Clueless in New England

[Brenle]

After reading so many posts about autism, I think I've come to the right place.

I have a 5 year old nephew with autism, spectrum disorder. And that's about all his parents have told us. Oh, and that he's in a classroom with only autistic children. Our entire family really needs to know what we can do to communicate with him and what not to do that may trigger a meltdown.

Obviously we can see how he behaves and reacts to his surroundings and us. But we need guidance, information. We've asked the parents for help and they tell us what we're doing is fine. Well, we know it's not by the reaction we get/don't get from him.

Any suggestions, advice is so needed and appreciated. I know there are books we can read and we have done reading on line, but what personal advice can you give us?

 

[bookwormde]

Educating yourself about Autism is by far the best thing that you can do. Without knowing were he is on the spectrum it is a little hard to give good ideas. I guess I will ask a few questions, what level of communication skills (none, PECS, delayed verbal, on level verbal, etc) does he have, what about his innate societal social skills, Does he present a significantly different Executive Function neurovariations, does he exhibit significant auditory processing differential characteristics (does not react to react/remembers verbal input as would be expected for an average (neurotypical) child) are there any cognitive deficits or other physiological issues that have an impact. While Autism spectrum genetics are relatively the same all the way from classic Autism to Aspergers, the impact on the individual varies greatly depending on the above factors, the level of understanding and support from family educators and clinicians.

I if he is significantly communicative and relatively cognitively in tact then I would recommend as a first read Tony Attwood’s “The complete Guide to Aspergers” C2007 available on Amazon for about $25. While this was written primarily for high functioning Autism and Aspergers, it can also be valuable for other portions of the spectrum in differentiating between what strictly an Autism characteristic and what other issues or autism characteristics are heightened by other contributing factors.

bookwormde

 

[Schmeck]

I'm unrecommending Tony Attwood, unless you need a good nap! It's very dry, technical reading, not much in the way of "helpful hints", very repetitive, and he starts the whole process with a fake scenario.

As a technical read, I'm sure its fantastic, but I found it useless.

Brenle, try checking at your local library for books, magazines, video, and support groups. It sounds like you are in contact with your nephew quite a bit. You can gain a lot of insight by just watching him at his activities, whatever they may be. Take cues from how his parents act with him. Bring all the patience you have with you. Things will have to progress at his speed.

 

[mechurchlady]

http://books.google.com/books?id=Zw...+Guide+to+Aspergers&ei=k6p9San1JZHGlQSB5uDaBg

Check out the book on Google books first and see what you think. Pages are missing of course since it is a preview but you do get the gist of the book and whether you would like to buy it and bookmark it and use it for reference.

Bookworm is one smart dude when it comes to spectrum stuff though he is a bit technical. His brain is very technical so for NTs they may prefer a bit of fluff or an easy read but the books he has suggested required my putting down my online boards and games then setting there and concentrating. Just like in college but at least I am learning stuff from the books he suggests.

WAR yep there are various opinions on neurovariants and brain disorders, miswiring, and other stuff. People can be stuck in the past or they can hold onto an idea steadfast. dookworm tends to lean toward facts and the newest stuff out there that is scientifically proven. I listen to him as he studies this stuff and does not listen to what was on the news or Oprah.

As bookworm said neurovariants vary from person to person. They may have birth defects not related to the neurovariations. They may have other things like SID and HSD which are sensory issues, OCD, ADD, bipolar, and a slew of things that any kid might be born with. Studying so you understand is very good of you as too many families break apart when people shun disabled kids and adults. It helps when the family works together.

I have been reading parts of the book and I like that he uses a fictional child. No two kids are alike so a fictional child can be better for examples. I read the ending about the child with aspergers and his career. I like that bit of hope that Atwood instills in people.

 

[BeckyScott]

We've asked the parents for help and they tell us what we're doing is fine. Well, we know it's not by the reaction we get/don't get from him.

Just because he's not reacting the way you think, doesn't mean you're not doing the right thing. If that makes any sense. The fact that you're hanging around and trying to learn gives you bonus points in my book.

