one of the children at school, and that's enough. He -my brother- once went up to the pulpit in testimony meeting, and told the ward that he was going to change the church into a school and that he was going to kick the Bobs out of church. Then he tried to lead the ward in the pledge of allegiance. It got to the point where our bishop went to my dad and told him that he might want to consider medication for my brother.:eek:

It's not that I don't love my brother, I really do. It has just got to the point that I'm going insane. He refuses to eat veggies, he refuses to get baptized, he refuses to even admit that he's got a problem!

Any one got any advice?

[IntoGod33]

Wow...this sounds like an extremely tough situation. Autism is a difficult condition to deal with. What do his doctors say? Never forget that autism is an extremely complicated disorder that impairs social interaction skills. If his behavior is getting worse, you might want to go to a different doctor. Children and young adults with this disorder often need intensive treatment - that includes individual and family treatment as well. After all, you guys need to know how to deal with the disorder too. I've read that autistic children really need a strong family - which I'm sure your brother definitely has. Talk to doctors, do some research, and, as always, pray. Maybe he's just at a tough age (early teen years). Obviously his behavior is surprising.

I really don't know what else to say! I hope it helps a little.

[MarginOfError]

I'm not sure what the degree of your brother's autism is, but my first instinct is, honestly, to laugh. Talk with the Bobs and make sure they understand the situation. As long as they're aware that the autistic mind is perfectly capable of seeing a minor disturbance as a major offense, they should be able to accept that it has more to do with the condition than it does with them.

In the meantime, try to keep your brother away from the pulpit.

[DigitalShadow]

I'm not sure what the degree of your brother's autism is, but my first instinct is, honestly, to laugh. Talk with the Bobs and make sure they understand the situation. As long as they're aware that the autistic mind is perfectly capable of seeing a minor disturbance as a major offense, they should be able to accept that it has more to do with the condition than it does with them.

In the meantime, try to keep your brother away from the pulpit.

I agree completely. I read your post and was trying to think of what to say, but I think MOE said it better anyway.

BTW I'm 26 and I still refuse to eat veggies. I don't care what people say, I don't see how something that tastes that bad could be good for you.

[ruthiechan]

First of all your brother needs constructive help. He obviously does not know what the point of Testimony meeting is. He does NOT understand other people nor their feelings. I was listening to NPR and this fellow was talking about autism. There was a test done between two groups of kids. A normal group and an autistic group. What I remember most is this fellow saying that they gave the kids pictures of people with expressions and different types of hats. They had to organize them by emotion. Happy or sad. The normal kids organized them appropriately, the autistic kids organized them by the color of the hats.

As far as I understand it there is no medication for autism. There may be medication to help with the symptoms, like the OCD behavior and getting stuck on thoughts. However, the medication only fixes certain symptoms, he's not ever going to magically be able to read expressions and understand social situations and what is appropriate. The only way he can improve on that is through cognitive therapy tailored specifically for helping him figure this stuff out. It can be done. My husband's best friend has Asperger's Syndrome and while he's not entirely comfortable in social situations he can handle them. He has a psychiatrist he sees on a regular basis and a family that is highly supportive. When growing up they explained things to him in detail when necessary but they also treated him like a normal person.

It was inappropriate for your Bishop to suggest medication! That shows ignorance on his part. Your family needs to speak with the Bishop. Your family should definitely explain the situation to the Bobs, including the kids to avoid hard feelings. In Priesthood and Relief Society (where you son is not present) it should also be explained. My mother did that for my brother who has Asperger's Syndrome which is a form of autism. This has helped people deal with my brother better.

I don't know what kind of autism your brother has but if it's Asperger's Syndrome I highly recommend this book The Complete Guide to Asperger's Syndrome (Hardcover) by Tony Attwood.

PS: Pick and choose your battles! Forget the veggies! It's not worth it. Do NOT pressure him to get baptized! That is not the spirit in which baptizism should be done. Has he gone to the doctor about this yet? If not, he needs to go. At the very least your parents need to talk to a doctor about this to get advice on how to constructively help their son, and you should go to so you can help your brother. And when I say doctor, I don't necessarily mean a family doctor. I mean a psychologist who specializes in autism.

