www.autismeye.

com 9 Aut i sm| eye I ssue 8 2012

Parents stories Parents stories
concerned, too, when I noticed that
Josh frequently began to stare into
space for brief intervals.
During the staring spells, lasting
around five seconds, nothing I said
or did could divert his attention or
penetrate his hypnotic gaze.
I began to wonder if he was
experiencing a form of absence
seizure, which was familiar to me
from nursing school. I frantically
called our paediatrician for
guidance; he suggested that I
begin to look for answers in an
attempt to diagnose and evaluate
Our story begins with Joshs
early childhood, which initially
seemed to be normal. He
developed language and was
engaging meaningfully with me.
His eye contact was good and I
noted glimpses of appropriate play.
As Joshs 18th month of life
approached, I began to notice the
few words that he used up, ball,
cat and juice were being spoken
less and less often. Instead of
language flowing from him, it
appeared that language was
flowing away from him. I became
8 Aut i sm| eye I ssue 8 2012
Could your
child be
having
seizures?
Caren Hainess 24-year-old son, Josh, was
diagnosed with autism as a young child. She relied
on her training as a registered nurse to get to the
bottom of his perplexing behaviours. Eventually,
she discovered that he had been suffering from
silent seizures, which can be treated easily and
with dramatic results. Caren, author of the
ground-breaking book Silently Seizing, explains why
she believes that many more children with autism
are experiencing an undiagnosed and highly
damaging seizure condition that should be treated
As I looked at
the doctors
impassive face I could
barely see him
through my tears,
which began to fall
steadily onto my shirt
www.autismeye.com 11 Aut i sm| eye I ssue 8 2012
what might be underlying my sons
obvious abnormal development.
The first stop on my journey of
discovery was to visit an audiologist
to see if Josh was losing his
hearing. After placing huge black
headphones on his tiny head, she
began to send sounds, hoping for
a response. As the sounds were
piped in on one side and then the
other, he became annoyed and
protested loudly. It was easy to
conclude that he could hear.
Our next step was to visit a
speech-and-language expert for an
assessment. The testing consisted
of interacting with Josh using
colourful objects to match, identify
colours and shapes, and to assess
his play skills. She retreated to
another room with Josh and after
the testing he emerged, looking
sleepy and dragging his favourite
fleece blanket. I was told his
speech skills coincided with the
skills of a child approximately one
year younger, and the expert
suggested immediately beginning
a trial of anti-seizure medication.
Despite the absence of EEG
confirmation, she considered that
his clinical presentation signified a
seizure disorder. This doctor told
me that once the seizures were
treated he would begin to speak
and learn.
Josh began a trial of the anti-
seizure medicine Tegretol.
Unfortunately, Josh immediately
developed an allergic reaction that
produced a rash, bringing our use
of the medication to an abrupt halt.
By coincidence, the next day I
had a long-awaited appointment
with a neuropsychiatrist (an expert
on disorders with both neurological
and psychiatric features), who I
was told was a specialist on
developmental conditions. After an
initial chat, the doctor brought Josh
into a room filled with enticing toys.
He attempted to engage Josh in
sorting objects, cooking food in a
make-believe kitchen and playing
memory games.
Josh seemed briefly engaged
Parents stories
weekly sessions of speech therapy.
I continued to worry about the
staring spells, which, although
brief, were intense. We made an
appointment with a local neurologist.
After careful questioning, the doctor
suspected Josh may have absence
seizures and explained that a
seizure is an abnormal electrical
discharge deep inside the brains
temporal lobe, and that this type of
seizure often interferes with
language and behaviour.
Electrical activity
She performed an EEG
(electroencephalogram), carried
out by placing metal leads on the
surface of the skull to record
electrical activity inside the brain.
The test result was normal, but she
cautioned us that often electrical
discharges originate so deep inside
the brains temporal or frontal lobe
that they can elude detection.
The neurologist felt that Joshs
significant language regression and
numerous staring spells warranted
A seizure is
an abnormal
electrical discharge
deep inside the brain
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www.autismeye.com 13 Aut i sm| eye I ssue 8 2012
Parents stories
with him at times, but I recall
noticing that he seemed to be
tuning out the world. As I watched
the scene unfolding, I surmised that
Josh was sleepy, maybe a tad
stubborn and a bit cranky from the
itchy rash.
The doctor had a different
assessment altogether. He ushered
me into his office and in a whisper
told me: Your son Josh has
autism. He based his assessment
on Joshs significant cognitive
declines, along with behavioural
abnormalities, language deficits
and social difficulties. He said the
majority of people diagnosed with
autism have an associated
intellectual disability.