Your best resource is probably his parents. (so long as they are parents who also read and try to keep informed, instead of burying their heads in the sand) It sounds like you've read a lot of general information. But you'll get to a point pretty quickly where each child with autism is going to differ. ("If you've met one kid with autism, you've met one kid with autism") In that way, general info will only get you so far, you have to learn about your nephew specifically.

I just wanted to chime in to say, if it is at all possible, offer to babysit. We all want people we trust, who will babysit. It's very hard to find. We only have one person who we can really trust to watch the boys, and that's hard, hard to have a life, sometimes overwhelming to have it all put on your shoulders 24/7. Offer to babysit.

 

[KirstenB]

Everyone has made good points. It would help to know if your nephew craves sensory input (does he touch everything, maybe put things in his mouth, etc), or is everything too loud, too scratchy, etc?

Is he verbal?

Without knowing anything about him, if I were meeting him for the first time, I'd just adapt to his interests. If he's playing with dinosaurs, I'd grab one out of the bucket, and try to interact with his dinosaur. I'd ask his dinosaur what his favorite book or movie was. Silly stuff, I know. But just reach him and love him on his level. Let him be the leader, and you follow his example.

 

[bookwormde]

I have recommended this Atwood book to many family members, clinicians and educators with probably by this more than 100 have read it and all found it very informative and allowed them to “get it” better than any other source they have read.
If you want a dry book read the Oasis guide to Aspergers (very dated). There is a lot of information out on the Internet but much of it is “old school, dated or just flat out incorrect so be careful. Tony Atwood is regularly referenced and highly regarded by the vast majority of clinicians as the leading and most up to date authority on the subject, he does not get into a lot of “fluff” but the real world insights he provides are invaluable. I must say however that even though this book is only 2 years old it is also becoming dated, as I noticed when I attended a seminar he spoke at in November. There are those who find his “theory of Autism spectrum” does not align with their views so for them it has little value.

bookwormde

 

[Brenle]

Educating yourself about Autism is by far the best thing that you can do. Without knowing were he is on the spectrum it is a little hard to give good ideas. I guess I will ask a few questions, what level of communication skills (none, PECS, delayed verbal, on level verbal, etc) does he have, what about his innate societal social skills, Does he present a significantly different Executive Function neurovariations, does he exhibit significant auditory processing differential characteristics (does not react to react/remembers verbal input as would be expected for an average (neurotypical) child) are there any cognitive deficits or other physiological issues that have an impact. While Autism spectrum genetics are relatively the same all the way from classic Autism to Aspergers, the impact on the individual varies greatly depending on the above factors, the level of understanding and support from family educators and clinicians.

I if he is significantly communicative and relatively cognitively in tact then I would recommend as a first read Tony Attwood’s “The complete Guide to Aspergers” C2007 available on Amazon for about $25. While this was written primarily for high functioning Autism and Aspergers, it can also be valuable for other portions of the spectrum in differentiating between what strictly an Autism characteristic and what other issues or autism characteristics are heightened by other contributing factors.

bookwormde

Thank you SO much for responding. Here are the answers to your questions and more info:


He does use the PECS system. I've observed that he doesn't like loud sounds. I can say his name and he doesn't turn around, look at me. (His hearing is normal) I can't communicate with him. The only time he'll say something to me is if I'm in the kitchen and he wants a drink. He'll say milk - which can mean any drink. And when prompted by his parents, he says goodbye and kisses us on the cheek. And I forgot to mention, we've been told it's Aspergers. I have seen severely autistic kids. I don't believe he's one of them. He also does the flapping of the hands

 

[Brenle]

I'm unrecommending Tony Attwood, unless you need a good nap! It's very dry, technical reading, not much in the way of "helpful hints", very repetitive, and he starts the whole process with a fake scenario.

As a technical read, I'm sure its fantastic, but I found it useless.

Brenle, try checking at your local library for books, magazines, video, and support groups. It sounds like you are in contact with your nephew quite a bit. You can gain a lot of insight by just watching him at his activities, whatever they may be. Take cues from how his parents act with him. Bring all the patience you have with you. Things will have to progress at his speed.

Trust me I'm patient. It's just that interacting with him is almost impossible. He is either uninterested or he becomes upset. His parents are of no help. They give us no guidance. Thanks for taking the time to post. And I consider the library a valuable resource!!

