Welcome!

Welcome to Autism Fundraising Guide. I focus on therapies, treatment, advice, trends and personal anecdotes based upon my experience as a parent of a sixteen year old with Autism Spectrum Disorder. I have seen this disorder go from relatively obscure when my child was diagnosed thirteen years ago, to a very maintream epidemic today.

Monday, May 24, 2010

Autism Haiku

Autism Haiku

Racing Against Time

Children Awaiting Answers

Research Will Bring Hope

Friday, May 21, 2010

The Best Therapies for Children With Autism Day 6


Today is Day 6 of our week long series on The Best Therapies for Children With Autism. Today's highlight and focus is on The Son-Rise Program at the Autism Treatment Center of America.

The Son-Rise Program is very unique from any other treatment in the amount of time and effort they dedicate to helping parents as well as children with Autism. I think this is very important and that is why I have included them in my top 7 treatments. It is important to address the fact that parents are undergoing significant amounts of adult trauma from the difficulty and emotional pain associated with an Autism diagnosis for their child.

The first person to experience the Son-Rise Program was the Kaufman's son Raun. Raun was initially considered to be "severely Autistic and mentally retarded with a very low IQ." After the treatment devised by his parents, Raun ended up with a very high IQ. By all accounts, Raun, who is a fully grown man at this time, is living a normal life. This is a very inspiring story.

The Son-Rise Program advocates the concept of the parents and volunteers working a large amount of hours a week in a one-to-one fashion with their children with Autism. The Son-Rise Program also advocates an idea called "joining," which is cooperating with and imitating the child's initial interests, no matter how restrictive those interests seem to be at first. This is a good approach because it involves starting with the child on his or her level.

Many children are reported to have improved with this method, although these reports of improvement are primarily anecdotal and not fully research based. My opinion is that there are elements of this treatment that are unique, creative and effective. It would be reassuring if there was more research behind this therapy. I think parents should look at the Son-Rise Program to see if there are elements of it that could work for their child and their family. For more information see http://www.son-rise.org/.

Thursday, May 20, 2010

Best Therapies for Children With Autism Day 5


Welcome to Day 5 of the Series The Best Therapies for Children With Autism. Today's focus is on Floortime Therapy.
Floortime Therapy was developed by Dr. Stanley Greenspan of the Interdisciplinary Council on Developmental and Learning Disorders. It is possible to learn Floortime Therapy at an annual conference headed by Dr. Greenspan. For more information about this annual conference see http://www.stanleygreenspan.com/.

Floortime Therapy is very relational with the main emphasis being on the child's participation in circles of communication. This type of therapy teaches a child to respond naturally to parents and teachers within a relational type of context. In Floortime Therapy the emphasis is on following the child's lead. Floortime Therapy is one of the very few types of intervention that has a solid research backing for Autism Spectrum Disorder. Since Floortime Therapy is supported by strong research, it is recommended to be incorporated as the main therapy or at least as one of the treatment modalities used in the child's daily therapeutic program.

This is a very good approach for children with Autism who like to isolate and just be left alone. Dr. Greenspan addresses this problem specifically and shows how to engage even very self absorbed children. Among his many books, Dr. Greenspan has also written one entitled Engaging Autism. Dr. Greenspan's important work should be followed and implemented by any parent who wants to see improvement in children with Autism.

Wednesday, May 19, 2010

Best Therapies for Autism Day Four


Good Morning and welcome to Day 4 of our series entitled "Best Therapies for Autism."
Today's focus is on the DAN! Conference and the importance of having a DAN! Doctor.

DAN! Doctor and DAN! Conference

What is DAN! DAN! stands for Defeat Autism Now and it is a conference put on by the Autism Research Institute (ARI) organization that has two conferences a year. The DAN! website is located at http://www.defeatautismnow.com/. What is so great about this website is that there is a database where parents can located a DAN! physician. All the parent has to do is type in what state they reside in and then the website will direct you to doctors specially trained in the DAN! protocol.

