Many parents ask me, “Will my child outgrow autism?” and I always tell them that what we hope for is that with services and growth, the child will improve so much that after as little as a few years, they no longer meet the criteria for Autism Spectrum Disorder (ASD). Outgrowing the label may mean they have learned to compensate or overcome some challenges like socialization or repetitive movements. They may have little features left of ASD, and what symptoms they do have, may cease to interfere with their development or daily lives. When they have progressed to the point where they have outgrown the label, any remaining traits may be so small that only a parent would notice, but a new person who has just met the child wouldn’t pick up on anything.
However, I advise my patients’ parents that if and when their child outgrows the label of autism, they may still have other co-occurring issues like anxiety, attention deficit hyperactivity disorder (ADHD) or learning disabilities that require ongoing care.
So yes, indeed this study should give parents hope surrounding a child’s ability to outgrow the autism label, despite their other potential ongoing issues.
In some instances, schools may suggest a decrease in services because a child has improved and outgrown the label of autism. That same child may still be struggling with organization or learning certain subjects. Parents may be in a position to say that just because their child has outgrown the autism label doesn’t mean they do not have a need for additional support.
What does life look like for a child previously diagnosed with autism who is no longer on the spectrum?
Learning disabilities, obsessive compulsive disorder, and attention deficit disorder are common among children with ASD. Rates of other disorders are common among children with autism, including: gastrointestinal disorders, ear infections, seizures and anxiety. They may clear up later in life or become better managed, but they don’t necessarily go away at the same time as their autism label.
Residual symptoms of these co-occurring diagnoses may last into adulthood. For example, a child may outgrow their ASD label but still have anxiety that can be managed by cognitive behavioral therapy.
Why is early detection and early intervention of autism so important?
Early detection and intervention help many kids outgrow the autism label in the future due to improvements with socialization and repetitive behavior. It’s important for people to remember that just because they have lost the autism label, doesn’t mean they don’t have other diagnoses or disorders that may require ongoing treatment.
There’s no question that early intervention makes a big difference in helping kids with the potential to outgrow their ASD diagnoses achieve that milestone even sooner. The trajectory has changed for many of those kids.
CHOC Children’s and the William and Nancy Thompson Family Foundation (Thompson Family Foundation) recently unveiled a new collaboration that expands our region’s capacity to serve children with autism spectrum disorders ...
By Kelly McKinnon-Bermingham, director of behavior intervention and Anna Laakman, director of education and training, at The Center for Autism and Neurodevelopmental Disorders
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By Dr. Julie Youssef, developmental-behavioral pediatrician and assistant clinical professor at The Center for Autism and Neurodevelopmental Disorders
Every child with an autism spectrum disorder (ASD) has unique strengths and weaknesses ...
Johanna and her husband Graham were expecting a healthy baby. Already parents to one little girl, they were looking forward to expanding their family.
At Johanna’s 33-week anatomy scan, she and Graham were thrilled to learn they were expecting a girl, but shocked to learn she might have club foot, a birth defect where the foot is twisted out of shape or position. They learned there was a chance it could be due to a neurological defect since everything else was showing up as normal.
“We started mentally preparing ourselves for our baby to have a club foot,” Johanna said. “We had another anatomy scan, but they couldn’t say for certain what was going on.”
On January 26, 2018 Johanna delivered a baby girl named Angelina via c-section. A neonatologist was in the delivery room in case Angelina needed immediate medical attention after birth. She was having trouble swallowing and was monitored in that hospital’s neonatal intensive care unit (NICU).
Three days later, a CHOC neonatologist rounding at the delivery hospital recognized that Angelina needed a higher level of care and a bigger team of specialists. He suggested that she might need an MRI to give doctors a better look at her brain, and determine if her condition was neurological.
“Even though I’d never been to there, I knew that when it was an option to go to CHOC, you go to CHOC,” Johanna said.
Their older daughter Genevieve had been born at St. Joseph Hospital in Orange, next door to CHOC Children’s Hospital.
