Autism: Facts & Treatments
As
the mother of a child who was diagnosed with autism in 2006, I now recognize
what a mysterious disorder this is to others.
It is a very complex disorder, and in those with a diagnosis of actual
autism, it is a serious disability because it affects so many aspects of human
development. This paper explores the
definition, causes, major treatments, and some of the myths surrounding
autism. The research is from highly
reliable and respected experts in the field of autism such as Lyn Koegel, Temple Grandin
(an autistic herself), The National Research Council on Autism, and The Neuropsychological Review Journal.
It is a long paper, so you might want to scroll to the end for the “tips on how to communicate with the autistic
child” if you are not that interested or in a hurry. The incidence of
autism is now 1 in 110 (CDC, 2009). A
part of my job for the past 20 years has been teaching students how to write
research papers. Little did I know how
much I would need this skill in my lifetime.
I wrote my first draft of this paper in spring, 2006, when I realized
that my child had stopped looking into my eyes and that every wheeled toy we
owned in the backyard was turned upside-down so that he could spin the wheels. We hope that you enjoy this paper not only for
its hard facts, but also for the humorous parent insights into our world as
well.
In
the past decade, there has been much study and speculation on the recent boom
in the number of
reported diagnoses of children with autism. Autism, a pervasive developmental
disorder, is a congenital brain condition that can severely or mildly affect a
person’s ability to communicate with others and to function normally in society
and is often accompanied by varying levels of mental retardation and behavioral
challenges. Hallmarks include a lack of motivation to communicate, a lack of
eye contact, restricted interests and repetitive behaviors. Many of the
behavior tendencies of autistic children are quite similar. For example, lots of kids with autism like to
shake their fingers (or strings, or people’s hair) in front of their faces for
a sort of visual stimulation. Many mouth objects way past the typical mouthing
years. Some have odd repetitive vocalizations or repeat certain words or
phrases constantly. Most are not interested in typical toy play and need help
with toy skills. Many of them love to
spin things (like Tommy). Some like to
spin themselves! Some never stop moving
(Tommy). Some tend to rock back and forth or bang their heads on things (some
kids end up having to wear helmets) (sadly, some are self-injurious and even
bite themselves); others can’t stand too much motion! Many flap their hands. Many are unable to
regulate their emotions (especially anxiety in new situations & places) or
read the emotions of others. They can take ages to potty-train (they are famous
for smearing), some like to tear things (like paper or play dough) to pieces
and then sift them….they love sand, and pouring water repetitively. Many have
difficulty with fine motor skills and so dislike using eating utensils, preferring
to eat with their hands. They are visually distracted to the extreme, not
seeing the forest for the trees. They don’t care what other kids think, so they
do weird behaviors without even noticing stigmas. They are extremely compelled to do their
“repetitive behavior of the year…” at any possible moment. They have severe
challenges with impulse control and often run away suddenly in public places. A
study from the 70’s showed autistic subjects being instructed not to do their
repetitive behaviors, then being shocked (on a grated floor) every time they
did their repetitive behaviors. They didn’t
stop. This is MUCH more complicated than dealing with an unruly child.
Sometimes we just have to laugh and pray to the Good Lord that someone out
there will laugh with us. (No you did
NOT just see my son stand calmly and pee directly into the pool; no he did not
just take his gumball out of his mouth, kick it down the hallway and then put
it back in his mouth…nor did he try to roll a box turtle like a ball…what? that
naked kid on the tennis court? Never
seen him before in my life!! J) Sometimes I
do just want to yell to the skies, “OK people, I’ve given him 30 Time Outs, 3
spankings, 78 serious talks, and we’ve left the place 80 times. YOU WANT A PIECE OF ME? Think you can do better? HAVE AT IT!”
But I never do.J
Thirty
years ago, in fifty percent of autism cases, the autistic person never
developed normal speech, and many never spoke at all. Because of their
difficult behaviors, autistic children were much more likely to be confined to
institutions than other disabled children. In the past ten years, with new
approaches to treatment, especially the insistence of developmental pediatricians
on early intervention (preferably before age three), the percentage of
autistics who learn to speak normally is closer to sixty-five than fifty. The current educational approaches to
treatment for autism involve gently intrusive teaching methods that “snap” the
autistic child out of his solitary world and require learning and participation
with others. Unlike normally developing children, autistic children are not as
motivated to imitate or communicate with their peers as other children are. In
fact, many researchers see this lack of drive to imitate and be like others (or
even notice others) as one of the largest hurdles of autism. Siegel writes, “In many ways, the absence of
imitation is probably one of the biggest learning handicaps of a developing
child with autism. There is SO MUCH he
should be taking in via observation of others” (2003, p. 114). This also
explains why one-on-one communication is key in early treatment and why they
tend not to do as well in group learning settings. However, learning to play
with other children must become part of their treatment at some point or their
new communication skills have no meaning or use. And like all of us, they need friends!!
