A Parent’s Guide to Understanding Autism: April is Autism Acceptance Month

Andrew Martinez, PhD, Clinical Director, Autism Program, Psychology Department

What is Autism Spectrum Disorder (ASD)? ASD is a lifelong neurodevelopmental disorder where individuals have social and behavior difficulties. The first (and main) symptom is trouble with social skills. Social skills do not come as natural to individuals with ASD as they do for those without ASD. Social difficulties are different in everyone, but these are some common symptoms:

• Poor/avoidant eye contact
• Limited or unusual gestures
• Trouble using nonverbal language (e.g., eye contact, gestures) to communicate
• Trouble reading emotions, feelings, and/or facial expressions
• Trouble making and keeping friends
• Not understanding social relationships (e.g., marriage, friendships, etc.)
• Not interested in socializing with others
• Trouble having a shared conversation

Also, individuals with ASD frequently have restricted and repetitive behaviors. These behaviors are different for everyone, but these are some common symptoms:

• Hand flapping
• Full body rocking
• Other unusual repetitive motor movements
• Repeating someone else’s speech (called echolalia)
• Repeating scripts or specific statements they have heard (called delayed echolalia)
• Trouble adjusting to changes with routine
• Having specific routines or habits that must always be done a certain way
• Lining up or organizing things
• Obsessed with specific topics or interests where they know “everything” about it
• Interested in unusual topics or interests compared to others their age
• Sensory sensitivities – loud noises, clothing, food textures, specific textures, grooming, etc.

It is important to note that just because someone has social problems and repetitive behavior, they do not necessarily have an ASD. Many other disorders have similar or overlapping behaviors (e.g., ADHD, intellectual disability, anxiety, mood disorder, schizophrenia spectrum disorders, etc.).

What are some early behaviors/risk factors I should look out for? Risk factors vary depending on age, but here are some risk factors for infants and toddlers:

• Does not smile back at you when you smile at them (called social smiling)
• Does not respond to their name
• Has trouble making requests
• Avoidant or poor eye contact
• Seems to be “in their own world” most of the time
• Is not interested in interacting with you or in social games (e.g., peek a boo)
• Does not share their interests with you
• Unusual motor, verbal, or sensory behavior
• Unusual or repetitive play

In addition, two other risk factors are having a sibling or another immediate family member with ASD and having a specific medical condition associated with ASD.

Dr. Andrew Martinez, the author of this blog, evaluates a child for autism. Dr. Martinez recommends parents first check with their child’s pediatrician before considering a visit to the Autism Clinic.

If my child is showing symptoms of ASD, what should I do? The first thing you should do is talk to your pediatrician. It is very important to be open with them and share your concerns. They are very good at knowing what is typical development versus delays or concerns. They may have you fill out some questionnaires to help them see if there are enough symptoms to warrant further workup. If they notice concerns or are unsure, they will refer you to a specialist. Referrals will more than likely be sent to one of the following specialists: psychologist, neuropsychologist, developmental pediatrician, neurologist, or neurodevelopmental pediatrician. At The Children’s Hospital of San Antonio (CHofSA), these referrals will be sent to either Dr. Andrew Martinez, Dr. Melissa Svoboda, or Dr. Veronica Villarreal.

Dr. Melissa Svoboda is the section chief of neurology at The Children’s Hospital of San Antonio. Dr. Svoboda has extensive experience and knowledge in the evaluation and diagnosis of autism in children.

In addition, your pediatrician might also refer for therapies while you wait for a specialists’ appointment (if it is needed). These therapies often include speech therapy (ST), occupational therapy (OT), or physical therapy (PT). They may also refer to Early Childhood Intervention (ECI) if they are under 3 years old. If your child is older than 3 years old, they may encourage you to request an evaluation through your local school district.

What does an ASD evaluation look like? Evaluations vary depending on who is completing it, but most ASD evaluations include a detailed parent interview and standardized testing. Interviews are used to gather details about the current ASD-like symptoms, when they started, and how frequent or severe they are. The interview is also used to gather information about the family, the gestational history, the child’s development, any other medical or psychiatric problems, and what services or therapies they have received. Standardized testing is used to see how well a child functions compared to other children their age. Testing often includes intelligence (i.e., IQ), language, motor, sensory, and autism specific tests. It is very important to note that tests are used to gather data. There is not one specific test used or that can diagnose ASD alone.

Nurse Practitioner Katherine Holt conducts an interview with a parent whose child is undergoing an autism evaluation.