 

[Brenle]

http://books.google.com/books?id=Zw...+Guide+to+Aspergers&ei=k6p9San1JZHGlQSB5uDaBg

Check out the book on Google books first and see what you think. Pages are missing of course since it is a preview but you do get the gist of the book and whether you would like to buy it and bookmark it and use it for reference.

Bookworm is one smart dude when it comes to spectrum stuff though he is a bit technical. His brain is very technical so for NTs they may prefer a bit of fluff or an easy read but the books he has suggested required my putting down my online boards and games then setting there and concentrating. Just like in college but at least I am learning stuff from the books he suggests.

WAR yep there are various opinions on neurovariants and brain disorders, miswiring, and other stuff. People can be stuck in the past or they can hold onto an idea steadfast. dookworm tends to lean toward facts and the newest stuff out there that is scientifically proven. I listen to him as he studies this stuff and does not listen to what was on the news or Oprah.

As bookworm said neurovariants vary from person to person. They may have birth defects not related to the neurovariations. They may have other things like SID and HSD which are sensory issues, OCD, ADD, bipolar, and a slew of things that any kid might be born with. Studying so you understand is very good of you as too many families break apart when people shun disabled kids and adults. It helps when the family works together.

I have been reading parts of the book and I like that he uses a fictional child. No two kids are alike so a fictional child can be better for examples. I read the ending about the child with aspergers and his career. I like that bit of hope that Atwood instills in people.

Thanks for the link and the insight. I've tried to get info from the parents but they don't tell us much. They keep saying "it's not a secret he has austism" but everything else is. Like I think he's on meds, but not sure. That's why I'm trying to get info from other parents/educators that are dealing with this on a daily basis.

 

[bookwormde]

As others have said if he has a special area of interest see if he will let you do some parallel play with him , just be aware that at his age everything will likely have to be done correctly (his way). Get briefed by his parents of any sensory issues so you will not do anything related to these that make him “uncomfortable”. The hardest thing is to let him be who he is and not to try to be “social” with him (including making eye contact) as your nuerotypical mind and social standards compels you to. For neurotypicals this take some practice and education and initially is very “uncomfortable”. Often once he “warms up” to you and realized that you understand him and will for the most part allow him to live in his world you are likely to find him in your lap more often than not so be ready.

Many times parents feel isolated, so becoming informed may help there also

bookwormde

 

[Brenle]

Just because he's not reacting the way you think, doesn't mean you're not doing the right thing. If that makes any sense. The fact that you're hanging around and trying to learn gives you bonus points in my book.

Your best resource is probably his parents. (so long as they are parents who also read and try to keep informed, instead of burying their heads in the sand) It sounds like you've read a lot of general information. But you'll get to a point pretty quickly where each child with autism is going to differ. ("If you've met one kid with autism, you've met one kid with autism") In that way, general info will only get you so far, you have to learn about your nephew specifically.

I just wanted to chime in to say, if it is at all possible, offer to babysit. We all want people we trust, who will babysit. It's very hard to find. We only have one person who we can really trust to watch the boys, and that's hard, hard to have a life, sometimes overwhelming to have it all put on your shoulders 24/7. Offer to babysit.

BeckyScott, thanks for taking the time to respond. I know I'm doing the wrong thing when he gets that look of distress and walks away flapping his arms. I have asked the parents, one of whom is my own sibling, and get little to no info.

I know they have "No Life." Truly, they would never consider to have anyone other than my parents babysit for him. And it's already a HUGE burden on them. But that's a whoooole other story. (And they're just as uneducated as we are about helping him)

When my kids, husband, other siblings and family are with my nephew he seems to be distraught that we're there. He's out of his comfort zone and that bothers him physically and emotionally. So what do we do? Try to talk to him/engage him in activity anywa? Or leave him alone to come around to us - which NEVER happens. Even if I pick up a toy I know he likes, he just comes over, takes it from me and off he goes.

Everyone has made good points. It would help to know if your nephew craves sensory input (does he touch everything, maybe put things in his mouth, etc), or is everything too loud, too scratchy, etc?

Is he verbal?

Without knowing anything about him, if I were meeting him for the first time, I'd just adapt to his interests. If he's playing with dinosaurs, I'd grab one out of the bucket, and try to interact with his dinosaur. I'd ask his dinosaur what his favorite book or movie was. Silly stuff, I know. But just reach him and love him on his level. Let him be the leader, and you follow his example.