Edited August 1, 2008 by ruthiechan

[Jenamarie]

Is he recieving any sort of therapy right now? THAT, more than pills, is what helps people with Autism. Is he in the Special Ed. program at his school? That could really be beneficial to him, and it'd be completely free for your family.

ETA: And if it's too difficult to keep him away from the pulpit, then don't take him to church. In his condition, it's possible he's not getting anything out of it anyway, and all the stimulation around him may be overwhelming for him. He may not be capable of a Testimony right now, depending on how severe his Autism is.

Edited August 1, 2008 by Jenamarie

[Gel182]

I have a daughter with autism, although she is much younger than your brother (she's 4). I definetly understand how difficult it can be to have an autistic child/sibling at Church. In fact, Church can be a rather stressful three hours for us depending upon how she acts. In any event, I agree with previous posters that the situation can be explained to the Bob family and I'm sure they'll understand. Most people in our ward are familiar with my family's situation and I'm sure that those who are not wonder why our daughter is so poorly behaved - I don't blame them for thinking that because I've done the same thing before we had our daughter!

Autistic people pick up on much more than we give them credit for - so I believe that he should go and participate in Church. However, I'd definitely keep him away from the pulpit, even taking him outside, if necessary. Sometimes I spend Church outside, but for the short time my daughter sits still and behaves, it's worth it. Also, the advise to "pick your battles" is exactly right with autism.

[Moksha]

I have seen meetings totally disrupted by out of control behavior. If you accomodate it too much, people will leave.

[Vort]

You could just say, with a slightly haughty air, "My brother is autistic." If you use a British accent, people will assume you're being snooty, and will treat your brother with new respect, attributing his behavior to the fact that all artists act a bit strange at times.

[Gretchen]

The Sunday that my brother said that in Testimony meeting, one of the Bob children (they're not really children, the youngest is 9 or 10) asked me what he had against the Bob family.

I will talk to the Bishop about not making inappropriate remarks in church, thank you for suggesting that.

Any ideas on how to help my brother behave/feel the spirit?

[RachelleDrew]

My question is, who is trying to force him to get baptized? It's 100% his choice and no matter what his reasoning is for not getting baptized you need to quit nagging him about it. Some autistic children are oppositional-defiant as well and constantly telling him he needs to get baptized may only embolden him to act out at church.

Work on getting him help first. Is he seeing any doctors for his condition?

[FunkyTown]

The Sunday that my brother said that in Testimony meeting, one of the Bob children (they're not really children, the youngest is 9 or 10) asked me what he had against the Bob family.

I will talk to the Bishop about not making inappropriate remarks in church, thank you for suggesting that.

Any ideas on how to help my brother behave/feel the spirit?

Autism is a difficult thing to deal with. Many people who are autistic deal with things in a very different way. It could be he has felt the spirit but didn't know what it was.

It's difficult to make concrete discussions without knowing what type of autism he has. It sounds like it's high functioning autism. Are you sure it's autism and not Asperger's? When is he most happy?

Ultimately, I have an incredible amount of respect for what you have to deal with. It takes patience, strength and love to overcome it and coming on here to ask shows you do have that. :)

[WANDERER]

There is a picture book: All Cats Have Ausperger Syndrome (I'm thinking of the children of the family and in the church who are probably not quite able to understand things) and it certainly wouldn't hurt for grownups to read it ; ) .

[ruthiechan]

Asperger's is a high functioning form of autism, and seems to be the most common, but don't quote me on that.

It could be he has felt the Spirit but feels it differently from other people. He may not get the peaceful feeling, or a burning bossum (sp?). For him it could be more of a boot to the head, or a sudden greater understanding, or it could be a voice inside his mind using words.

[Gretchen]

He is not seeing any therapists as of now, and our parents are not convinced he needs meds right now. Their argument is that meds often make other problems worse. Are there any doctors here who can confirm or reject that? :confused:

[vegasbay]

I have Asperger's Syndrome, so I completely sympathize with your brother's behavior. While I understand (or at least try to) how hard it may be for you to deal with this behavior, take a step back and try to look at it from his perspective...

So he sees this Bob kid at school, right? Okay, no big deal. He belongs at school. That is his place. That is where your brother knows and interacts with him. Then all of a sudden out of nowhere he is at my church?!?! AWKWARD!!!!!! He doesn't belong at church, he doesn't go here - this completely changes everything!