At CHofSA, an autism evaluation begins with a clinician interviewing a caregiver and then observing and interacting with the child. The next steps will be determined by results from the initial appointment. For some children where the doctor can tell during that appointment they have an ASD, they will be diagnosed with ASD and referred for treatment. If the doctor is not sure, they will be recommended for further testing. Testing might be with only the same doctor or might be with our multidisciplinary autism team. If the doctor is sure the child does not have an ASD, they will speak with you about treatment (if it is warranted). Regardless of the diagnosis, we will make sure to discuss your child’s strengths and weaknesses and come up with a plan to help them.

What happens after an ASD diagnosis is made? This varies depending on where and who is evaluating your child. At CHofSA, we will discuss the results and treatment plan with you. Treatment options will depend on the child’s specific difficulties, but Applied Behavior Analysis (ABA) therapy is often recommended. ABA is a therapy that focuses on increasing positive or helpful behaviors and decreasing negative or unhelpful behaviors. ABA therapy can be used to work on social skills, language, inappropriate and harmful behaviors, and many other skills. In addition, ST and OT are often recommended, as many children with ASD have trouble with speech, language, motor, sensory, and adaptive skills.

In addition, we will also discuss what medical work up is needed to find the cause of ASD (also called etiology). This often includes a genetic evaluation and possibly a neurological work up. Also, there are currently no medications or other medical treatments approved for ASD. There is no cure for ASD. Some children with ASD take medication or have other medical treatments, but these are due to other factors and NOT ASD alone. There are several alternative therapies that are available; however, there is very little or no data to prove these work or help. Most of these therapies are expensive (cash pay only as insurance will not cover them) or can be dangerous for children. For this reason, we strongly recommend you speak with your pediatrician or autism specialist about any alternative treatments you are considering. Just like you, we want to keep your child safe.

Lastly, ASD is a lifelong disorder. Individuals with ASD symptoms will fluctuate over the years. Thus, it is important to connect you with community resources and develop a strong support system. At The Children’s Hospital of San Antonio, we will connect you with local and statewide resources. We will follow up with you as needed, and we will always be here to answer any questions or concerns that may come up.

If you are concerned about your child’s development, talk to your pediatrician first. If you need a primary care physician for your child, visit our website to find a pediatrician near you.

COVID-19 and School Re-Entry for Special Needs Children

Ruchi Kaushik, MD, MPH, Medical Director, Complex Care Clinic, The Children’s Hospital of San Antonio, Baylor College of Medicine

What you need to know about special considerations for Children and Youth with Special Health Care Needs (CYSHCN)

Distance learning for children with special needs this past spring was challenging for everyone — students, parents/caregivers, and educators. As a result, if you are a parent/caregiver of a child receiving special education services or other accommodations, you are likely anxious about the start of the school year. Should your child attend virtually or in person? How will you be sure your child will wear a mask or physically distance themselves? Will they receive the rigorous instruction and services they need virtually? What are some methods to reduce the risk of contracting the COVID-19 virus? Here are a few ideas to address these questions, but keep in mind each child will need an individualized plan for the 2020-2021 academic year.

In June, the American Academy of Pediatrics (AAP) published guidelines for school re-entry, advocating for students to be physically present in schools. That said, the AAP also recommended that:

• School policies should be flexible, responding quickly to new information
• Strategies should have the ability to be revised and adapted depending upon virus activity in the community
• The developmental stage of students should be considered to devise practical, feasible, and appropriate policies

Pediatricians recognize that ideally children are best taught in person, but each community and each family need to weigh the benefits and risks of in-person learning. Additionally, it is important to remember that every child is entitled to a free appropriate public education in the least restrictive environment.

On August 7, 2020, the Bexar County Health Authority issued an Amended Health Directive, marking the school risk level as “high” (red zone) on the health indicator bar. In the red zone, it is recommended that ancillary services that do not require prolonged close contact be provided one-on-one to special needs students. See the Amended Health Directive and any timely updates here.

General Precautions

The Centers for Disease Control and Prevention (CDC) recommend wearing masks and physically distancing (six feet apart) to prevent transmission of the virus. You, as a parent/caregiver, need to assess whether this is possible for your child.

• Have you tried placing a mask on your child for gradually increased periods of time at home? Can your child tolerate wearing a mask for up to eight hours?
• Will your school allow a plexiglass barrier to replace a mask?
• Is your child cuddly and unlikely to understand why they cannot cuddle at this time?
• Does your child have equipment (particularly respiratory equipment such as a tracheostomy) that will require frequent manipulation by the school nurse?
• If you plan to send your child to in-person school, will they ride the bus?
• Will someone need to feed your child due to aspiration risk?
• Will the school allow your child’s private duty nurse to accompany them?
• What is your school’s plan for cleaning and disinfecting the classrooms, hallways, bathrooms, playgrounds, and school nurse’s clinic?