Hi Kristen,

He is oral. Puts everything in his mouth. Licks the TV, his bus. I know he has "chewies" that he's never without. I try to play with him but he will go to another room or take the toy and leave. If I push it, he starts flapping his arms and starts making whimpering sounds.

AS far as being verbal. Hardly. He'll say words like milk, Elmo, eyes, mouth. Nothing in a full sentence. But if you ask the parents they'll tell you oh, he can talk. He says full sentences. I ask him a question and he answers it completely. I'm with them once a week, and have taken vacations with them, and in all the years I've been around him, this has never happened. I think his parents see him differently and believe he's capable of more than he is. Even my parents, who watch him every day after school and on some weekends, don't see it either.

 

[Brenle]

As others have said if he has a special area of interest see if he will let you do some parallel play with him , just be aware that at his age everything will likely have to be done correctly (his way). Get briefed by his parents of any sensory issues so you will not do anything related to these that make him “uncomfortable”. The hardest thing is to let him be who he is and not to try to be “social” with him (including making eye contact) as your nuerotypical mind and social standards compels you to. For neurotypicals this take some practice and education and initially is very “uncomfortable”. Often once he “warms up” to you and realized that you understand him and will for the most part allow him to live in his world you are likely to find him in your lap more often than not so be ready.

Many times parents feel isolated, so becoming informed may help there also

bookwormde

Hello bookwormde,

Thanks for the book recommendation.

You'e touched upon a huge problem. I have asked the parents about what makes him uncomfortable and I get no response - literally. They change the subject and tell me what I'm doing is fine. I'm a grown women with kids of my own. I know what I'm doing is NOT fine. I can see he's distressed by his actions.

When I see him I always go right up to him and say hello, say his name, and ask him what he's doing. And I've tried sitting quietly around him waiting for him to come over. It's beyond frustrating trying to get the parents' help - that's why I've come to this thread on the DISboards. And I appreciate everyone's help and advice.

 

[bookwormde]

Good luck and thanks for taking the time and effort. As you will learn your social greeting is a big red flag to him that you do not yet understand him. Also you will only be initially successful when there is not a “group” of people around. It takes time on both sides to get comfortable with the situations



bookwormde

 

[KirstenB]

Okay, you've given us a good picture of him. My 3 yr old younger dd is a chewer too. She'll chew on her shirt, if nothing else!!

He does sound pretty withdrawn. Even so, if he takes the toy and leaves the room, I'd still follow him. If he goes into another room, pick up a toy and play so he can hear you, right outside that room. If he has a favorite movie, sit near him when he watches it. Try lots of non-verbal contact initially. If he has a favorite food, and mom and dad are okay with it, bring him that food when you visit. This will take a long time, so be really patient. Do not give up. If something doesn't work today, it may result in a breakthrough tomorrow.

I think it's natural that his parents see him as higher functioning than the rest of you do. That means they adore him, and are optimistic for his future. Yes they're in denial, but that may be what allows them to wake up and smile at him every single day. Try not to judge them too much on that.

Finally, autism can be very isolating for the immediate family. It's a complex condition. Our younger dd has ASD, and I often don't understand what she is thinking. It can also be overwhelming to try to describe your child to others, even close family. Again, try not to get frustrated. They're doing the best they can. Keep trying with them too. If they see you consistently really reaching out to your nephew, they may slowly share more information with you.

Thanks for caring. This is likely to be a marathon, not a sprint, to put it in running terms. It may seem to take forever for things to progress, but I can promise you it will be worth it.

 

[Brightsy]

First I want to say "Kudos!" to you for coming and asking for help! It's wonderful when the extended family really tries to understand and learn about the kids in their lives, whether they are on the spectrum or not.

About the loud sounds, I've found that my son (high functioning autism) does well w/ noise reduction earmuffs (like they use on a hunting range). The ones we have can actually be adjusted for different decibel levels. We got them at Walmart (in the sports and hunting dept.).

