Joy's Autism Blog

I went to an autism support group meeting on Tuesday night and it was about floor time. It was really informative and I want to do a detailed post eventually but I want to do some more research before I put down things I’m not sure about so I thought a good way to share what I’ve learned would just to tell some simple tips that the other parents/experts shared at the meeting.

On September 9th I wrote a very brief post about floor time. Here’s the link to that post here

Here are some of the floor time tips:

1. Follow your child’s lead, that’s what floor time is about. It’s interaction NOT instruction. In other words don’t be drilling your child about what sound a bird makes or what color is this or that, I’m terrible about this and I catch myself doing at almost every floor time.
2. Be very animated, exaggerate your facial expressions and emotions.
3. Use playful obstruction. You have to be careful with this one because you don’t want to push your child too far, this is supposed to be fun! An example of playful obstruction would be if your child’s “thing” is lining up objects you might put your hand in the way of him putting the next toy in line. This would create a need for him to communicate but if he’s getting to the point where he’s going to cry you might say “move mama” and move your hand.
4. Celebrate any communication, whether he’s grabbing your hand and taking you somewhere (Yes! That is communication. He’s saying come with me!) or signing, or spoken words or an irritated sound or sigh when you use playful obstruction.
5. Fall into your child’s rhythm. If he’s quietly playing with blocks you don’t need to rush up all excited and tickle him. Just come up quietly and play with blocks, that’s the role you should play as the follower, he’s the leader.
6. Keep communication going, if he’s enjoying you putting something on top of your head and sneezing it off and he’s communicated for you to do it again than by all means keep it going.
7. Play should be as natural as possible, just look for ways to get interaction with your child. Playing dumb or lazy can work well, for example, you’re in the middle of doing an activity that he really enjoys and needs you for…but all of a sudden you “fall asleep” and he has to wake you up to get to keep playing. Another example that I tried last night was when I put Adrian in the bath tub I left one of his socks on and plopped him in the water, he had to communicate with me that “hey mom you forgot this sock” he did that by lifting his foot out of the water and giving me some great (but confused) eye contact.
8. Give them a choice, if they’re interested in playing with a puppet hold up two puppets and let them choose. This is different then instructing them, there is no right answer here, that’s the main thing. Choices are good, a choice will end in communication.
9. Discuss their ideas, if they’re building blocks you might say “What are you building? Is it a house? Is it a school? etc..

I also jotted down a couple of books that the psychologist recommended they are “The Affect-based Language Curriculum (ABLC) By Dr. Greenspan and Lewis and the other one is “Relationship Development Intervention with Young Children” By Steven Gutstein and Rachelle Sheely.

More will come from me on this topic, I think floor time is wonderful. Every time I’ve done it I’ve had great eye contact from Adrian and I think he just knows I love him with that one on one time with no drilling him or trying to make him do stuff he doesn’t want to do.

The CDC came out with a report this week stating that autism and related disorders (ASD’s) in the United States is now 1 in 150, instead of the 1 in 166 that it was. Anyone who argues that autism isn’t growing and isn’t an epidemic is a fool. There is no way that children are just being diagnosed more now and that there were always this many people with ASD’s. This country is going to have a problem on it’s hands when these kids grow up and can’t support themselves. I just hope they can find out what in the world is causing this dramatic raise in people with autism, I don’t think it’s just genetics, there has to be some kind of environmental factor here.

What is Probiotics?
According to Wikipedia, probiotics are dietary supplements containing potentially beneficial bacteria or yeast, with lactic acid bacteria as the most common microbes used.

Why would that help someone with autism?
There have been studies done that link bacteria in the gut and autism, stomach problems like constipation and diarrhea are common in people with autism. It’s been suggested that microbes that would normally be found in someone’s gut may not be present in someone with autism’s gut.

What positive outcomes from the probiotics did parents report?
Improvement in concentration and behavior were reported.