The answers to these questions will help you come to a decision about virtual versus in-person learning. Be sure to discuss your concerns and thoughts with your pediatrician so you can make an informed, shared decision that is best for your child and your family. Consider connecting your pediatrician with your school nurse for seamless coordination and communication.

And, finally, working with your health care professionals (doctors, nurses, therapists, social workers), compile a list of resources and support your child will need for both virtual and in-person learning and discuss them at your Admission, Review, Dismissal (ARD) meeting to inform the development of your child’s Individualized Education Program (IEP). (Examples include a paraprofessional to ensure physical distancing from other students, use of a plexiglass barrier in place of wearing a mask when possible, etc.) Remember that your school and district cannot advocate for what your child needs if it isn’t in your IEP.

For more information, visit www.healthychildren.org.

If you found this blog helpful, consider hitting the subscribe button on top so you are among the first to receive new blogs when they are posted. And keep up with what’s happening at The Children’s Hospital of San Antonio by visiting our website.

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Newborns Can Experience PTSD Following Hospitalization

Ruchi Kaushik, MD, MPH, Medical Director, ComP-CaN (Comprehensive Peds for Complex Needs); Medical Director, The Children’s Hospital of San Antonio Blog; Assistant Professor, Pediatrics, Baylor College of Medicine

June 27 is Post-traumatic Stress Disorder Awareness Day; PTSD is a mental health diagnosis that you have likely heard, particularly among the men and women who have served in the armed services. But did you know that premature babies can have a form of post-traumatic stress after staying in the neonatal intensive care unit (NICU)?  The trauma, or “early adverse experiences,” from a NICU stay can affect your premature baby’s health, development, and behavior.

Why is a NICU stay traumatic? NICU stays can be traumatic for a variety of reasons:

Stimulation  Babies do not tolerate being overstimulated. Flashing lights, beeping monitors, constant alarms sounds in the NICU can cause a premature baby to suddenly pause in breathing and also result in frequent increases and decreases in heart rate, blood pressure, and oxygen levels.

Procedures  The procedures performed in the NICU are life-saving, but they do have consequences.  In addition to having a tube placed in the airway to help a baby breathe, there are many procedures that cause pain such as placing an IV or undergoing surgery.  These “skin-breaking” procedures can affect a baby’s normal development.

Separation from Mom  Although necessary, separating a premature baby from mom interferes with bonding and can affect the baby’s normal stress responses.  This means that a premature baby’s response to stress may be excessive (prolonged crying, more severe separation anxiety, etc.) compared to that of a baby who was not premature and in the NICU.

What can I do to lessen the effects of this trauma?

The best studied technique to improve the impact of trauma on a premature baby in the NICU is skin-to-skin (or kangaroo) care.  To perform skin-to-skin care, the baby is wearing only a diaper and is held upright on her belly against mom’s chest.  Indeed, in animals, being sensitively touched soon after having been born results in less production of the body’s stress hormones (steroids).

Other methods to decrease stimulation include covering incubators with blankets to reduce light exposure, removing noisy equipment from the area if not necessary, and using sound-absorbing panels if they are available.

Although the  NICU experience is necessary to help save a premature baby’s life, as a parent, you can do their part to lessen the effects of this trauma by being aware that this is a problem, providing skin-to-skin care as often as possible, and always responding quickly to your baby’s needs so your baby feels safe and secure with you once you go home.

5 steps to getting you and your medically fragile child home from the hospital

Complex Corner: This is the first in a series of blogs specifically written for parents of children who have complex conditions that require a variety of medical specialists.

By Ruchi Kaushik, MD, MPH
Assistant Professor, Pediatrics
Director, ComP-CaN (Comprehensive Peds for Complex Needs)
Baylor College of Medicine

Taking a newborn home from the hospital can be anxiety-provoking for most families, so taking a medically fragile infant or child home after being in the hospital for several weeks is obviously daunting.

Families meet a variety of doctors, nurses, physical/occupational/speech therapists, respiratory staff, case managers, and social workers – it is impossible to remember everyone’s names, much less what they just advised you to do before leaving the room.  That said, I often tell caregivers that hospital staff have done a superb job of saving a child’s life; our next task, as a team, is to prepare a child for school.  In simple terms, going home is one transition to a new normal, until the next transition.