The
standard “prescription” for an autistic child is a learning program that
includes at least 25 hours of “directed intervention” per week, usually in the
form of special education, speech and occupational therapy, ABA therapy and DIR-Floortime. According to Temple Grandin, (a
high-functioning fifty-year-old autistic who has designed nearly one-third of
the nation’s cattle-handling facilities and equipment) in her book Thinking in Pictures, “Several studies
have shown that twenty to twenty-five hours a week of intensive treatment which
required the child to constantly
interact with his teacher was most effective”(1996, p.46). Siegel’s research also supports this amount
of time in intervention, saying that “larger reviews of numerous studies
support the suggestion of no difference in outcome between children treated for
25 hours per week and those treated for 35 hours per week” (2003, p. 315).
Finally, the National Research Council on Autism “strongly recommends that
young children participate in a minimum of 25 hours per week of early
intervention services. These hours can
include a combination of
interventions focusing on behavioral, social and language development.” Most
developmental pediatricians recommend an intervention that includes ABA therapy
(planned lessons which emphasize one-on-one reward-based learning that will provide
your child the repetition and organization he needs to gain more cognitive
skills), special ed, speech therapy, occupational therapy (to develop motor
skills, especially fine motor), and Floortime (relationship-based, FUN,
child-lead communication therapy) Grandin gives hope for a good outcome by
suggesting that in children who have reasonably good awareness of their
environments and not too much mental retardation “Early intervention in a good
program can enable about 50 percent of these
autistic children to be enrolled in a normal first grade” (a quarter of those
diagnosed) (1995, p. 49). Regarding
hours of intervention, Koegel, in her amazing book Overcoming Autism answers a parent’s question about intervention time requirements with the
response “every waking hour” keeping in mind that it need not always be
formal—but the practice by parents of keeping the child engaged in learning
interactions at home can and should greatly augment formal intervention. If any parent with an autistic child spends
time researching the various therapies and treatments, she will find one common
denominator in the best outcome research studies of successful therapies: enormous
amounts of time spent in communication and play with the child. Another characteristic that the best outcome
children have is that they managed to acquire some language skills early on,
better cognitive abilities by age 5, and healthy emotional attachments to loved
ones.
However,
although the early intervention will improve the outcome, obviously the severity
of the autism and whether there is accompanying mental retardation also
matters,
and the symptoms may worsen or improve with
age. “One of the perplexing things about autism is that it is almost impossible to predict which toddler will be high-functioning. The
severity of the symptoms at age two or three is often not correlated with the
progress” (Grandin, 1996, p. 48). Temple Grandin
herself was nonverbal at age three and constantly rocked back and forth. She had all the typical symptoms of autism:
poor eye contact, a lack of (or abnormal) speech, the appearance of deafness,
frequent tantrums and noncompliance, a preference for being alone, and
inappropriate play with toys. Other
general symptoms include a lack of or late gesturing (after 20 months of age),
a lack of pointing to share interest, and repetitive behaviors such as rocking,
hand-flapping, wheel-spinning, etc. Grandin credits first and foremost her
mother, her governess, and good educators for “pulling her out of her autistic
world” and insisting that she participate in theirs. She began speaking at age three and a half
after a year of intensive speech therapy and participation in a special needs
preschool.
Mark
and I have personally have witnessed the unpredictable outcomes that Grandin
mentions regarding autistic toddlers. Two of our nephews were diagnosed with
autism spectrum disorders around age three.
The older boy (diagnosed with autism) is now ten years old and was
nearly nonverbal until around age 7. (He presently is beginning to speak in
short phrases to express wants but is not at all “conversational”). We continue
to hold high hopes for him. Upon meeting
him, it is absolutely clear that he is autistic by his complete self-isolation
and lack of awareness of others as well as his many odd behaviors. The other
(diagnosed with PDD-NOS) is now eight years old, has good speech, reasonable interest in others,
good play skills and is being mainstreamed in school in third grade. At first
glance, one would not guess that he is autistic because his symptoms are so
mild at this point. In addition, one of
my brother-in-laws is a fifty-year-old autistic man with the functioning and
verbal skills of a four-year old. My
mother-in-law recalls the hope and positive messages she received from
therapists and doctors when he was a toddler…but his deficits were too severe
to overcome. And I feel for my in-laws, who did not have the same experience
with public awareness of autism. In
fact, at that time, autism was blamed on the “refrigerator mother” theory of
Bruno Bettlleheim, who was later proven to be a fraud. My own son was diagnosed (September 11 will
now have an additional stigma for me) with autistic disorder. The developmental pediatrician predicted that
with a lot of Floortime (her first recommendation) at home and a good
intervention program, he might enter a regular Kindergarten. Bottom line—she didn’t know and was not
willing to put that prognosis in her written report because of the
unpredictable nature of the disorder. Parents
must be prepared for the possibility of any
outcome. It is crucial for parents
of autistic toddlers to join support groups and classes as early as possible. Other
parents of autistic children can help and provide not only support but good
(although varied and sometimes loony) advice.
And only these people can truly understand the mourning process and
recovery that invariably accompany the diagnosis of their child.