“I was so freaked out before I had my first child, because of all the things that can go wrong during childbirth. I delivered Genevieve at St. Joseph because I liked knowing that CHOC as right next door if we needed them” Johanna said. “When they gave us the option to send Angelina to CHOC, there was no question—we just immediately went.”
Angelina was admitted to CHOC’s NICU and evaluated by neonatologist Dr. John Tran, of CHOC’s neurocritical NICU. Special rooms of CHOC’s NICU are designated for the neurocritical NICU, where neonatologists and neurologists have the expertise and equipment to carefully treat babies with neurological issues.
An MRI showed that Angelina had polymicrogyria, a condition characterized by abnormal brain development. Johanna and Graham had never heard of this condition and had a hard time processing the diagnosis. Then they met with Dr. Donald Phillips, a pediatric neurologist at CHOC.
He explained to the family that typically, the surface of the brain has many ridges and folds, called gyri. In babies born with polymicrogyria, their brain surface has too many folds that are too small to process information received, which leads to problems with body functioning, similar to the effect a stroke can have on the brain.
Dr. Tran explained the spectrum of care for polymicrogyria. Some patients are nonverbal, some go to school, and some even live with this condition and never know. It was too soon to tell where on that spectrum Angelina would fall.
“Caring for babies with neurological conditions can be difficult. Not only are you medically treating a newborn baby, but you are also counseling a family and giving them an uncertain prognosis,” says Dr. Tran. “In the neurocritical NICU, our first goal it to treat the baby’s underlying condition. The second goal is to educate the most important members of our care team― the parents. We know that the NICU is not a part of the birth plan, but our job is to help alleviate some of the anxiety that comes with uncertainty. We strive to optimize the potential of our patients, whatever it might be, as they go home.”
The diagnosis was a lot for her parents to take in.
“We knew we were getting the best care for our daughter, but it was such heavy news,” Johanna said. “Even with a typical kid, we don’t really know what their life will be like. Every life is a gift. Once I started going towards that mentality, I realized that nothing is certain, even with typical kids.”
At her delivery hospital, one of the red flags that Angelina needed a higher level of care was that she kept crashing when she was breastfeeding.
“It made me freaked out to feed my daughter,” Johanna said.
Soon after coming to CHOC, Angelina began swallowing therapy. When someone experiences swallowing difficulty, they are at risk for food or liquid entering their lungs, called aspiration, which may lead to pneumonia. Karin Mitchell, a speech and language pathologist who specializes in the NICU setting, worked with Angelina on swallowing safety. Karin guided baby Angelina through exercises for her mouth and tongue to learn how to properly swallow saliva. Then, they could work on breastfeeding support and syringe feeding.
Angelina couldn’t move her legs when she was born, and her parents weren’t sure if she ever would. Thanks to physical therapy, today she can bend her legs more than 90 degrees.
Throughout their stay in the NICU, Johanna and Graham were thankful to have the ability to sleep overnight in their daughter’s private room. Because Angelina was born during flu season, her 3-year-old sister couldn’t visit the NICU. Her parents would stay at CHOC all day, go home to do their older daughter’s bedtime routine, and then one parent return to CHOC to sleep alongside their new baby.
“We had the privacy we needed, and I felt comfortable doing kangaroo (skin to skin) care,” Johanna said. “I hadn’t planned on my baby staying in the hospital, and at least having our own room, and even something as small as being able to watch TV gave me a small sense of normalcy.”
Johanna and Graham also appreciated the sense of normalcy provided by a Super Bowl party thrown for parents on the unit. An infant CPR class offered on the unit helped them feel more prepared to eventually take their baby girl home.
For big sister Genevieve, CHOC offers an innovative webcam system so family members can be together and bond with their newborns when they can’t be at the bedside. The system allows families to see real-time, live video of their infant remotely, from anywhere they can securely log onto the internet.
“CHOC had a lot of things in place, like the secure camera in Angelina’s room, to make things easier on us as a family,” Johanna said.
