AUTISM: A
NEURODEVELOPMENTAL APPROACH
Kay Ness and Cyndi
Ringoen, ICAN Certified Neurodevelopmentalists, 2004
We
serve a God of hope. In I Corinthians 10:13, our Lord
promises that our trials will not be too great and that
He will provide a way of escape. We, at ICAN, firmly
believe that the hope that the Lord has provided for
parents of children with a diagnosis of autism lies in
the very nature of our created being.
What
Does this Diagnosis of Autism Mean Anyway?
Autism
is a very confusing diagnosis that can strike fear and
dread into the heart of parents. In seeking answers for
their children, parents are faced with a wide range of
information about what to do. A further parental burden
comes when trying to train a difficult child with many
confusing, conflicting, odd and unexplained behaviors.
As they seek out experts, the advice ranges from no
potential for improvement to only minimal glimmers of
promise. Families take on additional burdens of time,
education and finances in the desperate hope that
despite the negative prognosis, there is something they
can do to help their child.
Autism
is a diagnosis that is more prevalent today than ever
before. According to CDC numbers, 1 in 166 children will
be diagnosed with autism (or on the autism spectrum)
with the prevalence in boys 4 times higher than in
girls. (1) This compares to the 1 in 10,000 incidence of
autism diagnosis just 20 years ago. Though some of the
increase in diagnosed cases can be attributed to
improved screening methods detecting the condition, this
increase in diagnosis cannot be entirely explained away
by simply improved diagnostic screening. (2) Logic
demands that something environmental must be going on
that is the cause of the marked increase in the
incidence of autism. If underlying causes can be found,
then treatment is possible. Unfortunately, rather than
looking into environmental causes that may have caused
the marked increase in the condition over the past 20
years, most research money is going into genetic
research, that attempt to identify genes or sets of
genes that are precursors to autism. Again, logic
demands that the gene pool does not change so
drastically in 20 years to result in such a large
increase in autism.
About
the Diagnosis of Autism
Diagnosis of autism is made based on the DSM IV scale of
behavioral and functional characteristics (3) which is
both symptomatic and subjective. Children can display a
wide range of functional issues and still fall within
the broad criteria, making this diagnosis even more
confusing to parents. Diagnosis based on the DSM IV does
not in any way indicate the cause or the treatment
needed to achieve normal function. Some children do not
talk, some talk in an echolalic or scripted fashion.
Some children cannot read, others read very early and
well, but in an obsessive way. All children within this
diagnosis have some type of social impairment and most
have repetitive behaviors. Is there anything that can
explain such a wide range of functional disturbances?
The answer is Yes! The commonality that all these
children have is sensory dysfunction, meaning one or
more of their senses are not functioning normally. This
is why it is imperative to find and treat the root
causes and not the symptoms.
Depending on the model with which children are
evaluated, different solutions emerge. As
neurodevelopmentalists, we do not try to diagnosis or
label, but we evaluate each child as an individual.
The
Doman/Delacato developmental profile was derived by a
dedicated, eclectic group of individuals, lead by the
famous neurosurgeon, Dr. Temple Fay. This group was
researching ways to improve the function of individuals
with brain injury. (4) We use a modification of the
Doman/Delacato developmental profile to assess the major
sensory input pathways (tactile, visual and auditory) to
the child’s central nervous system and to evaluate the
major motor output pathways (gross motor, fine motor and
expressive speech and language) for the purpose of
understanding developmentally each child’s strengths and
weaknesses. (5) With this model of hierarchical
development and the fact of neuroplasticity (the ability
of the central nervous system to be ‘rewired’ with
stimulation) (6), it is found that parents can be
empowered with the information to help their children
progress. This is the key. Specific stimulation of
sensory pathways with the appropriate frequency,
intensity and duration can normalize them. As
neurodevelopmentalists, we see this as THE hope promised
in I Corinthians 10:13.
Dr.
Carl Delacato in his groundbreaking work, The
Ultimate Stranger (7) describes his path of
discovering the distorted sensory system as the basis to
explain some of the odd behaviors of autistic children.
