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Old 06-21-2012, 10:12 AM
 
Location: Where the sun always shines..
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I have found Great success in using RDI with my some of my students, in correlation with students-kids on the spectrum may withdraw and focus on obsessions. In this way they can wrap their thoughts around something they can feel competent in without challenge, or fear. Underdevelopment of skills creates isolation via withdrawal or can manifest inadequate compensation tactics such as memorizing what to do when “this “happens. How much can anyone memorize to enable them to interact with an unpredictable partner or the ever changing world?
To me, RDI is like a second chance to understand daily life events, and start collecting successful experiences to reference for future challenges. When a person is under the wing of a dedicated and trusted guide they can change and grow amazingly without fear.

“RDI” methods have been proven successful with countless families of varied cultures, ages and relationships around the globe. This program can benefit the parent/ child relationship as well as the entire family by fine tuning the guidance role for parents. As well, this program can be a catalyst to any adult living at home or independently. The awareness you acquire and the stumbling blocks you face are liberating, and will manifest in a richer quality of life that can further enable close relationships and a successful future for your son.

Good luck!
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Old 07-20-2012, 04:24 PM
 
Location: The Netherlands
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My nephew (age 4.5) was diagnosed with autism today. I don't know anything about this disorder so now I'm trying to get informed and I must say it's very interesting reading threads like these, I recognise a lot of your experiences. My nephew has a severe form of classic autism. The team of psychologists and psychiatrists that observed him say that it is absolutely out of the question that he will ever go to a regular school or have a normal life like other children. He looks healthy on the outside but he has a lot of other medical problems as well, which is why his doctors didn't immediately consider autism. At first they thought he had Smith-Magenis syndrome but after a chromosome test that turned out not to be the case. A while ago he was in the hospital again for a check-up and he had a huge tantrum right in front of the doctor (he has tantrums a lot which seem to come out of nowhere) so the doctor arranged an emergency appointment with a child psychiatrist and that is how the process to his diagnosis started. He doesn't speak much and is 1.5 year behind in his speech development. He can't pronounce certain letters and starts almost every word with an H (e.g. water becomes hater). As I said, he has other medical problems as well so it's hard to determine which are independent of his autism and which are caused by it. For example, he is deaf on one ear and audily impaired on the other ear so that might also explain his speech delay. Anyway, we have used pictograms for a long time now and that seems to work reasonably well. Other traits that are typical for him - and I don't know if it's just him or if it has to do with autism - are:
- He can't share with others. He can play next to other children but he can't play with them. He has his own toys and doesn't want others to play with them. If they do, he gets very upset and it's almost impossible to calm him down.
- He doesn't talk to people unless he wants to. Generally, he doesn't talk to strangers or people he rarely sees at all. But even with his own parents and brother, if they ask him something he will often not reply. People sometimes think he's rude because he doesn't greet them back or say "thank you" when they give him something but I don't think he even realizes that that's what he's supposed to do. However, there are other times when he won't stop talking (but only around people he knows very well).
- Despite his delay in development, he is quite intelligent. He scored 123 on an IQ test and he wasn't even that focused during the test.
- He has severe problems with eating (I don't think this is related to autism but who knows). He just doesn't eat, at all. He's had this issue from the moment he was born but the doctors didn't take it very seriously at first, until he was a few months old and ended up in the hospital with malnutrition. Since then he was fed through a nasogastric feeding tube until he was 2 years old. From then until now he gets a bottle with liquid nutrition three times a day. It's the only thing he will "eat". It's a complete mystery why he won't eat. He once told my sister that he doesn't like the feeling of food in his mouth. Drinking is not a problem although he doesn't drink much apart from his nutrition bottles.
- When he gets angry or frustrated, he starts hurting himself. Sometimes he bangs his head against the wall or table. He also throws things at people.
- He doesn't go anywhere alone. If my sister walks around the house, he'll walk right behind her. If she goes to the toilet, he'll wait in front of the door until she's done.
- He is extremely possessive of his mother (my sister). If her husband tries to give her a hug, he'll push him away. He always wants to be close to her and gets jealous if his older brother gets his mother's attention instead of him.
- He doesn't respond at all to other people's emotions. For example, when you pretend to cry to get him to do something, it just doesn't affect him. When you get angry, he usually just stares at you. He doesn't show much emotion himself either, apart from happiness or anger.
- He can go from one extreme (very happy) to the other extreme (very angry) in a split second for no apparent reason. His behaviour is very unpredictable.

I wonder if anyone recognises some of the symptoms he has as being typical of atheism or are they not that common?

