Your child’s doctor has said the word “autism.” Now what?
Receiving a child’s diagnosis of autism spectrum disorder (ASD) can be overwhelming and confusing. It often leads to more questions and concerns. What does the diagnosis mean? What does the future hold? What do we do next? How do we help our child achieve her full potential? What problems do we need to watch for?
Medically speaking, children with ASD have the same medical and health prevention needs as children without disabilities. They need regular well checks, vaccines and screening tests for things like anemia, blood pressure and high cholesterol.
Find a pediatrician with whom you and your child are as comfortable as possible. Children with ASD may need more time to warm up to medical staff. A child with ASD may need a few extra minutes before being touched or examined, so patience and a calm approach are important.
When it comes time for more invasive procedures, such as a throat swab, blood test or shot, it helps if the medical team knows if your child is more likely to be upset by a test or typically does not feel the pain of injections.
Depending on the severity of the ASD, your child may not be able to easily tell you that, for example, his throat is sore. Watch for nonverbal cues such as wincing when swallowing and alert your doctor when you think something is wrong.
Vaccines are just as important as with any other child. Be sure your child is up to date and is getting regular well child checks.
In addition to the regular health and wellness screens, your child may need to be monitored for other issues or health problems that can go hand in hand with ASD.
Epilepsy is more common in children diagnosed with autism; as many as 39 percent of these children could have a seizure disorder. The highest risk is in children with severe global developmental delays or gross motor delays. Your doctor may recommend an EEG to evaluate your child if seizures are suspected.
Other medical diagnoses to watch include: fragile X syndrome, tuberous sclerosis and ADHD. Your doctor is monitoring your child for signs and symptoms, but you should always bring up any specific concerns during visits.
Children with ASD may be more likely to eat non-food items or persist in putting their hands in their mouths and may need screening for elevated blood lead levels.
Gastrointestinal issues are common. They range from simple issues like constipation or reflux to more complex problems such as GERD and encopresis. Let your doctor know if your baby is fussy after feedings, arching her back and crying after eating or passing hard stools. Likewise, mention if your older child complains of stomach pain or refuses to pass stools because of pain or fear.
Sleep disturbances are common. Maintain good sleep routines and sleep hygiene. Most children thrive with routines, but this is especially important for children with disabilities. Regular bed times with predictable routines can reassure a child struggling with daily frustrations and challenges. All electronic devices should be turned off 30 minutes prior to bedtime. The bright screens and active images can stimulate the brain and interfere with sleep.
Sensory issues can lead to behavioral concerns such as potty training challenges, feeding problems, self injurious behaviors and attention related problems. Children with autism can be extremely selective about what they eat—often due to texture and temperature—and this can lead to nutritional deficiencies.
You and your pediatrician will need to discuss these challenges as they arise. Your doctor may refer you to a specialist, such as a speech therapist who specializes in feeding or a mental health provider who can help with behaviors.
Your doctor can also refer you to dentists and ophthalmologists who are comfortable working with special needs children. Speech, occupational and physical therapists can be a vital part of the team.
“Once a parent is faced with an autism diagnosis, so many questions run through their head – one of them being, ‘What do we do now,’” says Dr. Domonique Randall, BCBA-D, founder and CEO of The Shape of Behavior. “While there is currently no single known cause or cure for autism, there is a way to improve the everyday struggles, but time is of the essence. Choosing the best treatment, such as applied behavior analysis (ABA), and getting started early is critical.”
There is a lot of information out there and many opinions about how to help your child. It’s best to start with a face-to-face conversation with your child’s primary care doctor or the doctor who provided the diagnosis, for example, his neurologist or developmental pediatrician. That provider can point you in the right direction and help you coordinate your child’s health care and team of specialists.
It can also be very useful to connect with advocacy organizations such as Autism Speaks, Autism NOW or the Autism Society of Central Texas, as well as local organizations and parents within the community.
Dr. Theresa Willis is a board certified pediatric physician practicing in Austin.