A genius can be described as someone who looks at the
same things everyone else sees and yet finds something
new. This is certainly the case with Dr. Delacato. After
working to help develop ways to improve the function of
children with brain injury, Dr. Delacato took on the
unheard of task of improving extreme behavior in
autistic children. During his path of discovery, he saw
some of the same type of repetitive behaviors in blind
and deaf children that were seen in autistic children.
However, in the case of blind and deaf children, these
were called ‘blindisms’ and ‘deafisms’ not autism. This
led him to explore the sensory system of autistic
children to see if this was a root cause of the odd and
repetitive behaviors. And indeed, he did find distorted
sensory input and was successful at stimulating those
sensory pathways in many children to resolve behavioral
issues and bring about improved function. He found
sensory inputs of auditory, visual and tactility being
either too sensitive (hypersensitive), not sensitive
enough, (hyposensitive), or what he described as ‘white
noise input,’ a scrambled message that cannot be
interpreted well by the brain.
Since
sensory input is the way we gain information about the
world, it is the basis of our learning, discovering and
intellectual growth. Without clean, consistent sensory
input, the world is strange, unpredictable and even
painful. The odd behaviors of children with autism do
not have to be explained by psychosis. These children
are trying to make the best sense of the world that they
perceive. Our job is to help them by careful
observation of their function which will then indicate
which sensory channels are distorted. We can then
provide appropriate stimulation to normalize their
pathways and improve function.
Autistic Behavior Based on a Neurosensory Model.
We
describe response to sensory issues as the basis of the
diagnosis. The odd behaviors of autistic individuals,
the accompanying repetitive behaviors, and sensory play
give us clues as to how that individual perceives his
environment. Based on Dr. Delacato’s observations and
our work with thousands of children with autism, we have
concluded that sensory issues are at the heart of the
diagnoses of autism.
In the
area of tactile input to the brain, there are general
patterns we see. Children with a label of autism often
have a very high pain tolerance, have low muscle tone,
and lack of coordination. These children crave deep
pressure, repetitively hit themselves, or bang into
things trying to get the deep sensation that they are
missing. These same children are often overly sensitive
on the skin surface. They resist being held, are
irritated by textures, and annoyed by light touch. The
children can be overly sensitive to temperature changes,
or be unable to perceive hot and cold at all. Smell
distortions may result in a child seeking strong or
disgusting smells and engaging in disturbing behaviors.
Mouth sensitivity problems are common, causing the
children to resist foods, citing problems with textures
and temperature. Distortion of tastes and smells cause
many children to make very limited food choices.
Rejection of food not only inconveniences and distresses
parents, it also negatively affects the child’s health
and nutrition.
The
auditory pathways to the brain are often distorted in
children with autism. Though audiograms may show good or
very good hearing, some children interpret sounds as
painful and simply shut down when auditory stimulation
is present. Parents often take their children for a
hearing test as the first sign that something is wrong,
usually when the child is not responding to his name or
is not talking. However, autistic children do not have a
lack of hearing acuity, rather, they have tonal
distortion in their interpretation of auditory
information. Sounds that seem normal to us may be
painful to children with such issues. These are children
whose behavior may break down in noisy or confusing
environments such as malls or large stores. Their hands
are often covering their ears. Alternatively, they may
act as if they are deaf.
Interventions such as AIT, Tomatis and a plethora of
other sound therapies have helped many children improve
function by remediation of auditory and related issues
and normalization of auditory disturbances. We have
experienced consistent and rewarding results with the
superior technology of Samonas Sound Therapy, which not
only addresses the auditory pathways to the brain, but
works on the spatial aspects of sound interpretation.
This unique Samonas technology and recordings with
superb attention to quality and technological innovation
presents only in this system of intervention.(8)
Lack of
expressive communicative language is another quality
often seen in children with autism. Normalizing the
auditory pathways so that the tonal processing can be
clear and consistent is of the utmost importance for
developing language. After this is addressed, a child
can then begin to develop sequential processing or
auditory short-term memory. Regardless of chronological
age, a person must have an auditory sequential
processing of at least two pieces before expressive
language will begin to grow in output. (9) Visual
disturbances are another area we often see in children
on the autism spectrum. Parents often report little to
no eye contact, fascination with spinning wheels or
mirrors, engagement in visual sensory play by dangling
objects in their peripheral visual field, or odd finger
play. On evaluation of these children we find them to be
overusing their peripheral vision (hypersensory) and
underusing their central detail vision (hyposensory).