Another question: his psychiatrist proposed medication but my sister and her husband are very reluctant about this because they feel my nephew is too young. Would you give your child medication to alter his behaviour at that age?
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Old 07-20-2012, 07:27 PM
 
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Originally Posted by LindavG View Post
My nephew (age 4.5) was diagnosed with autism today. I don't know anything about this disorder so now I'm trying to get informed and I must say it's very interesting reading threads like these, I recognise a lot of your experiences. My nephew has a severe form of classic autism.

Somehow, I don't necessarily see severe classic autism, but anything is possible

The team of psychologists and psychiatrists that observed him say that it is absolutely out of the question that he will ever go to a regular school or have a normal life like other children.

Don't let the docs limit him at 4.5 years old. There are kids who were quite severe, even non-verbal who learned through the use of technology.

Jeremy Sicile-Kira did not get his communication device until he was 18. He graduated high school, first with a special ed diploma, then stayed until he was 21 and got his regular diploma. He is now going to college. He uses power point and his computer to communicate.


Jeremy Sicile-Kira's High School Commencement Speech - YouTube

Carly Fleishman was diagnosed with severe autism at 2. They told her parents she would never develop beyond the intellectual abilities of a small child. Today she communicates through her computer. Her first words typed on her parent's laptop were "Help Teeth Hurt."



He looks healthy on the outside but he has a lot of other medical problems as well, which is why his doctors didn't immediately consider autism. At first they thought he had Smith-Magenis syndrome but after a chromosome test that turned out not to be the case.

His medical problems may be physical and not the result of autism at all. He may, of course also have some physical problems that stem from sensory processing disorder which is often co-morbid with autism.

A while ago he was in the hospital again for a check-up and he had a huge tantrum right in front of the doctor (he has tantrums a lot which seem to come out of nowhere) so the doctor arranged an emergency appointment with a child psychiatrist and that is how the process to his diagnosis started. He doesn't speak much and is 1.5 year behind in his speech development. He can't pronounce certain letters and starts almost every word with an H (e.g. water becomes hater).

Speech problems are common in autism, but they can also be independent of it. I hope you have a good speech therapist who can work with him. For my grandson, his words at 8 are still unclear sometimes, but they are getting better all the time. His Ipad and his VB-ABA therapists have made all the difference.

As I said, he has other medical problems as well so it's hard to determine which are independent of his autism and which are caused by it. For example, he is deaf on one ear and audily impaired on the other ear so that might also explain his speech delay. Anyway, we have used pictograms for a long time now and that seems to work reasonably well.

PECS (pictures) are a good thing. Hopefully they can help with his tantrums. Use them to give order to his day as well as just for communicating needs and wants.



Other traits that are typical for him - and I don't know if it's just him or if it has to do with autism - are:
- He can't share with others. He can play next to other children but he can't play with them. He has his own toys and doesn't want others to play with them. If they do, he gets very upset and it's almost impossible to calm him down.

Possibly autistic, but ABA can help teach him how to share.


- He doesn't talk to people unless he wants to. Generally, he doesn't talk to strangers or people he rarely sees at all. But even with his own parents and brother, if they ask him something he will often not reply. People sometimes think he's rude because he doesn't greet them back or say "thank you" when they give him something but I don't think he even realizes that that's what he's supposed to do. However, there are other times when he won't stop talking (but only around people he knows very well).

Very common for autistic people. This is often due to anxiety around unfamiliar and unpredictable settings and people. It can also be a problem in terms of processing verbal information.

- Despite his delay in development, he is quite intelligent. He scored 123 on an IQ test and he wasn't even that focused during the test.

Many autistic people are very intelligent. The autistic spectrum encompasses the same range as the normal population in terms of intelligence.

- He has severe problems with eating (I don't think this is related to autism but who knows). He just doesn't eat, at all. He's had this issue from the moment he was born but the doctors didn't take it very seriously at first, until he was a few months old and ended up in the hospital with malnutrition. Since then he was fed through a nasogastric feeding tube until he was 2 years old. From then until now he gets a bottle with liquid nutrition three times a day. It's the only thing he will "eat". It's a complete mystery why he won't eat. He once told my sister that he doesn't like the feeling of food in his mouth. Drinking is not a problem although he doesn't drink much apart from his nutrition bottles.

This is likely to be a sensory issue. My grandson could not tell when he was full. Many autistic people have very restrictive diets because they have issues with tastes and textures. Feeding therapy and Occupational therapy can help with this.

- When he gets angry or frustrated, he starts hurting himself. Sometimes he bangs his head against the wall or table. He also throws things at people.