A month after she was born, Angelina got to go home for the first time.
“We were so ready to take her home, and finally be together as a family,” Johanna said. “But it was still a little nerve-wracking. We bought four different types of baby monitors; we were used to seeing her surrounded by machines.”
A few weeks later, Angelina began swallowing therapy twice per week and physical therapy three times per week. Now 15 months old, the amount of progress she has made has made her parents proud.
She couldn’t move her legs at birth, but a year later she is rolling and reaching. Her parents credit her CHOC physical therapist Lauren Bojorquez.
“Lauren didn’t just think of what Angelina was doing now; she was always thinking ahead about what would benefit her in the future,” Johanna said.
For example, Lauren and Angelina worked on rolling because it would eventually help her learn to sit. When babies roll, it helps develops muscles that will later help them sit.
Meanwhile, Angelina was working with CHOC speech and language pathologist Annie Tsai to learn how to cough, swallow, and accept food by mouth. Swallowing therapy focused not on quantity of food consumed but on quality of how the child feeds or swallows safely. Angelina’s work with Annie focuses on movement, strength and coordination within the mouth to prepare for eventually swallowing food.
Angelina still receives most of her nourishment through a feeding tube, also called a g-tube. The tube can stay in a patient’s stomach for months or years and allows the child to receive fluids, medicines and nutrition when they can’t take in enough nutrition by mouth. Every few months, Angelina sees gastroenterologist Dr. Jeffrey Ho for follow-up appointments for nutrition, feedings and g-tube care. Dr. Ho remains in close contact with Annie, her speech and language pathologist.
“Being able to eat in a typical manner is always the goal,” says Dr. Ho. “Every baby and child are different. Right now, we are focusing on what we can do to better optimize her potential to orally feed.”
Now, Angelina can sit in a highchair, bring her hands to her mouth, accept small tastes by mouth and better clear her congestion especially when she’s sick.
“Something I hadn’t realized before Angelina was how big a part food plays in our culture. As people get older, going out to eat or meeting for coffee is a social activity. I was sad that she wouldn’t get to have those same experiences,” Johanna said. “When she started to accept tastes by mouth, it made me think of her in the future, and being able to go out with friends and at least taste something, and still participate socially.”
To further practice feeding therapy at home, Angelina has a mesh pacifier typically used to soothe teething babies. Her parents often put the same foods in her pacifier as the rest of the family is eating. So far, there hasn’t been a food she’s tried that she hasn’t liked.
Angelina’s paternal grandma was an adult speech and language pathologist by training. When Angelina started speech therapy, she updated her license and certification to help her granddaughter at home. She comes to some of her sessions at CHOC and learns from Angelina’s care team.
Also participating in therapy is big sister Genevieve, who helps hold the pacifier and can even spoon-feed her baby sister, with a little bit of help.
“I am super grateful for CHOC,” Johanna said. “That’s why our family started participating in CHOC Walk when Angelina was born.”
These days, Angelina likes playing with toys, playing with her big sister, and listening to all types of music.
“I had a lot of preconceptions about disabilities and special needs,” Johanna said. “Having a child with special needs is not what I thought it would be. It’s better than that.”
When your child complains of a headache, it can be anything from a plea to stay home from school in hopes of avoiding a test, to a sign of something more serious. But how can you tell the difference? And when is it time to see the pediatrician? Dr. Sharief Taraman, a pediatric neurologist at CHOC Children’s, offers advice on what parents can do to keep headaches at bay, the importance of identifying a pattern in your child’s headaches, options for treatment, and what types of headache warrant a trip to the emergency department.
First, it’s important to be able to identify what type of headache your child may be suffering from.
What type of headache does my child have?