As I looked at the doctors
impassive face I could barely see
him through my tears, which began
to fall steadily onto my shirt. Without
question I decided that he must be
right. After all, he was the expert on
developmental disorders. This
doctor discarded the idea of
returning to the neurologist to treat
the invisible seizures and,
tragically, I did too. Based on his
minimal assessment, he came to a
diagnostic conclusion and, in doing
so, changed our lives forever.
Misdiagnosed
Years later, as Joshs behaviours
became intolerable, I grew to
suspect seizures once again. I read
about temporal lobe epilepsy and
Josh had every symptom. I also
read how often this disorder is
misdiagnosed, even in people with
typical intellectual development.
I began to fit the pieces of our
puzzle together and realized that
Josh had a seizure disorder all
along. As it had become more
severe, its manifestation developed
way beyond staring spells. The
more severe seizures produced
vicious rage and self-mutilating
behaviour. He gave himself such
deep skin bites that the wounds
have left his skin forever scarred.
Knowing what I do now, I agonize
over a wish that I could go back in
time and change the choices I
made. I had two roads before me
and I chose the wrong one.
Perhaps the spectrum of
behaviours and disturbances that
we know as autism is not a single
disorder; it may be a series of
behaviours and challenges that
have many underlying conditions,
but share some common attributes
such as seizure, disturbances in
language development and
unusual behaviour.
There is mounting evidence that
genetic mutations, causing
permanent changes in our DNA,
are at the root cause of autism.
Thus, many genetic disorders
greatly increase the chance a child
will develop features similar to
autism, since many of these
disorders produce similar traits.
Seizures are commonly found in
many of these genetic disorders.
In my book, I highlight the more
common genetic disorders that are
associated with autism. These
disorders need to be diagnosed
accurately because many of them
carry specific intolerances that
need to be understood.
Traditionally, the day a child
receives the diagnosis of autism
has marked the end of the parents
quest for answers. Instead, it
should be the beginning of the
search. When parents are told their
child has autism, they need to ask
the question, why? Language and
behaviour are in the brain and
when there is an obvious problem
we need to start looking for the
reasons. Autism merely describes a
set of symptoms: we need to find
out what is going on inside every
childs brain who receives the
diagnosis of autism.
Metabolic issues
The very good news is that once
seizures are identified and treated
the person can function at a much
higher level. Additionally, when the
correct genetic disorder is
identified, treatment can be aimed
at the specific problem. For instance,
the genetic syndromes called
inborn errors of metabolism can
produce the same symptoms seen
in autism. These metabolic issues
are often associated with specific
intolerances to things such as
carbohydrates, fat or protein. The
exact disorder would be important
to discover so that foods with these
substances can be avoided.
I wrote Silently Seizing to help
parents understand that many of
the troubling behaviours and
communication delays seen in a
child diagnosed with autism might
be caused by silent seizures, which
are easily treated with medication.
Conversely, seizures left untreated
can get much worse, predisposing
children to self-injurious behaviour,
along with a psychotic disorder that
can coincide with long-standing,
untreated epilepsy.
Additionally, a schizophrenic-like
psychotic disorder can emerge
when the seizures are normalizing
via medication, according to Dr
Richard Restak, a neurologist who
has made an in-depth study of the
many facets of simple and complex
partial seizure. The process is
called forced normalization. This
type of psychosis can become
more of a problem than the
seizures; therefore, it must be
recognized when it appears and be
treated separately with anti-
psychotic medicine. It is crucial to
understand this connection so that
both maladies are properly treated.
It is important to remember that
silent seizures are sub-clinical,
rarely show up on an EEG and
produce psychiatric symptoms.
Caren Haines: Once seizures are
identified and treated the person
can function at a much higher level
This doctor
discarded the
idea of returning to
the neurologist to
treat the invisible
seizures and,
tragically, I did too
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This conundrum can lead doctors
to come to the wrong conclusion.
Sub-clinical seizures need to be
diagnosed clinically: that is, based
upon the symptoms the person
exhibits and the pattern in which
they occur. Seizures often present
in the same manner every time.
Some of these signs of absence
seizure are:
Staring spells that can be a brief
as five seconds
Eye blinking or eye flutter
Regression of previously
acquired skills, such as losing
language
Severe tantrums
Self-injurious behaviour.