This is somewhat common though not every autistic child does it. My grandson never did the self-hurting, though he did throw things around when he was frustrated or angry. Again, get him into ABA, use whatever means you must to keep him from self-injuring.

- He doesn't go anywhere alone. If my sister walks around the house, he'll walk right behind her. If she goes to the toilet, he'll wait in front of the door until she's done.

He's 4.5 physically, but he may still be 2 mentally. This is a common toddler behavior even in normal kids. He may be anxious that she won't come back as he may not yet have a real sense of object permanence.


- He is extremely possessive of his mother (my sister). If her husband tries to give her a hug, he'll push him away. He always wants to be close to her and gets jealous if his older brother gets his mother's attention instead of him.
- He doesn't respond at all to other people's emotions. For example, when you pretend to cry to get him to do something, it just doesn't affect him. When you get angry, he usually just stares at you. He doesn't show much emotion himself either, apart from happiness or anger.
- He can go from one extreme (very happy) to the other extreme (very angry) in a split second for no apparent reason. His behaviour is very unpredictable.

These may be personality or autism issues. It is hard to tell.

I wonder if anyone recognises some of the symptoms he has as being typical of autism or are they not that common?

Another question: his psychiatrist proposed medication but my sister and her husband are very reluctant about this because they feel my nephew is too young. Would you give your child medication to alter his behaviour at that age?
This would depend upon what medication they were recommending and what symptoms it was supposed to treat. In general, there is no psychiatric medication for autism and you have to be very careful because there are many side effects. Read Temple Grandin's Book The Way I See It for a good view about medications. I too would be reluctant at this age.

This is not the best site for information about autism. We have some knowledgeable people here, but there are much better resources out there.

Books to start with:
Engaging Autism by Stanley Greenspan
The RDI Book by Steven Gutstein
Let Me Hear Your Voice by Catherine Maurice
Educate Toward Recovery: Turning the Tables on Autism by Robert Schramm

NOTE: My grandson was not interacting with the world at all at 18 months of age and was dxed and got 5 hours of therapy a week from early intervention and 10 hours a week of ABA paid privately. He is currently 8 years old and mainstreamed in 2nd grade (a year behind where he would be if we went by his age).

Here's the video I made of my grandson. It is a little out of date as he was 6 when this ended.
What Autism Looks Like pictures by toto053 - Photobucket
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Old 07-20-2012, 08:22 PM
 
Location: The Netherlands
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Originally Posted by nana053 View Post
This would depend upon what medication they were recommending and what symptoms it was supposed to treat. In general, there is no psychiatric medication for autism and you have to be very careful because there are many side effects. Read Temple Grandin's Book The Way I See It for a good view about medications. I too would be reluctant at this age.

This is not the best site for information about autism. We have some knowledgeable people here, but there are much better resources out there.

Books to start with:
Engaging Autism by Stanley Greenspan
The RDI Book by Steven Gutstein
Let Me Hear Your Voice by Catherine Maurice
Educate Toward Recovery: Turning the Tables on Autism by Robert Schramm

NOTE: My grandson was not interacting with the world at all at 18 months of age and was dxed and got 5 hours of therapy a week from early intervention and 10 hours a week of ABA paid privately. He is currently 8 years old and mainstreamed in 2nd grade (a year behind where he would be if we went by his age).

Here's the video I made of my grandson. It is a little out of date as he was 6 when this ended.
What Autism Looks Like pictures by toto053 - Photobucket
Thanks for your reply! Can you tell me what ABA means? I'm not really familiar with atheism terminology yet.

My nephew has gone to a special preschool for handicapped children (physically or mentally) for the past two years and he receives a lot of intensive therapy there. It's hard to tell whether he has made progress because as he gets older, it's becoming more obvious that he is behind in his development compared to other children. The problem is that he looks completely healthy on the outside so people just assume that he is a rude, misbehaving child. When he was younger and still wearing the feeding tube, people showed much more sympathy and patience with him. Now people will literally walk up to my sister and her husband when my nephew is being difficult and tell them to discipline their child My nephew has been banned from the local supermarket because he threw beer bottles around during one of his tantrums (and that wasn't the first time he threw stuff around in that store). Since my sister and her husband are quite young (mid-20s) people often assume that they just don't know how to raise their child and that his misbehaving is a result of their lacking parenting skills. It's a very frustrating situation.