Autism
symptoms usually appear before age three, and most cases become evident around
age two and a half. Statistics have
suggested that a large percentage of children with autism also have varying
degrees of mental retardation (National Research Council, 2005), possibly
because of immature development of the cerebellum, abnormal development of the
amygdale (2009) and the limbic systems (which explains their love of moving
objects such as fans, etc.) as well as “unusual” brain circuitry; in other
words, the autistic brain is truly wired differently. Unfortunately, recent post-mortem autopsy
studies have revealed problems in the frontal lobes: too many neurons of small
size (the average brain has fewer and they are larger) as well as incomplete
layering of the hippocampus and problems in the corpus collosum which connects
the right to left sides of the brain. In
lucky high-functioning autistics, the brain will compensate for weaknesses in
some areas by strengthening others. It
is commonly suggested that Einstein, who didn’t speak until he was three and a
half and spoke poorly until age nine, may have been autistic. Temple
Grandin is a perfect
example in her amazing abilities to visualize the equipment she designs (Thinking in Pictures, 1996). There is a spectrum of severity. The highest functioning area on the autism
spectrum (though it is not called or considered classic autism) is called
Asperger’s Syndrome. These children are
highly verbal and often bright, but socially self-absorbed and may need social
skills help as a primary intervention.
The next diagnosis is PDD-NOS, which means that the child did not
qualify for a diagnosis of autism because he did not fulfill the DSMV
diagnostic criteria of: 1. speech and
language deficits 2. social/communication deficits AND 3. restricted interests
and repetitive behaviors.
One
difficulty for autistic toddlers (and their parents) is that because they are physically normal and often have good
gross motor skills (though most are at risk for fine motor skills), it is
initially difficult for others to recognize their condition. The parents of these toddlers often face much
criticism from people who consider them to be “worry warts”, etc. when the
toddlers are quite young because many of the symptoms of autism don’t become
evident until they are closer to five years of age. Many autistic kids often
look totally normal as babies, sometimes even the first 2 years of life. The latest study published in the Archives of
Psychiatry suggest that the abnormal amygdale growth causes autism in the
second year of life, explaining why so many of these children look “fine” for
their first 2 years. Statistics show
that around 70% of cases do not become apparent until the second year of life. Perhaps that might explain some of the
heartbreak that parents of autistic kids go through as they deal with their shock
and disappointment. Also, many people simply do not understand autism and its
possible negative outcomes (requirement for lifelong care, for example),
genetic risk, and the importance of early intervention in the face of clear
symptoms.
The early “invisibility”
of autism compounds the difficulties that the parents AND children go through
as they seek help and intervention. I
often wonder how my friends would have reacted if Tommy had had Down’s Syndrome
or cerebral palsy….people seem to be so much more sympathetic to disabilities
that they can see. I have several
friends now who also parent autistic children who have felt similarly….that
their friends didn’t really support them until the children were around 7 or 8
years old since by that time, when a child isn’t able to communicate and
function ‘normally’, it’s very clear.
But it’s quite hard, what we have to go through up until our loved ones
finally get it.
Some subtle early symptoms that pediatricians
look for these days include the inability to point (especially to show
interest) and gesture early on or follow a parents point or gaze.(joint
attention skills). And of course, a lack
of language. These days, they are able to diagnose children as young as 12
months!
The
genetics of autism are emerging, and promising pharmacogenomic treatments are
likely to become available in the near future. My husband and I attended a seminar
by an Emory geneticist who believes up to 15 genes (areas on those genes) could
be involved in autism, and the severity of the case depends how many genes are
involved. He claimed that to get a
diagnosis of autism, at least 2 genes must be involved. These days with a diagnosis, they do a
bloodwork test that actually tests for several chromosome problems. Although there are many other suspicious
sites on many other chromosomes (new discovery points to chromosome 2) and kids
with verbal apraxia and autism often
have mutations in chromosome 7 FOXP2), in the past several years, scientists have
only managed to locate the 3-4 most common chromosomal abnormalities of
autistics. One is a duplication in a
part of chromosome 15Q and the other is a deletion in a part of chromosome
22Q. Apparently, 22Q deletion syndrome
causes the brain to develop even more abnormally than in other types of autism
and is associated with much poorer outcomes.
There is a website dedicated to a support group for parents of 22Q
deletion children. There are many other
chromosomes associated with autism. The new genetic panel (called micro-array analysis-developed
July 2007) identifies about 30% of cases of autism. Another possible genetic cause for autism is
Fragile X, a genetic disorder that causes mental retardation and often looks
like autism at its onset. Unfortunately,
like the 22Q deletion syndrome, Fragile X is also associated with poor outcomes
in that it also causes more severe neurological damage, getting worse as the
child gets older as other genes are systematically “turned off”. A wonderful development recently is that
there is a clinical trial for a drug (created by geneticists and pharmacists)for
kids with Fragile X that is going VERY WELL! MIT researchers have reversed
Retts Syndrome (a female form of autism) in mice with another such drug!! There
is a neurodevelopmental pediatrician at the Marcus Institute who now claims to
be able to identify “12 types” of autism based on which chromosomal
abnormalities appear to be involved. Some autistic children with particularly
complex chromosomal syndromes cannot be cured by even the best intervention. People with 22Q deletion, for example, tend
to have more deficits no matter what the intervention is.