This child lives in a world of peripheral vision, that
is, s/he only perceives edges and motion. Rather than
attending to the pertinent information in his/her
environment from which meaning could be derived s/he
attends only to irrelevant visual information in the
environment.
Our
experience is that interrupting and stopping sensory
play is vital to improvement of the individual while we
work to stimulate that sensory pathway to normalize it,
making the drive to do sensory play less and less. (10)
Basing
our work on Dr. Delacato’s findings, many
neurodevelopmentalists in the past 30 years have helped
many, many children improve function. New ways of
stimulating these sensory pathways to help normalize
function are always being found. Other professionals
have worked from the premise of sensory dysfunction
being the underlying cause of autism and developed
methods of identifying and stimulating a dysfunctional
sensory system to try to achieve normalcy. Dr. Jean
Ayres work on sensory integration (10) is an example of
the occupational therapy world taking up this battle and
applying their own knowledge to help more and more
children.
Metabolic Issues in Autism.
In
trying to understand the ‘whys’ of sensory dysfunction
in children labeled with autism, many have explored the
realm of environmentally caused metabolic disturbances
with fruitful results.
Many
children with autism have major metabolic disturbances
and are actually physically sick. This huge area of
research and many clinicians have helped improve the
lives of children with autism in the areas of:
implementation of special diets, supplementation for
nutritional deficiencies, correction of disturbed
metabolic pathways, chelating of heavy metals,
identifying and eliminating environmental toxins, yeast
and other pathogen overgrowth in the guts of these
children; including even live viruses and lesions in the
intestinal tract of some children. (12) Parents often
report strongly adverse reactions to foods, chronic
diarrhea or constipation, impaired sleep patterns,
strange rashes, fevers and temperature disturbances and
so forth. Parents can spend hundreds to thousands of
dollars searching for answers to metabolic issues for
their children. Our association of
neurodevelopmentalists has experienced good results with
Chembalance (13), which is a unique and inexpensive
approach to balancing blood chemistry and pH. We also
have seen the most consistent and significant ‘healing’
with the use of the Specific Carbohydrate Diet if
further intervention is needed. (14) Metabolic
intervention is often an important step in piecing
together a solution for the autistic child’s issues.
A Note
About ABA
ABA or
Applied Behavioral Analysis, has been touted as the only
scientifically proven method of helping children
overcome autism. (15) The intensive one-on-one
behavioral methodology is widely used at great expense
to parents and school districts. Reports of recovery
using ABA vary from 43% in the original work by Dr.
Lovaas to more generally 10-20% in parent discussion
lists. Some parents are mortgaging their homes and going
in debt to provide this intensive intervention for their
children. Such is the heart that our Lord has given
parents for their children. Because the diagnostic
criterion for autism is behavioral, a behavioral answer
is the world’s response to this diagnosis, and ABA is
THE behavioral based answer. Some children indeed have
improved using ABA, and from a neurodevelopmentalist
perspective it is understandable why this has occurred.
A child that is doing 20 – 60 hours per week of ABA has
no time to engage in sensory play, and as we stated
earlier, reducing or stopping sensory play is vital in
getting progress in development. By not reinforcing
negative activities, ABA allows the child to progress
instead of being stuck in his own sensory world. ABA
also provides much one-on-one input and attention.
Certain skills can be taught through much repetition,
and ABA is often able to move a child from the inability
to follow any directions to the ability to follow
one-step and some two-step directions. From our
perspective, how the child uses his/her brain and
sensory system can actually change the function and
structure of that system. Therefore these initial gains
can result from simply changing the use of the central
nervous system and as follows, the function of the child
to some degree. However, though some initial progress
may be made, root causes of autism, sensory distortion
and underlying metabolism, are not being directly
addressed.
So,
although ABA can be helpful in teaching autistic
children specific skills and getting some to begin
initial talking and engaging, it has serious gaps in the
intervention necessary to lead to long-term results.