Migraine symptoms in kids
At least 5 attacks that meet the following criteria:
Headache lasting 1 – 72 hours
Headache has at least two of the following features:
Pain on both sides or only one side of the head
Pain is pulsating
Moderate to severe intensity
Aggravated by routine physical activities
At least one of the following:
Nausea and/or vomiting
Sensitivity to light or noise
If your child has more than 15 headache days per month over a three-month period, and at least half of those are migraines, they may be suffering from chronic migraines.
It’s a common misconception to assume that only adults suffer from migraines, which isn’t true, says Dr. Taraman. If your child has migraines, they are not alone. About 1 out of every 20 kids, or about 8 million children in the United States, gets migraines. Before age 10, an equal number of boys and girls get migraines. But after age 12, during and after puberty, migraines affect girls three times more often than boys.
Tension headache symptoms in kids
Headache lasting from 30 minutes to seven days
Headache has at least two of the following characteristics:
Pain in two locations
Pressing or tightening feeling (not a pulsing pain)
Mild to moderate intensity
Not aggravated by routine physical activity such as walking or climbing stairs
No nausea or vomiting – many children experience a loss of appetite
Either sensitivity to light or sensitivity to sound
Acute post traumatic headache: lasts less than three months and caused by a traumatic injury to the head
Persistent post traumatic headache: lasts more than three months and caused by a traumatic injury to the head
Both acute and persistent headaches develop within one week of: the injury to the head, regaining of consciousness following injury to the head, or discontinuing medicine that impairs the ability to sense a headache following a head injury
Extended recovery risk factors:
Prolonged loss of consciousness or amnesia
Initial symptom severity
Premorbid history of ADHD, mood disorders, and migraines
Sleep apnea headache symptoms in kids
Typically occurs in the morning
Pain is present on both sides of the head
Lasts more than four hours
Not accompanied by nausea, nor sensitivity to light or sound
Medication overuse headache symptoms in kids
Headaches on 15 or more days per month
Takes over-the-counter medication for headaches more than three times per week over a three-month period
Headache has developed or gotten worse during medication overuse
Pattern of headaches resolves or improves within two months after discontinuing the overused medication
What to do when your child has a headache
A variety of non-medical interventions can be helpful for children who are suffering from headaches. These non-medical interventions for headaches include: ice packs; warm baths; taking a nap in a cool, dark room; neck and back massage; and taking a walk.
Parents shouldn’t be tempted to immediately turn to medication such as ibuprofen or naproxen, says Taraman. Over-the-counter pain medications (such as Tylenol or Motrin) should be limited to no more than three days per week with no more than two doses per day, in order to avoid medication overuse headaches. Follow the dosing instructions on the label and ask your child’s pediatrician or pharmacist any questions before beginning a treatment regimen. Follow dosage instructions given by your physician or pharmacist, or download a guide to ibuprofen and naproxen.
How to avoid headaches
There are a number of things parents can do to prevent headaches, says Dr. Taraman. These include:
How much did your head hurt, on a 0-10 pain scale?
Where did your head hurt?
What did you feel just before and during the headache?
What did you do to make yourself feel better?
Did you feel better, on a 0-10 pain scale?
Headache end date and time
Your child’s pediatrician may adjust your child’s diet, headache hygiene routine, or their NSAID regime. In some cases, your primary care provider may refer you to a pediatric neurologist, who have specialized training in the nervous system (brain, spinal cord, muscles and nerves), who work in tandem with imaging and other specialists and pediatricians as necessary.
Patients should immediately be taken to the emergency department for some headaches including:
Thunderclap headache: severe, sudden onset of pain that occurs anywhere in the head, and grabs your attention like a clap of thunder. Pain usually peaks within 60 seconds to a few minutes.
Any headache that comes with weakness or numbness on one side of the body, or changes in consciousness or awareness.
Blurred, double or loss of vision that persists after the headache resolves.
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Kids Health, delivered monthly, offers “healthful” information for parents:
By Dr. Nancy Shan, pediatric resident at CHOC Children’s
Headache complaints can be bewildering and frightening to many parents. Most are caused by a benign (simple) problem or primary headache disorder. ...