Sadly,
there is still no “cure” for autism (we will be the first to let you know since
Tommy is now enrolled in a CDC study by S.E.E.D. that is investigating the
causes of autism!). Any claims of a “cure” are more likely to occur in a child
diagnosed with PDD-NOS (which is why many well-known programs are more likely
to welcome children with a less severe diagnosis.) Some of these children DO
have good chances at being “normalized” according to a recent article in the Neuropsychology Review (December
2008, V. 18, #4) It gives me joy to
quote the following:
“Evidence
suggests between 3-25% of children
diagnosed with autism spectrum disorders LOSE their diagnosis eventually. Possible mechanisms for recovery include:
1.
Normalizing input by FORCING ATTENTION OUTWARD or
enriching the environment. (shared
attention/shared emotion/SHARED everything!)
2.
Promoting the reinforcement value of social stimuli (DIR-Floortime!)
3.
Preventing interfering behaviors. (redirect to acceptable ones!)
4.
MASS PRACTICE OF WEAK SKILLS. (ABA!)
5.
Reducing stress and stabilizing arousal. (Occupational Therapy/Sensory Integration
Therapy/Exercise!)
“Predictors
include:
1.
Relatively high intelligence/no severe genetic
syndromes/no mental retardation
2.
RECEPTIVE LANGUAGE
3.
verbal and motor imitation
4.
motor development
5.
diagnosis of PDD-NOS or Asperger’s Syndrome rather
than autistic disorder
6.
early diagnosis and intervention
*(mommy suggestions in parenthesis)
Back
to the general symptoms of autism, the main problems for all autistics are sensory issues, especially auditory
processing. The brain of an autistic has
difficulty processing sounds, and the degree of this difficulty may determine
the severity of the case of autism (Grandin, 1996). It is terribly important that the autistic child
be spoken to often to practice “listening” and responding. An obvious symptom at young ages is not
responding to
your name (often repeatedly). A noisy
daycare in which the child is not addressed much is the worst possible place
for an autistic toddler. The auditory
processing problem can increase to the point where it seems the toddler simply
can’t hear his name being called—almost a use it or lose it scenario. Thus, an
early intervention requires continuous efforts to communicate with the child, forcing him to hone his listening and
auditory abilities.
The auditory issues also explain why many
autistics have profound difficulties with communication—the reason is
twofold. The malfunctioning amygdala,
which controls the emotional system, the ability to read faces and emotions,
and the ability to share attention with others.
Apparently, the amygdala grows abnormally large within the first 2 years
of life, severely affecting the child’s motivation to communicate (Archives of
General Psychiatry, 2009). Many studies have suggested a ‘fight or flight’ tendency
in the autistic brain due to its inability to distinguish friend from foe. This may explain some of the anxiety toward
new situations and people. Secondly, it
is extremely difficult to speak normally when you can’t process sounds
properly. About 10% of autistics also have accompanying verbal apraxia, (Tommy
received this as a second diagnosis in 2007, followed by a third diagnosis of
hyperactivity disorder in 2009) which makes their pronunciation very unclear. These young children require an enormous
amount of extra help with their articulation on top of their language and
communication problems.
Other autistics also have visual processing
problems, which is why many of them favor their peripheral vision—because they
can see better out of the corner of their left eyes due to left brain deficits
and faulty connections between the hemispheres. Many do visual stimulation
behaviors such as staring at spinning objects. Nevertheless, because most
autistics have visual systems which are far better than their auditory systems,
it is important to incorporate visual aids in teaching and communicating with
them as toddlers; in fact, some autistics learn to read much better than they
can speak..
The
sensory issues autistics face explain why most developmental pediatricians will
recommend occupational therapy with a ‘sensory-based’ approach. The idea is that the sensory needs must be
met before the child can be organized, calmed, or stimulated
enough to
conquer other milestones. This would
require observation of the child and the development of a sensory profile. Is the child overreactive and hyper needing
to be calmed? Or underreactive and
sluggish needing stimulation? What
sensory experiences does the child gravitate toward: tactile (play dough, sand), gross motor
movement (jumping, running, climbing), etc.
While at first OT may seem a little like hocus pocus, on further
observation, you might notice that some children become MUCH more talkative in
water, or on a horse, or after jumping on a trampoline. You might notice that sifting sand calms a
child who is overstimulated. And these
observations are so useful for any parent of any child. Never underestimate the mind-body
connection. The recent studies that show
brain function’s relation to the act of crawling as an infant are useful in
demonstrating the importance of early motor movement to the brain. And moving a child with motor problems
through an action enough times can actually enable him to eventually master it
himself. It just takes an enormous
amount of work. Ask any special ed
teacher. However, sometimes the OTs get
carried away doing ONLY sensory stuff!
Remember that most autistic kids have fine motor problems and will
require a GREAT DEAL of help with even simple motor tasks. It will take them much longer to dress themselves,
become potty-trained, cut, write, etc.