The reasoning I was curious about Fragile X syndrome is because I have read it’s the only known cause of autism and it actually can be tested through blood to see if you have this syndrome. After reading some about Fragile X I don’t believe it’s something we need to worry about with Adrian but I wanted to share a little bit of the information that I came across.
Fragile X Syndrome is the most common cause of mental retardation that is inherited. People who have fragile X syndrome display some autistic characteristics such as hand flapping, trouble with eye contact, speech issues, among other common autistic traits. Unlike autism there are trademark physical characteristics of people with fragile x, some of these traits include enlarged ears, long face, flat feet, enlarged testicles, and possibly double jointedness.

Here are the sites I got my info from and I recommend looking into fragile x if your child has autism.

http://www.fragilex.org/html/home.shtml

http://en.wikipedia.org/wiki/Fragile_X_syndrome

• 10% of autistics have savant abilities, and ability that is considered remarkable by most standards. Many times the ability is in art, music, or mathematics
• The word “autism” comes from the greek word for “self”
• Autism was one of the most searched terms on google in 2006
• Some or all of an autistics senses are 100 times more sensitive than other people’s
• Autism is five times as common as downs syndrome and three times as common as juvenile diabetes
• If one identical twin has autism there is a 60% chance the other one is on the spectrum as well

This page has some great statistical information if you scroll down the page you can look at disability by state and graphs of the increase in autism from 1999 to 2003.

http://www.stevens_mom.tripod.com/id49.html

I didn’t really know much of anything about the GFCF Diet. I still have a lot to learn about it but this is what I’ve learned so far.
Q. What does GFCF stand for?

A. Gluten Free Casein Free Diet

Q. What types of foods contain gluten?

A. Wheat, oat, rye, & barley products

Q. What types of foods contain casein?

A. Dairy products

Q Why would an autistic person benefit from a GFCF Diet?

A. It’s been shown that a lot of autistic people have trouble breaking down these kinds of foods which causes a build up of proteins. These protein damage the intestines and allow waste and proteins into the body. These proteins can attach to the opiate receptors in the brain and I’ve read, is the equivalent to being on a morphine drip all the time. *Keep in mind that I’m not a medical professional, just a mom, and this information is based on research that I’ve done on the internet and in books. If you see something here inaccurate please feel free to let me know so this can be edited if need be.*

Q. What are symptoms of having trouble breaking down these foods?

A. diarrhea (also referred to as leaky gut syndrome), constipation, hyper activity, passing gas frequently, circles around the eyes, red face or ears, or thin or frail build.

Q. Has this helped autistic children?

It has in fact made a dramatic difference for many families. I’ve heard this directly from some families and it’s also reported by the Autistic Research Institute that out of 933 cases 4% symptoms got worse, 33% had no effect on symptoms, and 63% got better. That is a ratio better:worse of 16:1. Those are pretty good odds for improvement if you ask me and it’s definatly worth a try.

We have started to implement a diet for Adrian. So far we have cut out regular milk and are substituting rice milk. He has handled it very well, next we will cut out pasta and bread.

Talk to your child’s doctor before you change their diet.

Adjusting to a disability can be very difficult for kids. One thing we’ve noticed about Sanura is that we can just see the jealousy and resentment when we buy Adrian educational materials or when his teachers come over and she has to kind of stay back so we can work with him. The siblings of autistic children are more likely to have behavioral issues, learning problems, depression, or do poorly in school. So how can we help our other kids not to feel left out and resentful? Here is the information I’ve found:

• Keep a positive attitude, a positive attitude about the disorder can do wonders for ALL of your children, for you, and your spouse. What’s the point of being down all the time? It doesn’t help anything
• Communicate. Let your kids know that you are willing to answer any questions that they have and that they can share their feeling with you about their brother/sister or anything else. Try to explain in “kid terms” what autism is.
• Get involved in the activities of all your children, not just the one with autism. They have to be showed that they’re important too, because they are!
• Show siblings the best way to play, interact, and get the attention of their autistic sibling.
• Make sure they get some time with just their friends without having to include their sibling and time alone with the parents alone also.