My sister didn't mention whether the psychiatrist suggested specific medication or if it was just a general remark but as I said, she and her husband are very reluctant about it. The next step is getting parenting counseling to learn how to deal with an autistic child and they will be enrolled in a program called "Autimate" (I don't know if it exists in the US) which is kind of a support and guidance group for parents and children dealing with autism. My sister and her husband also went to the library today to borrow lots of books about autism because, like me, they don't really know much about it. I will suggest the books you mentioned

Edit: oh and I know the medical problems are not necessarily related to autism but they just make the situation more complicated. I feel so bad for him. He's been in the hospital more times than everyone in my family combined and he's only 4.5
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Old 07-20-2012, 09:26 PM
 
Location: Middle America
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ABA stands for Applied Behavior Analysis, a construct of behavioral psychology. It's a theoretical approach and methodology used in decreasing various types of behavior while simultaneously increasing the incidence of preferred, replacement behavior. There are a variety of strategies used in this approach, such as positive reinforcement for desired behavior, extinction procedures for behavior that is not desired, setting up of contingencies, and tracking behavior to determine its function through examining the antecedents or triggers, behavior itself, and consequences, and whether or not the behavior increases. People with autism tend to respond well to ABA-based intervention, but it works for all sorts of problem behavior reduction. There is a certification process for ABA therapists, but not everyone who implements ABA strategies is necessarily certified.
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Old 07-20-2012, 10:11 PM
 
Location: The Netherlands
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Originally Posted by TabulaRasa View Post
ABA stands for Applied Behavior Analysis, a construct of behavioral psychology. It's a theoretical approach and methodology used in decreasing various types of behavior while simultaneously increasing the incidence of preferred, replacement behavior. There are a variety of strategies used in this approach, such as positive reinforcement for desired behavior, extinction procedures for behavior that is not desired, setting up of contingencies, and tracking behavior to determine its function through examining the antecedents or triggers, behavior itself, and consequences, and whether or not the behavior increases. People with autism tend to respond well to ABA-based intervention, but it works for all sorts of problem behavior reduction. There is a certification process for ABA therapists, but not everyone who implements ABA strategies is necessarily certified.
Thanks! I suppose my sister and her husband will hear more about this in counseling. Discipline is probably the most challenging part because on the one hand, you want to teach him manners and right from wrong but on the other hand, you don't want to punish him for something he has no control over. Plus he has an older brother so you want to be fair and balanced too. Maybe this approach will help

By the way, I see that I used the word "atheism" instead of "autism" in my previous post

@Nana053, I forgot to say that it's not me who thinks my nephew has a severe form of classic autism (I wouldn't know how to classify these things), it's his team of psychiatrists and psychologists who observed him over an extended period of time who diagnosed him like that. They said that there are three types of development disorder within the autistic spectrum (Asperger, PDD-NOS and classic autism) and that Asperger and PDD-NOS were milder forms. Within classic autism there are different traits that are typical for an autistic person and since my nephew exhibits a lot of those traits, they classified him as having a severe form of classic autism. At least, that's how my sister explained it to me. But I don't know, I've watched some documentaries about autism today and the people that are presented as having severe autism seem much worse than my nephew. He's not a mathematical prodigy or anything and he's not obsessively repetitive either. He can be incredibly sweet and 'normal' too. But he's still so young, it's hard to say.

Last edited by LindavG; 07-20-2012 at 10:26 PM..
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Old 07-21-2012, 12:21 AM
 
Location: Middle America
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They'll definitely be advised that consistent application of set, realistic expectations is going to be key. The consistency is going to be the most important part.
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Old 07-21-2012, 10:10 AM
 
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Originally Posted by LindavG View Post
Thanks! I suppose my sister and her husband will hear more about this in counseling. Discipline is probably the most challenging part because on the one hand, you want to teach him manners and right from wrong but on the other hand, you don't want to punish him for something he has no control over. Plus he has an older brother so you want to be fair and balanced too. Maybe this approach will help

By the way, I see that I used the word "atheism" instead of "autism" in my previous post

@Nana053, I forgot to say that it's not me who thinks my nephew has a severe form of classic autism (I wouldn't know how to classify these things), it's his team of psychiatrists and psychologists who observed him over an extended period of time who diagnosed him like that. They said that there are three types of development disorder within the autistic spectrum (Asperger, PDD-NOS and classic autism) and that Asperger and PDD-NOS were milder forms. Within classic autism there are different traits that are typical for an autistic person and since my nephew exhibits a lot of those traits, they classified him as having a severe form of classic autism. At least, that's how my sister explained it to me. But I don't know, I've watched some documentaries about autism today and the people that are presented as having severe autism seem much worse than my nephew. He's not a mathematical prodigy or anything and he's not obsessively repetitive either. He can be incredibly sweet and 'normal' too. But he's still so young, it's hard to say.
Classic autism has different levels. Not all people with classic autism are low functioning. In fact, asperger's syndrome will go away as a dx in the new DSM as will PDD-NOS and all of them will be classified as ASD - autistic spectrum disorder.