Their sensory difficulties also partly
explain the love of autistics for routine.
When your sensory systems are mixed up or overreactive, the world can be
a noisy, confusing place; thus, a comfortable routine or repetitive behavior
can help you maintain your calm. An interesting theory presented in Grandin’s
book is that the timing of the onset
of the sensory problems of autism may determine the outcome or severity; for
example, she suggests that children with very early onset of the sensory
problems may have more damage to the amygdala whereas in children whose sensory
processing difficulties appear later, emotions are more intact but severe language
difficulties still occur (1996, p. 40).
Perhaps
most difficult are the learning problems.
Children with autism have severe deficits in the areas of attention and
motivation. Most of you know a child
with ADHD. Multiply that by 1000, add a possible dash of mental retardation, subtract 5 gallons of motivation to learn like
other children, subtract any effect
that peer pressure could possibly have, and you might just begin to understand
why children with autism are SOOOOO hard to teach. They require enormous amounts of one-on-one
to learn even the basics (due to their severe deficits in joint attention). Most cannot sit to be read to and may need
behavioral help to concentrate at all.
(Tommy loved books, thank goodness, up through age 2 and a half, and
suddenly had an enormous joint
attention regression…..which was and still is a very difficult thing). It is a disability that includes
communication, emotions, language, and learning.
Recent years have demonstrated an
enormous increase in autism diagnoses from
one in a
thousand to one in one hundred fifty. Part of the controversy related to the
extreme increase in diagnoses is that some parents and professionals believe
that in the 1990’s when the CDC increased the number of required immunizations
for children, they failed to do adequate research on the effects of the
increased amounts of the preservative thimerosol (a mercury derivative) on
infants’ brains. Some believe that this
preservative has caused the increase, though there is no decisive evidence on
the case. In fact, the latest study done in Canada on more than 500,000
children showed an increase in autism
after thimerosol was removed from
vaccinations. Others think that the spike in autism diagnoses may be related to
the fact that the definition of autism has been widened in the past decade to
include five “autism-spectrum disorders”.
I tend to agree with the latter since I see many children at Tommy’s
program who are verbal and social.. It
turns out that PDD-NOS means that the child has not fulfilled the diagnostic
criteria for autism and so they only have several of the symptoms. Many of these children are almost indistinguishable
from the general population. And
children with Asperger’s Syndrome would not have been diagnosed 20 years
ago. They would have been called “nerds”.
Whatever the reasons for the increase,
the important focuses are clear. The
scientific and professional communities, together with parents, must demand
adequate research on environmental agents that may cause autism in genetically
predisposed children. They also must research the effect that the new
definition of autism has had on numbers diagnosed. But perhaps most importantly of all,
therapists, special educators, and developmental pediatricians need to educate
parents on the best strategies to use in early intervention to help their
children achieve the great gifts of emotional attachment shared interests with
others, and speech and language skills. In addition to special education
programs provided through states (many of them outstanding),other therapies are
also available. Some seem quite contradictory, but with extensive education and
practice, observation of additional therapy with professionals, and an
understanding of what seems to work with each individual child, parents can not
only choose appropriate professional help, but also incorporate communication
strategies into their everyday lives with these children that can make an
enormous difference in whether and how well they achieve communication skills.
In her book, Helping Children with Autism
Learn, Bryna Siegel points to research that shows direct links between
parent involvement in treatment and positive outcomes. She states that some parents have a gift for
making their autistic child more aware of the environment and taking advantage
of ‘learning moments’. “Every moment
becomes a teaching opportunity. They know how hard to push (just enough but not
too much), so that learning and a lesson are not the same thing” (2003, p.445).
It is a delicate balance since children with autism are extremely independent,
impulsive, and generally noncompliant, causing much grief to parents and teachers
who must constantly attempt to control the autistic child’s lack of impulse
control. Children with autism may not
express as much curiosity in things around them, but “very responsive parents
of children with autism are able to tune into a much fainter signal.” Siegel also points out, “In a study we did of
very high responders to very intensive early interventions, a common
characteristic of the ‘most-improved’ kids was that they had parents who
wouldn’t leave them alone”. This means
decreasing the amount of time they would spend spinning wheels or in repetitive
behaviors and increasing the time spent on positive
interactions, learning, and fun that is not related to the repetive behavior
preferences, especially isolating behaviors, of the child. These parents will generally be the ones who
participate in parent-training courses, choose therapists very carefully,
observe school programs where the child may be enrolled, find bright college students to do
DIR-Floortime, speech, OT and ABA with their children, cultivate peer-buddies
who can help their children at school and pre-teach school assignments at home
(p. 446). These parents understand that
“intervention” means that ALL the meaningfully engaged activities a child
experiences count, not just those with paid therapists. It is the activeness of the child’s mind that
is important. Siegel adds that “the
problem for children with autism is that they tend not to fill “free” time very
constructively, and so intentional teaching situations need to be contrived to
create the texture of a diverse and mentally stimulating life” (p.445).
