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.

Monday, March 1, 2010

Stress Relief Techniques for Children With Autism


Children with autism spectrum disorder are incredibly stressed and anxious in many cases. It is important to devise stress relief techniques for children with autism. When children are relaxed they can concentrate more on their therapy and treatment. Also, if they are continually tense they will have difficulty enjoying the fun moments of childhood. Stress relief techniques for children with autism must be practiced. Parents can have children practice stress relief techniques for physical as well as emotional well- being.

Here's how to have children with autism practice relaxation:

1. Learn to recognize feelings of anxiety

One of the first steps to overcoming anxiety is to recognize that it exists. There is a book entitled I Have Feelings, Too! It is an interactive book of emotions and feelings to help children recognize how they feel. Also, there is a CD-ROM entitled Fun With Feelings that can help children identify their emotions. Finally, there are Personalized Success Stories that address the topic of feelings. All these resources are available at Different Roads to Learning http://www.difflearn.com/

2. Provide relaxing sensory input

Children with autism respond well to relaxing sensory input. This can be provided in the form of vibrating massagers since the children normally like the sensation. Also, sensory balls of various textures can be very relaxing for children with autism. Some of the types of balls available include squishy balls, string balls, fuzzy balls, slime balls and bead balls. These balls do not normally bounce. Kids think these tactile toys are very squeezable and generally fun.

3. Put on relaxing music

Pay attention to what type of music the child likes. It is beneficial to have a quiet time in which the child's favorite music is on.

4. Discuss the day in advance

One of the things that increases anxiety in children with autism is changes in routine. Also, some children have limited ability to ask questions about an upcoming event in their day. It is best if parents and therapists "go over" the day in advance, using visual schedules if possible. Visual schedules provide a pictorial of how the child's day or upcoming event will be. Children find visual schedules reassuring and it provides improved communication between parents and children, which reduces anxiety. Visuals and visual schedules may be obtained at http://www.meyer-johnson.com/.

At first it may seem hard to get into the habit of practicing the stress relieving tips for children with autism. It may seem like just another task in an already overloaded schedule. But by making it part of the child's daily life, children will receive great physical and emotional benefit.

Children With Autism: How to Have Improved Behavior During Doctor Visits


Would you like your child's visit to doctors to go more smoothly? Children with autism see many specialists and these doctor visits are often so trying for parents.

Let's look at three tips for improved behavior in doctor's offices. If you do all three, your doctor's visits will go much more smoothly.

1. Get the first appointment of the day

The importance of this tip cannot be overstated. Taking children with autism to the doctor in the middle of the day, or worse, in the late afternoon is a clear recipe for disaster. This is because the doctor's staff generally overbooks the doctor. This often causes doctors to "run behind" by a half hour to an hour a day. Many doctors still do not know that children with autism have difficulty waiting patiently. Hence, it is imperative that you obtain the first appointment of the day for any type of medical personnel interaction with children with autism.

2. Visit the doctor's office before the visit without the child

It is best to visit the doctor's office unaccompanied by the child at least once prior to the visit. The purpose of this is to check out the waiting room environment. Are there any toys there? If so, what kind? It there are toys, are these the kind of toys that your child loves so much that a tantrum could begin because of it? Just check out the waiting room environment. Remember, you intend to book the first appointment of the day anyway so hopefully you won't be in the waiting room long.

3. Bring a reinforcer bag

Carefully pack a bag of reinforcer items that your child loves. Some ideas include play-doh, toys that light up and spin or have soft music. Also, pack some snacks that are winners with your child. There is usually a no- eating policy in doctor's offices, so keep the items very small. Finally, do not forget sensory comfort items. Some ideas are soft clothing, a small blanket and "chewy tube" type items. It can get loud in there. Do not forget the headphones or earplugs if your child likes them.

Thursday, February 18, 2010

Children With Autism: The Importance of Grandparents


Children with autism are dealing with a lot each day as they interpret their environment. Parents of children with autism are often overwhelmed as they seek the best treatments and therapies. Parents are engrossed in their role as the leader of the child's therapeutic team. Parents have many jobs, as they must act as liasions among the various specialists and also advocate for their child within school systems. In other words, parents are very busy. This sets the stage for the spotlight to rest upon some very interesting characters in the autism family drama: the grandparents.

The role of the grandparents for children with autism cannot be overstated. In past years over diverse cultures, elders across every society and tribe held positions of great respect. This is because in most cultures elders are considered the keepers of ancient secrets or wisdom. In a disorder where both the cause and the cure are currently unknown, the best course of action is to give deference to the wisdom of the elder members of society.

The grandparents and great- grandparents of children with autism can provide insights into the child's behavior that parents may be too exhausted to see. Also, upon having a child newly diagnosed with the disorder, parents themselves go through the normal stages of grief. So, in a sense, parents need help too. Grandparents can provide help, unique perspective, patience and experience.

Upon the topic of experience, parents may feel that the grandparents have never before brought up a child with autism, so what can they know about it? Grandparents may not know autism, but they know children. Children are children, after all.

As a personal example in this writer's experience, my own grandmother was the one who taught her autistic great- grandson (my son) how to write. When he was three years old, my grandmother began patiently and painstakingly writing the letter"A" in shaving cream. She proceeded through the alphabet until he could write all the letters, then words. He is fifteen today and evidences no fine motor delay whatsoever. He writes well. She accomplished this during a time when he was completely nonverbal and the rest of the family was in shock, confusion and despair. Age brings patience and patience brings wisdom and results.

Grandparents and great- grandparents of children with autism should have positions of honor in any roundtable discussion that involves brainstorming. Their physical strength might not be great but their life experience is.

Tuesday, February 16, 2010

Children With Autism: Birthdays


I saw a post by another parent on a message board and it began this way "Today is my autistic son's birthday and I am sad..." I recalled all the many years past that I felt exactly the same way. This was a sentiment that it was impossible for many people to understand, but I bet other parents of children with autism do. The reason for the sadness is certainly not that you regret the day they were born! Parents of children with autism love them with one of the strongest, fiercest loves ever seen on this planet. The reason for the sadness is because a birthday represents a significant milestone- a date of importance that cannot be ignored.

Every year, at various times but certainly at birthdays, parents of children with autism face the indisputable fact that although their child might be twelve or thirteen chronologically, they are far younger than that developmentally. This creates an understandable pain and anguish in the parent. This highlighting of the differences inherent in the disorder makes it difficult for many parents to "celebrate" a "happy birthday." It takes time, and above all a very difficult spiritual concept called "acceptance," to actually have fun on the birthday of a child with a significant delay.

Today, my son's birthdays are a blast. I suppose this testifies to how far we have both come (more me than him.) He is fifteen now and doing much better than before but yes, he is still significantly delayed in certain areas, particularly speech. Interestingly though, I rarely think about the delay anymore. He is very happy and he is doing very well. His birthdays are joyful now- I guess celebrations of the absolute war I feel we have been through.

To those parents who are sad on their developmentally delayed child's birthday, to you I say I understand. I have been there. One day in the future you will be happy on his birthday, I promise it.