You see, we are not born with the social graces and nuances that neurotypicals are bestowed with, so we have to create our own rules for those interactions. And since every situation is a little bit different, the corresponding rules for them change accordingly. This is why it is so hard for us to be in new situations - new situations mean new rules, and we don't know those rules until we have had significant time to adjust. It's like being dropped in the middle of a new ball game as the main player, and you have no idea what the point of the game is, how many balls are in play, or any of the other rules - how hard would that be? It's the same deal with new interactions.

So to bring this back to the point about Bob Jr, it seems to me that the most likely explanation of your brother's behavior is that he is simply trying to adapt the rules to that with which he is already familiar - you said he wanted to change church into a school, probably because he spends more time at school and is therefore more comfortable with it than church. He wants to kick the Bobs out because he does not know how to interact with them in church - it's a completely separate set of rules! What do I say, what do I do? Do I talk about school, about mutual friends, just leave them alone? Ignore them, say hello? With all these questions, it's much easier just to pretend that they're not there, or even better yet, to get them to stop going altogether.

As for the Pledge of Allegiance, well that goes back to school too. He probably says that very often in school, so it seems a natural thing to do while standing in front of an audience.

Autistics think in concrete, absolute, rule types of ways. Things have an order, a pattern, and rules. Perhaps your brother just does not know the rules. The more you discipline him, the harder it will be for him to learn them. Try role-playing and skits at home to reward appropriate church behavior and to teach him how to control inappropriate behavior.

As for baptism, drop it. Help him go to church, help him learn about the gospel, help him learn to like going to church, and it will all come in time. You said he is in YM - I would go to the YM the boys and the presidency, and explain to them what autism is and why your brother acts the way he does. Tell them that he needs support and friendship to be given out to him, because he does not know how to reach out for it himself.

Please, please, please get your brother some professional help. Therapy, occupational therapy, counseling, whatever. Just get him support and someone other than family that he can talk to.

What is your brother's passion? The one uniting thing of all Autism Spectrum disorders is a passion. Some people call it patterned behavior or an obsession, but for us it is a passion. It cannot be treated with medication, it has to be followed. Perhaps it is art, or math, or even something as simple as train schedules. Whatever it is, let him embrace it and spend all his free time on it. Nothing will make him happier.

Mostly do not force anything. The will of opposition is strong in autistics (for years, the best way to ensure that I would NOT do something was by asking me to do that very thing), so just be patient, understanding, strong, and most of all firm in your education of your brother, and he will come around. Remember that under the Atonement, he is innocent from that which he does not understand.

[ruthiechan]

Thank you Vegasbay. That was an AWESOME post!

[rampion]

My dad probably has asperger's (they didn't really diagnose things like that when he was a kid), and he has difficulty behaving appropriately at church too. He just doesn't get it. He goes every week. That has always been his routine since he was a child. But he doesn't pay attention to anything. He sits there and reads "Isaac Asimov's Commentary on the Bible" or he plays games on his various electronic devices. They don't ask him to teach anything. He's good as a financial clerk though. And he never misses a choir practice. That would be unthinkable. One bishop when we were in a new ward asked me what was wrong with my dad. I didn't know about asperger's then and didn't know what to tell him. But the more I think about it, the more I am sure that is what it is. Vegasbay, your post helped me identify more of it too. A few more pieces in the puzzle. Oh, and my dad refused to ever give me a blessing when asked. He baptized most of my siblings, but now refuses to use his priesthood. And keeping him away from the pulpit is a good idea too. The one time I heard him get up there, what he said was not a testimony. It wasn't awful, but he missed the point entirely. But he does participate in the music, especially if he is allowed to heckle the choir director.

I work with people with developmental disabilities, and I have written behavior programs for people with autism. One of them also loves the music. Maybe because it is something familiar, that fits into a routine, and helps to make sense of things. Music just might be a key here. We can also use music to help this client when he has inappropriate behaviors.

With disorders like autism, you take what you can get. And if he doesn't 'get' baptism, most likely he is one of the innocents who has no need of baptism anyway. Help him to understand what he can understand and wants to understand in ways that are meaningful to him, and don't push the things that he doesn't want to do.