The conferences that DAN! has every year are about the best new medical treatments for Autism Spectrum Disorder and children with Autism. The conference is open to both parents and professionals. For a parent to attend one of these conferences is very beneficial. It is the single best way of staying abreast of the latest medical and technological advances in Autism Spectrum Disorder. Parents should definitely attend these conferences in order to best help their child.

The upcoming conferences are as follows:

FALL 2010 Long Beach, California October 7-10, 2010
SPRING 2011 Atlanta, Georgia April 28-May 1, 2011

Tuesday, May 18, 2010

Best Therapies for Children With Autism Day Three

Welcome Back to Day Three of our 7 day series on The Best Therapies for Children With Autism. Today's topic is Augmentative Communication.

Augmentative Communication: Using DynaWrite for Autism Spectrum Disorder

On previous days we have discussed how it is better to focus on the overall broader goal of communciation as opposed to the narrower goal of speech. This naturally does not mean that we do not want children with autism to speak. Of course we do. It just means that we can use all means possible to encourage communication. DynaWrite is one of the best ways to do this.

DynaWrite is an amazingly complex speech output device. In my family, we call it the "talking machine." Basically, how it works is this: The child types their communication, and then hits a button labeled "speak." The computer digitized voice then speaks his sentence or paragraph aloud. Thus, the child has a "voice," in some cases for the very first time.

I decided to obtain the DynaWrite after seeing the interesting documentary entitled Autism Is A World, which was produced by a young adult college student with Autism. She is clearly very affected by the disorder but so intelligent and attends college. I thought the film was interesting because she had Autism but she still attended college and would go drinking with her therapists; (she was not underage.) I was also impressed that the girl with Autism Spectrum Disorder would go out to the horseraces as entertainment. The film inspired me and I bought the DynaWrite based upon my positive impression of the film and hope that the device could help my own son.

If you have a child that is very young and cannot type or read yet, then perhaps this amazing system could be integrated as part of their therapy in case that their speech does not wind up to be fully conversational. They could have DynaWrite as a fall back plan.

My own sixteen year old son is what could be described as "limited verbal." He can speak complete yet very simple sentences, and he speaks relatively clearly if the utterance is short. However, he has never spoken a paragraph, for example. He is not conversational. For longer utterances he relys on DynaWrite and in some cases he writes out his communication with a pencil and paper. He still seems to dislike and avoid speech. I really don't know why. Much about Autism Spectrum Disorder and Children With Autism remains mysterious.

The DynaWrite is expensive. Ours cost in the range of five thousand dollars. I just bought his out of pocket but many people have obtained funding through school districts or governmental funding. I do know that DynaWrite has helped us communicate with Daniel and I would recommend it for this reason. Maybe it could help your child also.




Sunday, May 16, 2010

Dietary Interventions for Autism Spectrum Disorder


Hello and welcome to Day 2 of our series on The Best Therapies for Children with Autism. Today's topic is Dietary Interventions for Autism Spectrum Disorder.
It is very important to at least try the dietary interventions for Autism Spectrum Disorder. Some children have really improved from such diets as the Gluten Casein Free Diet. This is because a certain subset of the Autism population also has Celiac Disease. People who have Celiac Disease cannot digest the protein gluten, hence the need to go on a gluten- free diet. If children with Celiac Disease eat foods that contain gluten, it causes them very terrible stomach pain, including gas, bloating, even vomiting and complete inability to digest their foods.
What is a gluten- free diet? Gluten is found in many common foods. Wheat, rye, barley and oats all have gluten and children with Autism Spectrum Disorder cannot eat foods with those ingredients. Unfortunately, this rules out many common types of flour, which impacts upon the child's ability to eat most store- bought breads. Children with autism spectrum disorder who are on the gluten free diet may eat bread made of rice flour.
These days, it is pretty easy to find a cookbook with recipes for gluten- free foods.
My son has been on this diet since he was four years old (about twelve years on the diet.) Back then, when we started it, we had great difficulty discovering anything he could eat, let alone would eat. Also, the substitutions back then were fairly disgusting. The gluten- free breads at that point were so incredibly heavy; they were almost inedible. Also, he needed a non- dairy substitution for cheese as well. The soy based cheeses back then were horrible.
I am pleased and delighted by how far these foods have come in recent years. It is now fairly easy to get a good quality soy- based cheese and there are also a variety of good gluten- free breads now as well.
Based upon our experience on the diet, I would say if your child with Autism Spectrum Disorder has stomach distress or pains at all, why not try the diet? See if it works for your family.

