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Frequently Asked Questions |
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What is Autism?
What is PDD-NOS?
What is ABA?
What kind of progress have you seen with ABA?
Why doesn't insurance cover ABA?
Are other therapies necessary?
You mention that he is on a special diet.
Aren't special diets a struggle?
What kind of supplements does he take?
Why does he have to take all those supplements?
Have you explored State or Federal funding?
How have you funded Nicolas' treatment thus far?
Have you considered public educational resources?
Would you be willing to show a picture of the whole family?
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correspondence@helpnicolas.com |
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What is Autism?
Autism is a neurological disorder that impacts the normal development of the brain
in the areas of social interaction and communication skills. Children and adults
with autism typically are impaired in verbal and non-verbal communication, social
interactions, and physical abilities. A frightening aspect of the disorder is
that left untreated, children cannot assess sensory input properly, leaving them
vulnerable to danger. As many as 1.5 million Americans–children and
adults–are thought to have autism today.
A more complete explanation of autism, its characteristics, and possible causes
is available at
www.autism-society.org/site/PageServer?pagename=whatisautism. |
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What is PDD-NOS?
PDD-NOS stands for Pervasive Developmental Disorder–Not Otherwise Specified.
Autism is a spectrum disorder, meaning that it affects each individual differently
and to varying degrees of severity. According to diagnostic tests, Nicolas did not
meet the specific criteria for related disorders, such as Asperger's Disorder,
Rhett's Disorder, or Childhood Disintegrative Disorder. He meets the essential
criteria, without the self-injurious behavior, and he is high-functioning. Since
all autism spectrum disorders fall under the classification of Pervasive
Developmental Disorders, PDD-NOS applies to children on the autism spectrum for
whom convenient labels have not been devised. What it means for Nicolas is that he
stands to gain a great deal from ABA therapy.
You can find more information about autism spectrum disorders at
www.autism-society.org/site/PageServer?pagename=definingsyndrome. |
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What is ABA?
Applied Behavior Analysis (ABA) is a 30-year-old treatment approach for retraining the
brain. Based on the principle that behavior rewarded is more likely to be repeated
than behavior ignored, ABA equips the autistic child with needed skills and concepts
while working to eliminate counterproductive behaviors in the child. Every task given
to the child consists of a request to perform a specific action, a response from the
child, and a reaction from the therapist. It is in the therapist's reaction that
behavior is rewarded, ignored, or removed. When needed, tasks are broken down into
short simple pieces for prompting or reinforcement. Where applicable, further
administration of the techniques help the child to master the concept or skill in
similar and dissimilar scenarios. Children usually work for 30 to 40 hours per week
one-on-one with a trained professional who adheres to a strict code of ethics. ABA
follows a scientifically measurable approach, and research has shown that the
techniques reap consistent results. |
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| Nicolas during one-on-one session with a therapist |
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What kind of progress have you seen with ABA?
In the summer of 2001, Nicolas probably knew just 50 words. In the fall of 2002,
he was barely putting 2 to 3 words together. In September, 2003 Nicolas began ABA
therapy full-time (30 hours per week). After 2 months of therapy, he began making
3, 4, 5 and even 6-word sentences. As early as March, 2004 he began playing with
other children appropriately and talking with his peers. We have also seen a
dramatic increase in his imagination. You can read more about his overall
progress (including ABA) here. |
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Why doesn't insurance cover ABA?
Our insurance company and others have chosen to limit their decision-making to research
that was conducted 20 and 30 years ago. The insurance company has chosen to define
the number of children involved in that research as a small sampling. Consequently,
they conclude from the number of children in the early research that ABA is
experimental treatment. We have been through a multiple-level appeal
process, and the insurance company continues to ignore more recent research and
analysis as well as recommendations by the Surgeon General, the American
Academy of Pediatrics, and the National Institute of Health. Despite mounting
evidence to the contrary, most insurance companies see no hope for kids with autism
spectrum disorders, to the point of excluding the valuable therapy that would help these
children realize their potential. |
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Are other therapies necessary?
Nicolas received several weeks of listening therapy in 2003 to help him differentiate
between foreground and background sounds and to help with his ability to focus. At
present, Nicolas attends Occupational Therapy (OT) once a week to improve on some very
big deficits in his body movement and strength, including gross and fine motor skills.
OT also addresses sensory integration, helping his brain to correctly process the
information that he receives through his five senses. We also expect that Nicolas
will need speech therapy to aid in articulation and general language deficits.
Stringent insurance limitations prevent him from receiving all of the OT and
speech therapy that he needs. |
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You mention that he is on a special diet.