Behavioral therapy is very helpful with autism. This involves teaching and practicing appropriate behaviors specific to situations. At an appropriate time, maybe talk about what is appropriate in church, and practice it, and discuss why some things are okay, and others are not a good idea. There aren't really medications for autism, but there are some that help with specific symptoms. Probably not for saying the wrong things in church though. A behavioral approach is probably your best bet for that.

[KrazyKay]

My husband has autism. He was diagnosed when he was 5 and yes it is tough at times. I really think my husband has aspergers instead of autism because he tends to adapt to new situations faster then one would expect someone with austim to do. The advice vegasboy and rampion both said are excellent.

One thing I've learned with dealing with my husband, do not push your brother to do anything. People with autism have strong rebellious natures. If they are pushed in one way, they will push 3 times harder in the other way. So don't say anything to your brother about getting baptized, just wait till he suddenly brings it up.

Another thing I learned is people with autism think completely different. They do not think in the same logical way that non-autistic's think. With my husband, we can be talking about one subject, then suddenly he would change the subject and I would have to sit there for a few minutes trying to figure the connection when there isn't a logical one, lol.

Like rampion said about his dad, maybe there is something that is your brother's passion that is quiet that he can do during sacrament. My husband is different in that he has no trouble with the 3 hour church block except he gets hungry - but that is totally different... my husband also has diabetes. However, when I was in young womens, there was a young man with autism who had a passion for astronomy. He always had a book about astronomy in his lap during sacrament meeting and then he would sit in the foyor for the other 2 hours just looking at the book as if the rest of the world didn't exist.

[breezygirl]

My husband has autism. He was diagnosed when he was 5 and yes it is tough at times. I really think my husband has aspergers instead of autism because he tends to adapt to new situations faster then one would expect someone with austim to do. .

Aspergers IS autism. Autism is a spectrum disorder meaning that not all people who have it will have the same abilities or disabilities. Think of it as a rainbow shape....some people will be down on the lower left side of the rainbow in some areas but clear over to the far right in others. Also Aspies seem to slide back and forth on that rainbow arch on any given day.

Aspergers is best described as a communication disorder. The aspie doesnt communicate well with others nor do they communicate well within themselves. Many aspies have an extraordinary ability to bear pain for that reason....they simply dont always recognize the sensation as pain.My husband is an aspie. He doesnt recognize many of his own emotions and feelings and cannot decipher what others are thinking or feeling very easily either. My Asperger husband cannot adapt to new situations rapidly at all and can be sent into a handflapping panic at a sudden change. Aspies are often gifted in many ways and usually have high IQ's.

[breezygirl]

"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin"

I love this quote at the end of your reply Vegasbay!. I think its probably more accurate than anybody knows. I have tested for Aspergers a couple of times now and my tests came back as "neuroquirky"

which was their fancy way of explaining to me that after 25 years of living with an Aspie who is pretty extreme in many of his traits, I have adapted and have coped by adopting/mimicing asperger like traits. When I take the tests after I have been away from my husband for a week or two I test neurotypical. One of the testers told me she sees this a lot in the spouses of Asperger people and she called it being "aspergated" LOL

[tefor]

Being Asperger myself, and having 12-year-old twins on the spectrum (an AS son and a low-functioning daughter), I have become extremely familiar with the various elements of autism. At times I find myself envying my daughter. Even though she has her screaming fits and becomes extremely agitated and frustrated, she is continuously "in the moment". On the other hand, my son and myself are both aware that we are different, and we experience all sorts of philosophical dilemmas, especially in the context of the LDS church: we will never be entirely self-reliant, so how does that fit with the emphasis on self-reliance? To what extent will we be held accountable for the sometimes serious errors of judgment that we commit due to the difficulties in thinking clearly? Will we be judged by the same criteria as our more "normal" peers? How do our limitations affect our agency and ability "to act, and not to be acted upon"? (I find that I am frequently being "acted upon" by my autism.)

These questions and concerns have caused me a great deal of anxiety and anguish, and at times it is all I can do to "be still, and know that [He is] God. Even after writing an article for Meridian Magazine on the subject (accessible here), I find myself wondering if the progress that I am (presumably) making is acceptable to the Lord. Thankfully, youth leaders are far more understanding and patient toward people on the spectrum today than they were when I was my son's age.