In my opinion the best possible thing we can do to help all of our children, disability or not, is to stay involved and interested in their thoughts, feelings, and activities.

PECS is a nonverbal communication method that can be utilized for individuals with autism that don’t verbally communicate or have limited verbal communication skills. I believe PECS can help reduce some of the stress and frustration that many children with autism experience. Some behavior issues that autistic children have are caused by the stress and frustration of not being able to get across their wants and needs.
PECS stands for Picture Exchange Communication System. It consists of pictures of items that a person might want. It’s best to start with something that is highly motivating, for example, we started with cookie for my son. Basically Adrian’s teachers brought over a binder with velcro strips on it and we wrapped an actual cookie in tape so he couldn’t eat it. Then we would put the actual cookie on the velcroed binder and he would take the cookie and with just a little hand over hand to show him he would give me the wrapped cookie and I would give him a little piece of cookie to eat. To get any more cookie he would have to request it again by handing me or his teacher the wrapped up cookie. Adrian caught on to this very quickly and we added bubbles to his binder (just a picture of a bottle of bubbles and bubble wand) and he can request that with ease now as well. When we give him the desired/requested object we get down to his level and say what we’re giving him. (cookie or bubbles) Last week we added an undesirable object (a picture of a sock) this way we know if he’s just randomly giving us the pictures or actually looking at them and deciding what he wants.
I was a little nervous about doing pecs or sign language at all because I was concerned he would only want to communicate in that way and never want to communicate verbally. I have come to realize that this is just a visual tool to help autistic children really know the meanings of words, making that connection between a word and the actual object.

The Floor Time approach was developed by Doctor Stanley Greenspan. Floor Time is therapy done through child-led play. The goal if for the parent or educator to follow the child’s lead in play but the tricky part is to make whatever activity they’re interested in interactive and fun for them. This can help a child learn to feel pleasure when interacting with others, learn about emotions, and teach two way communication. It is best to try to do this 20 to 30 minutes at a time, six to ten times per day.

Book about the Floor Time Approach:

The Child with Special Needs: Encouraging Intellectual and Emotional Growth

By:Stanley Greenspan and Serna Wieder

If you suspect that your child has an ASD the first step is to call your child’s doctor but while you are waiting for you appointment start taking notes on your child’s behavior. You’ll want to jot down anything that you think is autistic behavior, words they can say, eye contact, how they act around other kids, eating habits, and anything else you might think is relavent. A lot of doctors don’t know that much about autism, at least a lot of the doctors I dealt with. I had a really great experience as far as doctors go though. They listened to what Glen and I thought and even got out a medical text book and looked up information about autism right in front of us. You may want to come in with some general information about autism though and how it relates to your child’s behavior.

Autism is a very mysterious disorder. Researchers haven’t narrowed down a single cause to autism although there are abnormalities in different areas of the brain and a number of genes have defects. People with autism also have a higher than normal risk of epilepsy, tourettes, tumors in the brain, and fragile X syndrome. Family’s with one autistic child have a 1 in 20 chance of having a second child with an ASD although I’ve read that number may be higher but some parents stop having children once they have one with an ASD.

In the United States today about 1 in 166 people have an Autism Spectrum Disorder, this number is significantly higher than it was even just 10 years ago. Is it that there are just more people getting the diagnosis and it’s always been that high? I’ve heard that argument and I just don’t agree with it. One of my reasons is that one of psychologists Adrian has seen had over 40 years of experience and she said from personal experience that those kids just weren’t there before, it’s not that they weren’t going un-diagnosed. Other than that, numbers have increased so drastically that there is no way all those people were going un-diagnosed. Maybe a small percentage of people went un-diagnosed but certainly not enough to explain the huge spike in cases of ASD’s.

There is no “cure” for autism but I have heard time and time again that early intervention can work wonders. That’s why it’s so important that if you suspect something is going on to get moving on it right away. The sooner you start up some therapy the better off your child can be. It’s ideal if you can get your child communicating in a meaningful kind of way before or at the age of 5, of course the sooner the better but ideally by 5 years of age.