Available Treatments
There
are many philosophies and approaches to treatment of communication disorders,
so parents must educate themselves and observe what works best for their child
in order to choose what will probably ultimately be a blend of several
therapies to encourage speech in the child. All autism interventions require
speech and occupational therapy in addition to special education programs that
concentrate on speech and play skills. Also crucial in autism interventions are
Applied Behavioral Analysis (the most empirically supported intervention for
children with autism to date), Floortime, and TEACHH (used in schools). Some favorites of ours are Pivotal Response
Training (a type of ABA
training which is done in the child’s natural environment and involves the use
of natural reinforcers), incidental learning techniques, Floortime, and ABA. One of the greatest failures, in my opinion,
in autism treatment, has been the failure of autism programs to address the
emotional deficits of autism in their treatment. These children need to be pulled in
emotionally to our world. They need to
be taught to read the emotions of others, to empathize, to show interest in
others….to look into our eyes and see what we feel.
Early
intervention, particularly one-on-one (since autistic kids have nonexistent
attention spans) is crucial. Scientific
research has proven that although the brain has incredible plasticity, and in
some areas, can grow and change throughout life, there are still “windows” of
opportunity for various skills, and the speech window is age five. Language can
still develop throughout life, especially Wernicke’s area of the brain, which
involves receptive vocabulary. In addition, some studies show resilience in the
speech structures through age ten, but most developmental pediatricians agree
that the first three to four years of a child’s life are crucial language years
for Broca’s area of the brain, which is used to produce speech. Thus, the
hard decisions about therapy are made in hopes that the early intervention will
have the hoped for consequence. “My
child will be among the sixty-five percent that speak, and NOT the thirty-five
that do not.” It is so important to remember that everything you do (and
everyone does) counts! Research shows that everyday
interactions can change and improve the brain structure of a
child (Greenspan, 1998). An autistic brain may have weak circuitry
between intent (affect and emotion) and purposeful speech and communication with
others. Seek to strengthen those circuits by showing the child that playing,
talking, and being with others can be fun
and rewarding. Perhaps those neurons and synapses which by
age four are somewhat soldered in Broca’s area have a better chance to develop
speech as well as creativity if the child is involved in bright, spontaneous, joyous interaction during playtime as much as
possible. Greenspan suggests that traditional ABA Therapy, while it is helpful in
training autistic children in basic skills and knowledge, may not be useful in
the area of building relationships and encouraging spontaneous communication, which according to the National Research
Council should be the number one intervention priority for young children with
autism. However, ABA has been proven effective in numerous
studies in developing cognitive and adaptive skills and in reducing problem
behaviors. ABA
also may also be effective in developing functional communication (building
vocabulary, for example)! It is an extremely valuable tool in the “intervention
tool chest” and is highly recommended for at least 10 hours per week as part of
the required 25 hours, as long as the work in joint attention skills is
positive and emotionally rewarding for the child.
.
Another important point about intervention for autism is that though prescribes
spontaneous interactions, insistence for responses (given with good will in a
positive tone) is still a necessary element.
If your child does not answer your question, ask it again, simplify it, push
gently for a response. Do whatever it
takes to close that
circle of
communication. As your child learns that
responses are expected of her, she will become more attuned to the needs and
initiations of others and able to participate in conversations. Many parents unconsciously do what is easiest
for their special needs child (not require responses, ask only yes/no
questions, rely on rote word play (ready, set, _____) to extract speech.) Some parents just give up. It is so
hard when they are young and won’t even turn around when you shout their
name 8 times. You feel such grief and such intense worry….but you have to keep trying to get their attention. And they won’t play with other kids so guess
what? You HAVE to keep playing with them.
And sometimes you will find yourself doing weird things WITH them to get
their attention (you will steal their spinner and spin it) and it works! You’ll get a smile! You’ll keep trying. And if you’re lucky, the day will come when
he will turn to you with a smile only the 3rd time you call his name
J You will imitate him, make him notice you are
having even more fun than he is sifting dirt!
He will decide you are alright. And
low and behold, he will WANT to play with you!
Another
important concept presented by many interventionists is doing activities with
your child that require use of many senses at once (to help integrate the use
of all of them since autistic are noted to use only one part of their brains at
a time (not multi-taskers, to be sure, kind of like men). They do call autism the “extreme male”
disorder.
Home Time
In her book, Overcoming Autism, Koegel
also reminds parents that they can be
extremely
effective additional “therapists” in the lives of their autistic children due,
of course, to parents’ unsurpassed motivation, love, and desire to communicate with
and help the child. However, it does require persistence, time, research,
preferably some parent classes or instruction by speech and occupational
therapists, and a lot of just plain the hardest
work you will EVER do in your life. Most
people don’t have a clue how difficult it is to get the attention of these
children. Koegel also explains that
“interactive therapy” need not always require a lesson plan. Try to get your child help with the laundry
and talk about the clothes and colors.