Think only grown-ups get migraines? Think again. This painful neurological condition is also common among children.
In fact, one in 20 children – or about 8 million children nationwide – experience ...
Thick blankets covered the tables in Joe and Nicole Lucak’s New Mexico home to protect their young son who was living with epilepsy. The couple placed a soft cloth over every surface to protect their son Gabriel when he’d suffer a seizure and fall.
On bad days, Gabriel would experience up to 50 seizures. On a good day, it might be just 10. On any day though, this reality was devastating for his parents.
“It was like living out a surreal nightmare,” Nicole says.
Gabriel had been a healthy, normally developing child until age 3, when he experienced his first tonic-clonic seizure, the type of seizure typically depicted in movies when a person first loses consciousness, then falls to the ground and begins jerking and shaking.
Searching for answers
Gabriel was initially diagnosed at his local hospital with myoclonic-astatic epilepsy, also known as Doose syndrome. His seizures were difficult to control, and doctors attempted many different treatments, including eight months on a special ketogenic diet. During this time, Gabriel was hospitalized numerous times to modify his medication and control his seizures.
A low point for the Lucak family came about nine months after the seizures began. While hospitalized for respiratory syncytial virus, Gabriel’s seizures increased significantly. An electroencephalogram (EEG) recorded seizures occurring about once a minute and a slowing brain wave frequency. Magnetic resonance imaging (MRI) revealed decreased brain volume. Gabriel’s health was rapidly deteriorating.
Joe and Nicole desperately began looking elsewhere for help, and found a beacon of hope nearly 1,400 miles away in Dr. Mary Zupanc, a CHOC Children’s pediatric neurologist and one of the nation’s leading epileptologists, who was practicing in Wisconsin at the time.
Under Dr. Zupanc’s care, Gabriel began a new treatment program. He stopped following the ketogenic diet and began taking a new antiepileptic medication. He underwent a two-week long-term video EEG monitoring study, which revealed he was experiencing a fifth type of seizure during sleep.
A new diagnosis
Dr. Zupanc then knew that Gabriel’s epilepsy had evolved into a more severe form called Lennox-Gastaut syndrome (LGS). This rare type of epilepsy is marked by seizures that are difficult to control, and typically persist through adulthood.
She also diagnosed Gabriel with cerebral folate deficiency, a rare metabolic condition, following a spinal tap and extensive testing on his cerebral spinal fluid. He immediately began taking a folinic acid supplement and following a strict dairy-free diet.
Under this new treatment plan, Gabriel was seizure-free within two months. A second spinal tap showed a normal level of folate, and another MRI had normal results. The Lucaks were thrilled.
“Gabriel could have suffered severe brain damage, or he might not have survived at all,” Nicole says. “That’s how critical it was for us to have found Dr. Zupanc when we did.”
A bright future
Today, Gabriel is an intelligent, creative and artistic 13-year-old who dreams of being a paramedic when he grows up.
After regularly traveling from San Diego, where the family now lives, to the CHOC Children’s Neuroscience Institute and its level 4 epilepsy center for appointments and follow-ups, Gabriel has had several normal EEG studies and has successfully weaned off his anti-epileptic medication with no seizures.
Because of this, Dr. Zupanc believes Gabriel’s epilepsy is in remission. Now, he no longer needs to always carry emergency medication – a development that is life-changing for Gabriel and his family.
“All restrictions and seizure precautions have been lifted,” Nicole says. “So, Gabe looks forward to driver’s education in the near future. He will no longer need to have long-term video EEG monitoring performed each year. No more medical ID necklace. No more Diastat in my purse. No more Diastat kit in the school’s health room.”
Gabriel is also under the care of Dr. Jose Abdenur, chief of CHOC’s metabolics disorders division. Gabriel, his younger brother and his parents have all participated in several research studies involving genetic testing for both epilepsy and cerebral folate deficiency. Results of the epilepsy study found no predisposition to epilepsy.