Nicolas began the Gluten Free/Casein Free (GFCF) diet in May 2003, and moved to the
Specific Carbohydrate Diet (SCD) in March 2004. Many children on the autism spectrum
have difficulty digesting proteins, specifically gluten (found in most grains and
countless other sources) and casein (milk protein found in all dairy). Along with
this, the children often have intestinal permeability (commonly called a
"leaky gut") brought on by systematic yeast and bacteria. When the body
doesn't break down the proteins, they remain in peptide chains to be carried
through holes in the intestine, into the bloodstream, and to the brain. For a child
affected with these issues, gluten and casein can act like morphine in their brains
and cause all kinds of problems. While we did not have any scientific tests in hand
to prove he had a leaky gut or digestion deficiencies, we concluded that there was
nothing to lose and much to gain from trying the GFCF diet. We noticed that Nicolas
spoke more within one week without dairy; so we proceeded to remove gluten products
as well.
The move to a modified form of the SCD diet came after some tests showed that
systematic yeast was still high (though not as high) and that bacteria (Clostridia)
had come on strong in Nicolas body. The SCD incorporates enough of the precautions
of GFCF that we felt this was the next logical step in healing the gut. The SCD
prefers monosaccharides (found in honey, fruit, and vegetables) over disaccharides
and polysaccarides because the complex carbohydrates fail to break down in the
bodies of many autistic children. When this happens, yeast and bacteria feast on
the remaining carbohydrates and perpetuate the leaky gut syndrome. (Go to
www.pecanbread.com for a
more complete explanation as well as dietary information.) |
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Aren't special diets a struggle?
The dietary part of Nicolas' treatment has been costly, time consuming, and
completely worth it all. He has shown amazing gains and although we cannot assign
a percentage of improvement to the diet, we do know that he is healthier now than
before the diets. He is having fewer reactions to foods which we hope means that
his gut is healing, thus setting him up for increased success in the other therapies.
His mother successfully comes up with different recipes to mimic all of the staples
that kids love (cookies, chips, hotdogs, chicken nuggets, fries, apple pie).
But he also has learned to like lentils, cauliflower and carrots to name a few
things. Nicolas hardly misses out on anything, and because of all of these changes
for Nicolas, our whole family is eating better and healthier. |
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What kind of supplements does he take?
Nicolas' list of supplements include Dimethylglycine (DMG), Zinc, Selenium,
N-Acetyl Cysteine, Acetyl-L Carnitine, cod liver oil, Yeast-Aid, Culturelle,
calcium, magnesium, and specific strains of vitamin C, vitamin B6 and B12.
Nicolas also takes digestive enzymes with each meal to help his body properly
absorb food and, hopefully, to allow him occasionally to eat "off diet"
without adverse effects. |
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Why does he have to take all those supplements?
Dimethylglycine (DMG) has proven to increase language use in many children on the
autism spectrum. Higher doses of vitamin B6 and magnesium have also yielded
improved language and behavior. Yeast-Aid is a product to help eliminate yeast.
And Culturelle is a probiotic (beneficial bacteria) shown to help eliminate Clostridia (bad bacteria). The other supplements address deficiencies
produced by dietary restrictions or the resulting from his digestive problems.
They are taken individually because either they are not found in multi-vitamins or
common multi-vitamins do not provide strong enough doses needed by autistic children. |
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Have you explored State or Federal funding?
In the state of Texas, the administration of both state and federal funds is
determined by income. Even though, as a family of five, we are unable to afford
Nicolas' treatments out-of-pocket, our gross income disqualifies us for
consideration. (Ironically, this type of restriction only applies in certain states.) |
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How have you funded Nicolas' treatment thus far?
Debt. Our home hasn't much equity built up, so we have charged the limits of our
credit cards and have borrowed from family to pay for treatments. But Nicolas'
treatments need to continue beyond our capacity to borrow, so we are now relying on
donations by interested individuals. |
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Have you considered public educational resources?
Nicolas was enrolled in the public preschool program for children with disabilities
during the 2002-03 school year. At the beginning of the year, the student-teacher
ratio was 5:2. By the end of the year, the ratio had risen to 9:2, and the children
in his class presented a wide variety of handicaps. Moreover, Nicolas had a tendency
to shut down in group settings; he really needed one-on-one therapy, and we quickly
realized that this was not going to materialize. His teachers did the best that they
could, but there was just no way they could meet the needs of all of the children.
At the end of the school year after 8 months, Nicolas emerged not much further along
in his language than when he started. Beyond that, Nicolas' PDD-NOS diagnosis
revealed to us that he had a medical problem not an educational problem and that we
needed to seek more focused treatment. |
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