The folks here have given you good advice. I'd watch your nephew when he's with you (and it sounds like you've been doing that already). It'll take some experimentation and loads of patience on your end. Take your cues from your nephew. (And again, it sounds like you're trying that.) My son doesn't like people to sing along with the tv or radio but if I'm patient and I just start with a word here, a chorus there I can sometimes do it. If he says "stop" I stop. (Just a small example)

The books are all a good place to start, and being around the child adds more the experience. Just keep trying and be super patient. The world can be a weird place even for neurotypical kids, but for these kids on the spectrum that weirdness is at a whole other level.

As I told my older son's friends when they asked why my younger son is so... "Weird" I told them...
"HE's not weird, he's just a Mac stuck in a PC world."

 

[BeckyScott]

When DS was younger and not as verbal, I used to do the "show me" a whole lot. He wasn't saying the words or I couldn't understand him, and I'd ask him to show me what he wanted.

That worked pretty well much of the time. If he says "milk" for any drink, take him to the fridge and ask him to show you what he wants. If there's something wrong, ask him to show you. So maybe he takes you to the tv, at least you have a starting point, is the tv too loud, is it on the wrong channel, did he see something on the tv... it's some detective work, but at least you have a starting point. (this also helps him work on his distal pointing skill, which is a bonus)

Now, we weren't doing PECs with DS, so that made a difference, we didn't have that to fall back on with the "show me".

He is probably more comfortable with parallel play. Instead of trying to interact directly with him, sit close by and play by yourself, too, maybe something similar to what he's playing with, just hang out there for a while. He might engage, he might not. It might take many many times with little progress.

Can he read? He's a little young but kids on the spectrum sometimes read early. You can go around the house with post-its and label everything. That's a good time. Try it when he's in the room and see if he notices what you're doing.

Edited to add: I remember seeing an interview with Jim Carrey, about Jenny McCarthy's son, how it was frustrating to him at first because Evan wouldn't interact with him. He does now, but it took a while. And Jim Carrey being all goofy and funny as he is, and Evan not being the least bit interested. And you're talking Jim Carrey here, that level of crazy entertaining, which I know I couldn't possibly match that... hopefully that will make you feel a little better.

 

[Brenle]

Good luck and thanks for taking the time and effort. As you will learn your social greeting is a big red flag to him that you do not yet understand him. Also you will only be initially successful when there is not a “group” of people around. It takes time on both sides to get comfortable with the situations



bookwormde

Thanks for telling me it's a red flag to him that I don't understand him, because I don't and never thought that HE knew that. So should I just look him in the eye and say hello? Forget asking questions?

Okay, you've given us a good picture of him. My 3 yr old younger dd is a chewer too. She'll chew on her shirt, if nothing else!!

He does sound pretty withdrawn. Even so, if he takes the toy and leaves the room, I'd still follow him. If he goes into another room, pick up a toy and play so he can hear you, right outside that room. If he has a favorite movie, sit near him when he watches it. Try lots of non-verbal contact initially. If he has a favorite food, and mom and dad are okay with it, bring him that food when you visit. This will take a long time, so be really patient. Do not give up. If something doesn't work today, it may result in a breakthrough tomorrow.

I think it's natural that his parents see him as higher functioning than the rest of you do. That means they adore him, and are optimistic for his future. Yes they're in denial, but that may be what allows them to wake up and smile at him every single day. Try not to judge them too much on that.

Finally, autism can be very isolating for the immediate family. It's a complex condition. Our younger dd has ASD, and I often don't understand what she is thinking. It can also be overwhelming to try to describe your child to others, even close family. Again, try not to get frustrated. They're doing the best they can. Keep trying with them too. If they see you consistently really reaching out to your nephew, they may slowly share more information with you.

Thanks for caring. This is likely to be a marathon, not a sprint, to put it in running terms. It may seem to take forever for things to progress, but I can promise you it will be worth it.

Hi Kirsten,

I try to be easy on the parents. But he was diagnosed 2 years ago. And after 2 years of going it alone after repeated requests for insight and guidance, I have no confidence in getting any help from them.

And I see what they go through when I'm with them and my heart aches for them all. I can't imagine handling that 24/7. Not to mention he esacped early one morning. Meaning he pulled the screen out of the front door and was found in the middle of his street playing in a puddle.