Seizures are mysterious. They cause the body to act strangely. They’re hard to predict and they can’t be seen, except with special tests of the brain. So, what causes seizures?
As a neurologist with special training in epilepsy, CHOC Children’s epileptologist Dr. Maija-Riikka Steenari has dedicated her career to understanding seizures and epilepsy, which affects 470,000 children nationwide. In recognition of National Epilepsy Awareness Month, she provides a look into the mystery of seizures.
What happens in the brain during a seizure?
“Brain cells, called neurons, communicate by electrical activity. If there is a dysfunction, the brain can get overexcited. The electrical activity in the brain surges, causing the neurons to get out of control. The surge of electricity can start in one spot and spread, called a focal onset seizure, or it can happen throughout the brain, called a generalized seizure.”
What does a seizure look like?
“A seizure can manifest in many different ways. When a family comes to us, we ask them what they saw when their child had a seizure. What happened first? Was one arm stiff, were both arms jerking, did the child fall down, did their head turn to one side, were they unresponsive? It’s very helpful if the family has video of a seizure happening. A seizure can make you see, feel and taste weird things. We will ask the child, do you remember having a seizure or not? All these details help us determine if the seizure started from one focus and from which area of the brain, or if it was generalized onset.”
What causes seizures?
“Focal onset seizures can be caused by multiple different things, for example a malformation in the brain or an injury to the brain. Other causes could be a genetic or metabolic disorder which affects how the brain works, or causes a buildup of toxic materials, or is preventing the brain from getting what it needs. Many seizures or epilepsies are considered idiopathic, which means they have no known cause. We are learning more about them and why they happen, and as we do more testing, we find explanations to previous mysteries, often caused by genetic mutations.”
What can tests tell you about seizures?
“We always start with an EEG. That looks at the electrical activity in the brain. We can often see epileptiform discharges on the EEG, which tells us a patient has a tendency of having seizures. I often describe these discharges as sparks of electrical activity. I like to use the lawn analogy when I am talking to families. Think of a brain that has a tendency of having seizures as dry grass. Epileptiform discharges, or sparks, can easily cause a fire (I.e. seizure) on the dry grass. We may also use an MRI to look at the structure of the brain, to look for any abnormalities like a cortical malformation, tumor, or scar tissue from an infection or brain injury such as a stroke.”
How do you treat seizures?
“If the seizure was unprovoked, and after the initial evaluation we have a high suspicion that seizure will reoccur, we recommend starting a medication to treat the seizures. Referring back to the lawn analogy, medication can be considered as watering the lawn, to make the environment more difficult for the sparks to cause more fires. About 60-70 percent of the time, the first medication works when picked correctly. If the seizures continue despite appropriate dosing, we often try a second one. With adding a second medication, the chance of being seizure free is much less likely and If they fail two medications, we need to consider other treatment options, for example epilepsy surgery, diet treatments or vagal nerve stimulator.”
When considering epilepsy surgery, how do you know what part of the brain to operate on?
“Prior to surgery, we gather a lot of information about the seizures, the cause of the child’s epilepsy and the brain structure. We capture typical seizures during an inpatient video EEG study, and we will often lower medication to encourage a seizure to happen. We use detailed imaging techniques to look at the brain structure and how the brain uses energy, to see if we can pinpoint a focal seizure onset zone. We will also do neuropsychological testing, to understand if a child has difficulties in certain brain functions. We will discuss the results with our multidisciplinary epilepsy team, and evaluate if the child could benefit from epilepsy surgery.”
Is everyone’s brain mapped the same?
“No. Most brains are generally mapped the same but it’s not always the case, and sometimes the cause of the seizure has also caused the brain to map differently. A child’s brain is very plastic, and it has adapted around the injury or abnormality. Seizures cause disruption of typical brain development and the more seizures you have and the longer you have them, at some point your brain has learned to have seizures and they are much harder to control. Disruption of normal brain networks can also cause learning difficulties and developmental delays. That’s why it’s important to treat epilepsy as early as possible in children.”