Best Therapies for Children With Autism

Welcome to Day One of our seven- part series The Best Therapies for Children With Autism. If you have a recently diagnosed child with Autism and are wondering what would be the best course of action and how to help them, this would be the series for you.

Day One Applied Behavior Analysis (Behavioral Therapy)

If your child has been diagnosed with Autism, or Pervasive Developmental Disorder or Autism Spectrum Disorder, then they will most likely benefit from a type of therapy called Applied Behavioral Analysis. Some people call this Behavioral Therapy. The name is something of a misnomer, because Applied Behavior Therapy (ABA) has far more to do with good teaching methods than it does with correcting behavior. ABA therapy can teach children with autism to do practical things like tie their shoes or functional things such as eat by themselves or eat a wider range of foods. ABA can certainly assist children with Autism in learning to communicate and it has taught some children speech.

The downsides to this type of therapy are that it is often not funded, leaving parents to pay for this out of their own pockets. This type of therapy is expensive and sometimes the progress is slow and painstaking.

The upside to this therapy is that it can be conducted in the child's comfortable home environment, and success is virtually assured if parents persevere patiently with the program. Another significant benefit is that this is one of the only types of therapy that has solid research behind it at this time. Dr. Lovaas took care to not only make claims about his success with children with Autism, but also demonstrated his results scientifically. This is important because it gives parents some idea of what they can expect for their children when they do this treatment.

Treatment is normally conducted in the child's home in a one to one setting using a series of prompts and reinforcers (rewards.) Almost all of the children respond positively to some degree or another from this type of therapy. A percentage of children with Autism recovered from this therapy and Dr. Lovaas documented this.

In sum, Applied Behavioral Analysis is a treatment that shows promise and hope for children with Autism.

Saturday, May 15, 2010

Why Parents Should Not Try to Get Children With Autism to Talk


Parents of children with autism, myself included, are usually very hyperfocused on getting their children with autism to talk. I remember when my now sixteen year old with autism was about three or four years old. All I used to think about was how I could get him to talk. This is understandable, since children with autism are usually speech disordered.

What Parents of Children With Autism Really Want

What I really wanted, though, was a relationship with him, and that can be accomplished in more ways than just through speech. Believe me, during those years, I just wanted him to acknowledge me and communicate any way he could. Perhaps it is not as effective for the child when we focus on the narrower goal of speech. It is far better to concentrate on the broader goal of improving communication. What is the difference?

4 Modalities of Language

Language has four modalities: talking, listening, reading and writing. Notice how speech is only one of the four, and it may be the very hardest for the child. There are three others. Talking and writing are expressive, whereas listening and reading are receptive. Some people have used writing (easier for the child) as a bridge to talking (more difficult for the child.) If you are interested in pursuing this option, there is an excellent curriculum that can help you bridge your child's writing over to speech. The curriculum is titled Teach Me Language by S.K. Freeman.

Some parents of children with autism also focus on the listening aspect of language by working with auditory programs such as Earobics. This can also have the overall effect of improving language/communication. Also, many children with autism are interested in books, so parents can read to their children in order to foster more communication.

The above are some ideas for parents of children with autism to help them improve in the broader area of communication and not be hyperfocused on speech only. Children with autism need work in all four areas of language: talking, listening, reading and writing.