Just because a child has classic autism, that does NOT mean he will never be mainstreamed.
Your team is behind the times, imo. For them to say something like that really burns me up. My grandson has classic autism. He fits that profile because he has so many of the traits. He has gone from severe when he was first dxed to mild pdd-nos on one of the questionaires I do periodically because of his therapies.

Getting therapies early is key. As tabula rasa mentioned ABA is Applied Behavioral Analysis. It is a form of teaching which breaks down things into the component parts to make it easier to learn. They may use some hand over hand when starting to insure success. There are different kinds of ABA and you have to find what works best for a given child, but in general, we found ABA to be extremely helpful. It can be very helpful with behaviors that need to be extinguished like the self-harming.

Also, with ABA you have to be careful. Bad ABA can harm a child. Do not let them use aversives ever.

You can dm me and I can give you lots more information if you ask questions or you can refer your nephew's parents to me and others who can help them. A dx at 4.5 implies to me that he was not severe enough to be dxed at 2 or 3 which is when many of the most severe cases are now being caught.
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Old 07-21-2012, 12:17 PM
 
Location: The Netherlands
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Classic autism has different levels. Not all people with classic autism are low functioning. In fact, asperger's syndrome will go away as a dx in the new DSM as will PDD-NOS and all of them will be classified as ASD - autistic spectrum disorder.

Just because a child has classic autism, that does NOT mean he will never be mainstreamed.
Your team is behind the times, imo. For them to say something like that really burns me up. My grandson has classic autism. He fits that profile because he has so many of the traits. He has gone from severe when he was first dxed to mild pdd-nos on one of the questionaires I do periodically because of his therapies.
I think the reason they said that is because my nephew will soon have to transfer to primary school (he's 4.5 and the legal age at which children must start primary school is 5 but most kids start at 4) so his parents will have to think about which school to send him to. It's not uncommon for children to go to a special school here, around 20% of the children do that. My brother went to a school like that because he has a very mild form of PDD-NOS (nothing like my nephew).

Quote:
Getting therapies early is key. As tabula rasa mentioned ABA is Applied Behavioral Analysis. It is a form of teaching which breaks down things into the component parts to make it easier to learn. They may use some hand over hand when starting to insure success. There are different kinds of ABA and you have to find what works best for a given child, but in general, we found ABA to be extremely helpful. It can be very helpful with behaviors that need to be extinguished like the self-harming.
I think my sister and her husband already use a technique like that although they don't call it ABA. As I said, my nephew has had intensive therapy (speech, physical and behavioural) at his school for two years now but it's hard because he barely speaks and doesn't cooperate.

Quote:
You can dm me and I can give you lots more information if you ask questions or you can refer your nephew's parents to me and others who can help them. A dx at 4.5 implies to me that he was not severe enough to be dxed at 2 or 3 which is when many of the most severe cases are now being caught.
The reason he wasn't diagnosed specifically with classic autism earlier is because of his other medical problems. There are other disorders that explain some of his behaviour (the tantrums and self-mutilation) and also explain some of his medical problems (hearing impairment, insomnia, heart problems). For a long time, his doctors were looking for a syndrome or disorder that would explain both. They thought they found it with the Smith-Magenis syndrome (which is caused by a genetic defect) but a chromosome test proved that it wasn't the case (it took about 6 months to get the results). However, his doctors had said from the start that he had a pervasive development disorder. According to this team of psychiatrists and psychologists that observed him, there is not a doubt that he has classic autism because he exhibits so many of the traits. The diagnosis didn't come out of nowhere, we've known for a long time there was something "different" about him but we just didn't have the correct label for it. I said before that my sister and her husband communicate with their son through pictograms and the reason they started doing this is because my nephew is very sensitive to planning. The pictograms show what will happen during the day (and the days have colours) so he knows exactly what's coming. If they deviate from the planning, he gets very upset and frustrated. Apparently, this is also a typical trait of autism. Even though his parents didn't know he had autism, they still used this technique because they noticed it worked (to an extent) for him.

It's good to know your grandson is doing well Even if my nephew will never be "mainstream" it doesn't bother me, as long as he's happy and - relatively - healthy. I understand what you mean, though. When my nephew was a baby the doctors told us that he may never walk and that he probably wouldn't live until the age of 4. He started walking at the age of 1 and is now 4.5 and not terminally ill Doctors don't know it all do they?
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Old 07-21-2012, 12:53 PM
 
Location: Middle America
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Properly applied ABA can be very helpful in working through behavioral noncompliance.
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