I always feel like we're in a catch-22 with him. I don't want to ignore him, yet I don't want to set him off, either.

First I want to say "Kudos!" to you for coming and asking for help! It's wonderful when the extended family really tries to understand and learn about the kids in their lives, whether they are on the spectrum or not.

About the loud sounds, I've found that my son (high functioning autism) does well w/ noise reduction earmuffs (like they use on a hunting range). The ones we have can actually be adjusted for different decibel levels. We got them at Walmart (in the sports and hunting dept.).

The folks here have given you good advice. I'd watch your nephew when he's with you (and it sounds like you've been doing that already). It'll take some experimentation and loads of patience on your end. Take your cues from your nephew. (And again, it sounds like you're trying that.) My son doesn't like people to sing along with the tv or radio but if I'm patient and I just start with a word here, a chorus there I can sometimes do it. If he says "stop" I stop. (Just a small example)

The books are all a good place to start, and being around the child adds more the experience. Just keep trying and be super patient. The world can be a weird place even for neurotypical kids, but for these kids on the spectrum that weirdness is at a whole other level.

As I told my older son's friends when they asked why my younger son is so... "Weird" I told them...
"HE's not weird, he's just a Mac stuck in a PC world."

Brightsy,
Thanks for the info about the ear muffs. I'll mention it to his parents and see where it goes. My niece, his sister, has to deal with friends calling him strange as well. But she tells him he has autism and they stop. (She's 7)

When DS was younger and not as verbal, I used to do the "show me" a whole lot. He wasn't saying the words or I couldn't understand him, and I'd ask him to show me what he wanted.

That worked pretty well much of the time. If he says "milk" for any drink, take him to the fridge and ask him to show you what he wants. If there's something wrong, ask him to show you. So maybe he takes you to the tv, at least you have a starting point, is the tv too loud, is it on the wrong channel, did he see something on the tv... it's some detective work, but at least you have a starting point. (this also helps him work on his distal pointing skill, which is a bonus)

Now, we weren't doing PECs with DS, so that made a difference, we didn't have that to fall back on with the "show me".

He is probably more comfortable with parallel play. Instead of trying to interact directly with him, sit close by and play by yourself, too, maybe something similar to what he's playing with, just hang out there for a while. He might engage, he might not. It might take many many times with little progress.

Can he read? He's a little young but kids on the spectrum sometimes read early. You can go around the house with post-its and label everything. That's a good time. Try it when he's in the room and see if he notices what you're doing.

Edited to add: I remember seeing an interview with Jim Carrey, about Jenny McCarthy's son, how it was frustrating to him at first because Evan wouldn't interact with him. He does now, but it took a while. And Jim Carrey being all goofy and funny as he is, and Evan not being the least bit interested. And you're talking Jim Carrey here, that level of crazy entertaining, which I know I couldn't possibly match that... hopefully that will make you feel a little better.

Great advice. I'll try sitting next to him and play on my own and see where it goes.

Hi BeckyScott,

Can he read? I don't know. I don't believe so. The PECS cards at my parents don't have words on them, just the pictures. And thank you so much for trying to help. Honestly, if I went around the house putting up post-it notes, his parents wouldn't like it. They'd be offended. That's just how they are right now.


And to everyone who has posted, thank you again for taking the time and shedding some light in an otherwise darkened room.

 

[bookwormde]

No greeting at all generally, since it is a social event. No need to say goodbye either. Sometimes a half wave is OK. Looking in the eye is typically an extreme anxiety generator. Believe me he knows you are there.

boowkormde

 

[mechurchlady]

It is sort of like the force fields in Star Trek. The more you push the stronger the force field. It is like chasing butterflies and then laying down to sleep. You wake up and find butterflies all over you. Resistance is futile. The kid may be a future rocket scientist but it will take a lot of time to sit there and just ignore him. Also do not forget to read the boards here for some insight like the lady who sat for days just signing the word ball and playing with her daughter.

As for the parents being in denial that is possible. Another possibility is that they do not know about this board. The parents may not have a lot of knowledge in dealing with an autistic child. Maybe they were told the diagnosis then what the school can do and what they can do but not a lot of the other stuff like the tips the people here share. Some people like myself and bookwormde go out and hunt down all the information they can find while others do not.