Thus we have found it to be less generally helpful than
a more eclectic approach that addresses underlying
causes. The neurodevelopmental approach is focused on
changing the entire system from the foundation up so
that skills are acquired naturally because system is
progressing in a natural developmental hierarchy. This
is very different than a skill by skill teaching
approach which can tend toward isolated skill
development.
Parent-driven research into alternative therapies using
ABA with other approaches is outlined in such books as
Facing Autism, by Lynn Hamiliton and The Sound of
Falling Snow by Annabel Stehli.
An
alternative to the rigorous and expensive ABA approach,
one which many of the parents we have worked with and
have used successfully is the techniques of Dr. James
MacDonald. He trains parents to become communicating
partners with their children. (16) This natural
interactive methodology has helped many children improve
in language, communication and social skills in a very
playful and more easily generalized way.
Behavioral Training
Our
standards for behavior of children with autism are very
high. God’s call to parents to minister to and train
their children is not negated by a diagnosis of autism.
In the book, Too Wise to be Mistaken, Too Good to be
Unkind, Cathy Steere relates the journey of
discovering that her son was autistic and helping him
improve. It is heartening to read of the faith and
courage that Cathy Steere had in standing by God’s Word
and training her son to be obedient and controlled even
though it was hard for him and for his parents (17).
Training a child with autism to be well behaved and
obedient must be done with firmness and mercy; firmness
in having high Biblical standards and mercy by realizing
that certain situations are causing great fear or pain
and helping control the environment to reduce stress to
the child. Obedience training is absolutely necessary
implement a recovery program.
A
Conclusion of Hope
Most
children can be helped to improve and some can recover
to the point that they lose their diagnosis. As more and
more research is done, we pray that causes of the
diagnosis are found, the upward trend of increased
injury to children is stopped and that more and more
children are helped to reach their full God-given
potential.
Ultimately, our continued prayer is that all children
would be viewed as made in the image of God, not valued
by what they can and cannot do, but based on their
inherent value as human beings. All children deserve to
receive the help they and their parents need, to be held
up in prayer and the support of the church and community
to help them run the gauntlet of the diagnosis of
autism. As we learn more and move forward to help more
families with children with autism, we must never forget
the ultimate source of our knowledge and strength which
is Christ.
Philippians 3:14 “I can do all things through Christ
who strengthens me”
l.
Center for Disease Control Online, “Autism Information
Center.”
http://www.cec.gov/ncbddd/dd/aic/about/default.htm.
2.
Blaxill, Mark F., “What’s going on? The question of
time trends in autism.” Public Health Reports,
Vol. 119, Issue 6, November 2004, 536-551.
3.
American Psychiatric Association, Diagnostic and
Statistical Manual of Mental Disorders
4.
James M. Wolf, ed., Temple Fay, M.D:
Progenitor of the Doman-Delacato Treatment
Procedures, (Charles C. Thomas, 1968) 109-116
5.
Glenn Doman, What To Do About Your Brain-Injured
Child ( Avery Publishing Group, 199), 52-57.
6. Stanford University Online, “Neuroplasticity: The
Brain’s Natural Reparatory Ability,”
http://www.stanford.edu/group/hopes/rltdsci/nplast/u0.html.
7.
Carl H. Delacato, EdD, The Ultimate Stranger
(_____: Arena Press, 1974) ___.
8.
Ingo Steinbach, Samonas Sound Therapy (_______:
Techau Veriag, 1990)
9. Cyndi Ringoen and Marilee Coots, “Pieces of Speech &
Language”, http://www.ican-do.net, 2004.
10. Marilee Coots and Cyndi Ringoen, “Sensory Play,”
http://www.ican-do.net
11. A. Jean Ayres, Ph.D., Sensory Integration and
Learning Disorders, (Western Psychological Services,
1972)
12. Jaquelyn McCandless, MD, Children with Starving
Brains ( Bramble Books, 2003)
13.
www.chembalance.com
14. Elaine Gottschall, Breaking the Vicious
Cycle (The Kirkton Press, 1994)
15.
www.lovaas.com
16. James D. MacDonald, Becoming Partners With
Children (The Riverside Publishing Company, 1989)
17. Cathy Steere, Too Wise to be Mistaken, Too Good
to be Unkind ( Grace and Truth Books, 1999)
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