Discuss lunch while you make it together. Pull weeds, water the flowers, wash the car. Gently persist in getting your child’s
attention to complete tasks together, like feeding the dog, loading the
dishwasher, etc. Your whole day should
not have to revolve around the “therapy”, and your child needs to experience
the world of the whole family—not be placed at the center of everyone’s
universe and activities. Also, do not fail to teach survival skills and good
manners. By doing everything FOR a
special needs child, you only handicap that child further, well-defined in Koegel’s
descriptions of “learned helplessness”, which is the sad fate of so many
special needs kids. Try to keep up as
best you can with what is expected of her age group and be sure to use discipline
(though you will probably need help from a board-certified behavior analyst for
advice on what will work) for unacceptable behavior because autistic children’s repetitive
tendencies tend to make behaviors VERY hard to decrease and overcome. It is something you will probably need
professional help with during your experience raising your child. (and relief and help for yourself should
definitely be a part of it!).
Also,
the importance of the child’s family and close friends cannot be
overstated—each and every person that takes a loving role in her life can be a
part of what motivates her to communicate more and more. Reach out and bring people into her life as
much as possible, and help them know how to better communicate with her. Treatment providers must remember that the
emotional deficits which accompany autism require greater effort in
“connecting” with them, and is of crucial importance in every setting.
Also, consider providing an environment rich
in sensory experiences to your child.
Early childhood educators stress the importance of touch so much—let
your child dig in the dirt, play with play dough, sand, and as many textures as
possible. Expose your child to the
swimming pool-there is a reason why water therapy is so popular these days….it
wakes children up and helps them speak and express themselves! And swing, swing, swing! Also, according to Time (May 2006), most autistics experience a great deal of anxiety,
so for health and emotional reasons, vigorous exercise is recommended several
times a day. Jumping on beds or
trampolines, running and hiking, dancing.. On the same note, many autistics
find relief in deep pressure. Grandin went to the lengths of designing a
“squeeze machine” for herself in which she could apply deep pressure to her
entire body. Some special education
teachers keep a large bean bag in classrooms to “squish” the autistic children
in. Deep, strong hugs from a parent can
go a long way. Some occupational
therapists recommend Auditory Integration Therapy, which is basically music
which is modulated to stimulate the brain and supposedly can help with auditory
processing problems. Grandin states that
the research support is minimal for this therapy; nevertheless, with all the
studies that show how music enhances brain function, why not provide your child
with many sorts of interesting music? In case of auditory oversensitivity,
Grandin insists that the child should control the volume (1996). Another goal should be to increase the
variety of activities your child can enjoy and enhance her play skills by
teaching her how to operate a continuous variety of toys, big and small. This can help to develop her fine and gross
motor skills in fun ways and have more activities that she can participate in
with other children.
Tips
for Family & Friends
Build on the positive and join him in
what he CAN do!! And follow HIS lead
sometimes!! Tommy can swim, kick
balls, make basic requests for items and actions, love, smile, laugh, ride a
bike, hike, climb, run, jump on trampolines, toast his own waffle, spin anything, play on playground equipment,
feed the dog, etc. Get face-to-face with
the child to communicate and get her
attention before trying to speak to her.
She may not respond or hear you otherwise. Also, don’t
insist on hugs and try to let the child take the lead in that area. It might be wise to start with high fives and
work your way up to hugs, but get there if you can!! Try to use visual aids in
your communication when possible. Speak a little more slowly than normal
and avoid strings of complex sentences unless you are simply telling her about
something but not expecting responses. Speak in words & phrases that the child
can imitate or respond to and speak about the present! Put your activities in
music and words; music is a right-brained activity, and autistic kids are more
right-brained. If the child doesn’t answer a question, ask it again in a
sing-song voice or try to regain her
attention by singing, “Where is Jenny, where is Jenny?” (to the tune of
“Are You Sleeping” for example). Use prompts like “Ready, Set, ______”
before beginning an activity. Always offer choices between 2 or 3
items and withhold the item until the choice is made. Offering the most attractive choice first helps the child to
think more. Many autistic kids are
echolalic and will just repeat the last word they hear, so if you put the
better choice first, it forces them to break this habit and think more about
the choice. Withhold toys and activities
until words are provided for the activity, even if it is just an incoherent
‘yes’! Support the parents by NOT
providing an object that the child will do repetitive behaviors with if it is
clear that they are not providing that item at the time. Encourage turn-taking activities.
Many research studies suggest that turn-taking can positively affect
brain-development and improve social interaction in kids with autism. Encourage eye contact in positive ways (and don’t allow anyone to
do it in a negative way, for example, say, “Look at me!!” enthusiastically and then do something she will
like, or give her something she will like. Tell her how much you love it when
she looks into your eyes. Gently say, “Look
into Soren’s blue eyes and tell him By by” to try to get your child to have eye
contact with others. Physical horse play is a big deal for
kids with autism who are unable to speak and understand you yet, but want to
communicate. This will get the laughter, the eye contact, and the connection
you are after until language and/or comprehension arrive. Another standard is playful obstruction-if the child is
performing a solitary repetitive behavior, redirect or block it in a fun way
(provide a fun alternative immediately to avoid tantrums. Count to 10 while waiting for answers. With auditory processing delays, some
autistic kids just need more time to answer a question. Wait awhile before asking again. Most of all, be fun. Be a part of the reason the child wants to
try harder to communicate. And when
you can, just chat with her as you would
a friend. As one of my special
educator friends explains, many of these kids can’t express themselves, but
they can hear you, and you might be surprised at how much they hear! So make it interesting and keep trying, for
her sake.
