www.autismeye.com 9Aut ism|eye Issue 8 2012

Parents’ storiesParents’ 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 Josh’s 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 Josh’s 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 ism|eye Issue 8 2012

Could your child be having seizures?Caren Haines’s 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 doctor’s

impassive face I could barely see him through my tears, which began to fall steadily onto my shirt”

www.autismeye.com 11Aut ism|eye Issue 8 2012

what might be underlying my son’s 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 brain’s 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 brain’s temporal or frontal lobe that they can elude detection.

The neurologist felt that Josh’s significant language regression and numerous staring spells warranted

A seizure is an abnormal

electrical discharge deep inside the brain”

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with a government health warning - you may laugh until you hurt!’with a government health warning - you may laugh until you hurt!’

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www.autismeye.com 13Aut ism|eye Issue 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 Josh’s 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 doctor’s 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 Josh’s 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 child’s 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-upIt 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 child’s 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 JordanIf 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 15Aut ism|eye Issue 8 2012

Parents’ stories

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