Dr Nancy Minshew, a neurologist
and autism expert, cautions that
many of the conventional tests
conducted when seizures are
suspected can return normal
results, despite epilepsy being
present. She highlights the episodic
nature of these seizures, which
often begin and end suddenly.
Partial seizures can either be
simple (awareness remains intact)
or complex (awareness is absent).
A person can have one or both
types and these can lead to the
more familiar kind of generalized
seizure, which causes a person to
fall and convulse uncontrollably.
Partial seizures can be
recognized by astute observation.
The signs to look for are:
Sudden behavioural changes,
with a complete cessation of the
previous activity
Sudden eruption of fear, which
can manifest itself as screaming
or speaking gibberish
Enlarged pupils
Staring spells
Clicking sounds with the tongue
Clenching teeth and biting down
hard on skin or an object
Loss of awareness, with an
inability to comprehend language
or use it appropriately
Movement of leg or arm as if
riding a bicycle
Sensory disturbances, such as
powerful hallucinations in seeing,
hearing or smelling things that
are not there
Aggression without provocation.
This can be seen in a rage attack
that produces self-injurious
biting, or in hitting out as if
fending off an attack.
During a seizure a person loses
contact so profoundly with the
environment that they can neither
control the seizure nor their
responses. When the seizure is
mild the behaviour is often
misconstrued as zoning out or
being lost in thought; however, a
person merely lost in thought can
respond normally, while a seizing
person cannot. After a seizure there
can be a period of confusion
lasting for hours and/or a sudden
onset of sleepiness.
Diagnostic work-up
It is important to ask the physician
for a more comprehensive
diagnostic work-up. If a seizure
disorder is suspected, we should
be collecting behavioural data on
every child diagnosed with an
autism spectrum disorder. All of the
behaviours these children exhibit
need to be carefully examined.
Additionally, any genetic disorders
that resemble autism can be
identified through blood testing.
It is essential to determine if the
maladaptive behaviour is in
response to wanting something,
which would be treated with
behavioural techniques, or is an
episodic and random behavioural
change. The latter would indicate
the behaviour is completely out of
the childs control and could be the
result of a sub-clinical seizure. If
caught early, sub-clinical seizures
are easily treated and preserve the
function of the developing brain.
The first line of treatment for a
seizure disorder is an anti-seizure
medication given at a dose
considered to be therapeutic. For
those who are silently seizing and
are treated early with anti-seizure
medication, I can share the
endorsement of a good number of
physicians that many of these
children begin to show incredible
gains in expressive language and
comprehension. There is a good
chance that these children will
enjoy the quality of life their parents
dreamed for them. This is a gift
beyond measure.
Dr Fernando Miranda, a
neurologist who runs the Bright
Minds Institute in California, tells me
that 50 per cent of the patients that
come to him with the diagnosis of
autism are actually suffering from a
sub-clinical seizure disorder. For
these patients, silent seizures are
the cause of the constellation of
behaviours we have come to refer
to as autism. Using advanced
techniques such as a form of EEG
called a DEEP, which captures
more information, Dr Miranda can
identify these wayward electrical
discharges. They can be treated,
leading to dramatic improvements.
For some patients, the diagnosis of
autism is lost altogether.
I hope this article provides
Autism Eye readers with another
piece of the autism puzzle. We are
fortunate to live in a time when the
silent seizure/autism connection is
finally out in the open. Let us
empower ourselves with knowledge
and help our precious children to
become the best they can be.
By Donna Jordan
If you suspect that your child
is having seizures, contact his
or her doctor and ask for a
referral to a specialist in
epilepsy. Make sure you are
armed with the right
information about detecting
silent seizures. As Caren
points out, EEG testing has
limitations and can be
negative in some cases.
To gain a more accurate
diagnosis, one has to look deeper into the suspected
seizure activity. In her book Silently Seizing, Caren
points to the way that monitoring is helpful and is
best carried out when a patient is admitted to hospital
and has a continuous EEG for a period of time,
usually three to five days. As an option, patients can
be given an ambulatory EEG, which involves a small,
portable machine that can be carried in a shoulder
bag; leads sprout from it that attach to the scalp.
Any seizures that occur during testing are
recorded, as long as they occur in an area of the
brain where the electrodes can detect them. A more
recent technology, dense-array EEG, is reported to be
better at picking up the erratic electrical impulses.
What parents can do
Knowing what
I do now, I
agonize over a wish
that I could go back in
time and change the
choices I made
www.autismeye.com 15 Aut i sm| eye I ssue 8 2012
Parents stories
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Asperger syndrome, complex needs and learning difficulties.
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