Demonstrate and engage in as much
pretend play as possible. It is
recommended to help children with autism develop abstract thinking skills, and
it is an area of deficit for them.
Conclusion & Summary
Educate
yourself on all the available therapies and be proactive. Search for the most effective special
education programs & teachers in your area.
There are many special education teachers with years of experience who
are adept at not only the science but also the art of developing communication
and play skills in special needs children.
Thank your child’s teachers on a regular
basis. There is no field more
difficult and no people more dedicated than special educators of all kinds. Participate firmly in your child’s IEP
process by providing objectives (along with the rest of the IEP team) that will
be reachable and meaningful for her in ALL settings over the school year. The
National Research Council’s book Educating
Children with Autism is a fantastic resource for parents and schools
regarding programs and goals. And follow
your instincts.
Good
reports of ABA
(Applied Behavioral Analysis) abound, especially for ‘kickstarting’ language,
expanding vocabulary quickly, and teaching skills of all sorts. ABA
can also aid in retaining the child’s attention (critical skill) and expanding
his cognitive abilities. It may not
speed up spontaneous language (the real problem for autistics) unless you have
a truly excellent therapist, but it seems that staying abreast cognitively
would certainly help them socially in the long run. In fact, the major weakness
of behavioral programs has been their over attention to behavior and their
lack
of attention to spontaneous functional language -- which is the number one goal
for young children with autism, according to the National Research Council. Most would agree that another major
weakness in traditional behavioral approached is that the emotional deficits
and withdrawal that often accompany autism are not treated, or indeed even
acknowledged. Only in Pivotal Response
ABA-in which affect scales
are used to make sure that the children are happy and engaged-(used at Walden
at Emory in Atlanta)and. In other words,
the treatment providers fail to have normal conversations and relationships
with the children…follow their lead, build their motivation to communicate, or
make positive affect and emotional engagement a part of the teaching
procedures. They simply don’t play with
the kids!!! So DIR-Floortime or Pivotal
Response ABA should be large parts of the child’s treatment.
Moderate amounts of ABA can only help, though
some experts believe that too much table-top ABA (40-hour week regiments, for
example) contributes to behavior problems, especially if the therapists
improperly address the emotional deficits and fear of eye contact that must be
treated carefully to build the child’s motivation to communicate with others. Anyone who has seen a traditional ABA therapist say in a
stern voice to a child with autism, “Look at me!!” and seen the fear and
unhappiness on the child’s face will think very carefully about the ABA
therapist they choose and their methods of teaching.
Ultimately, research has shown natural
learning experiences generalize
better (Pivotal Response ABA
& incidental learning), but are more time-consuming and difficult to
execute. The great teachers will
learn how to bring out joy and the desire to communicate in their autistic
students, not just “fix behavior.”
Although special needs children may not always
have the outcomes parents hope for, the past decade of change in treatments has
definitely made a positive difference; especially the insistence on early
intervention, which pediatricians used to be loath to recommend. The let’s wait and see until he’s three
attitude has not paid off for those diagnosed in the long run, and if there are
warning signs and a genetic history in the family, the earlier the better is the new anthem among professionals. Prepare yourself. These early years of extra help will benefit
your child, and she will not even remember them! If appropriate therapies are given with love,
good will, and a gleam in the eye, who knows what the future might hold for
your very special child!!
Now,
after 3 years of coming to understand and accept Tommy for who he is, we can
tell you, it is not an easy journey, but we can tell you also, there is no one
we would rather take it with than him.
There is so much fun to be had and so much love in that heart. God
provides amazing compensations. Those
blue eyes see the world in a very different way, and as hard as we all may try
to educate him to be “one of us”, he will always also be a kind of angel, a
little apart from the rest of us, not a malicious bone in his body, full of
mischief and joy to last a lifetime. Thanks so much for your time!! References
Grandin, T. (1996).
Thinking in Pictures. Random House Inc. New
York, New York
Greenspan, S.I.
& Wieder, S. (1998). The Child with Special Needs. Da Capo
Press.
Koegel, L.K.
(200 ). Overcoming Autism.
Moor, J. (2002).
Playing, Laughing and Learning with
Children on the Autism Spectrum.
Jessica Kingsley Publishers, London & Philadelphia.
National
Research Council. (2005). Educating
Children with Autism. National Academy Press. Washington,
D.C.
Piven, J. (May, 2009).
Archives of General
Psychiatry. Research Study
Siegel, B. (2003).
Helping Children with Autism
Learn. Oxford
University Press. New York, New York.
Wallis, C. (2006, May 15). New insights into the hidden
world of autism. Time Magazine
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