“Lee Health: A Team Approach to Autism Spectrum Disorder”
On Monday, April 5, Dr. Jason Sabo, pediatric developmental and behavioral specialist, Dr. Guillermo Phillips, pediatric neurology specialist, Dr. Margie Morales, pediatric development and behavioral specialist, and Jillian DaGraca, autism navigator, discussed Autism Spectrum Disorder and what Lee Health is doing to take care of these patients.
Dr. Sabo: What is Autism Spectrum Disorder (ASD)?
It’s a complex disorder that affects many areas of functioning, as a result, the treatment requires a multi-disciplinary team approach. Each discipline is just a piece of the puzzle. When we work together, we are going to have better outcomes. At Lee Health, we have developmental pediatric, neurology, psychiatry, psychology, autism navigator and also social work. We also have speech/language, occupational and physical therapy.
Dr. Morales: Early Identification and Evaluation of Young Children with ASD
What is Autism Spectrum Disorder? A group of complex, lifelong, neurodevelopmental disorders that begin early in childhood and present with a wide range of symptoms, skills and ability levels. The cause is unknown. Scientists believe genes, biology, and environmental factors play a role.
Symptoms of ASD: Deficits in social interaction and communication + restrictive interests and repetitive behaviors. Both of these symptom domains must be present to make a diagnosis of ASD. Symptoms present in early development and cause significant impairment in daily functioning. The symptoms can not be explained by Global Development Delay or intellectual disability.
How common is ASD?
The prevalence of ASD has increased significantly. It occurs in 1-2% of children in the United States. It occurs in all racial, ethnic and socioeconomic groups. ASD is 4 to 5 times more common in boys. More recent studies have shown it is often associated with other conditions such genetic, neurologic or psychiatric disorders.
These children require early intervention and need significant support from medical, educational and social systems.
Why is early identification of ASD important?
Early identification leads to early intervention, behavioral support and improve the developmental outcomes of these children. Early identification helps determine whether there is an underlying cause in order to implement necessary treatments. The more families understand what ASD is, the more they can advocate for their children.
Efforts to increase early identification of ASD
- Changes in diagnostic criteria from severe to mild, in order to include children with milder cases
- American Academy of Pediatrics recommends universal screening for ASD at 18 and 24 months, using specific instruments
- Increase awareness and training for professionals and parents
- Increases in availability of services
- ASD does not occur in isolation. It occurs across a spectrum of intellectual functioning, medical and psychiatric disorders. Primary healthcare providers play an important role in early identification, especially, in at risk children such as siblings of children diagnosed with ASD, genetic disorders that can be associated with ASD and premature and low birth weight infants.
Can we identify ASD in young children?
Universal screening at 18 and 24 months of age is not being done consistently by all providers. As a result, we often take a wait and see approach to these children. If parents have concerns, please express them to your primary care provider so that children can be screened and referred appropriately. Studies show that 30 to 50% of parents report a developmental problem before the first year of age. Often these concerns are ignored or not addressed. The mean age of first parental concern is 18-19 months, but we want to identify children earlier than 16 months of age. Although a diagnosis can be established reliably at the age of 2, in most cases, the mean age of diagnosis is 4-5 years. Early identification is key because it leads to early intervention services and ultimately to the best outcome.
What are the early signs of ASD?
Each child develops differently and uniquely. It’s important to know the early developmental milestones to understand the symptoms of ASD. Many parents come in and say their child is different, undemanding or he’s very irritable. Symptoms include: lack of eye contact, doesn’t follow objects visually, doesn’t smile or lacks joyful expressions, doesn’t respond to their name or a familiar voice, don’t use gestures to communicate, lack of interest or initiative to explore their environment, lack reciprocal vocalizations or babbling, don’t make noises to get your attention, prefer to be alone, don’t respond to cuddling, don’t reach out to be picked up, don’t imitate facial expressions or movements, doesnt play with others or share interest or enjoyment, don’t ask for help or make basic requests.
What are the Red Flags for ASD that indicate the need for evaluation?
**American Academy of Neurology and the Child Neurology Society specifies that these symptoms are indication for immediate evaluation. Red flags include
- No smiles or joyful expressions by 6 months
- No sharing of sounds, smiles or other facial expressions by 9 months
- No babbling, pointing, waving or gestures by 12 months**
- No single words (typically seen at 12 months) by 16 months**
- No spontaneous meaningful 2 word phrases by 24 months**
- Loss of language or social skills at any age**
Evaluation of ASD
- Team obtains a comprehensive history, including presenting symptoms, medical, birth, developmental milestone, behavioral, family and social history. Parents need to obtain prior medical, developmental and educational evaluations
- Physical examination, including growth parameters, head circumference, unusual facial characteristics, skin abnormalities and neurologic abnormalities. Observe the child’s language, social, behavior, play and interaction with others.
- Perform general developmental evaluation that measure language, problem solving, motor, social and adaptive skills.
- Perform ASD specific standardized instruments
- Determine if additional lab tests are needed for medical conditions
- Identify comorbidities such as: hearing and vision, general developmental delays, epilepsy, sleep disturbance
- Access the parent’s knowledge of ASD, support and coping skills
- Establish a clinical diagnosis, sometimes, the diagnosis can be made in the first visit, other times, a provisional diagnosis is made
- Discuss prognosis which is variable and outcome
- Provide support, information and available resources to parents
- Assess hearing of the child
- Referrals for therapies and other specialists as needed
- Every child less than 3 years of age is referred to Early Intervention, if over 3, they are referred to FDLRS to be evaluated by the Pre-K assessment team
How to Prepare for an Evaluation
- Provide prior medical/health records
- Know your child’s developmental milestones
- Provide the results of prior developmentl evaluations
- Provide prior therapy evaluations
Dr. Philipps: Co-existing Medical Problems in ASD
Causes of ASD
- Most causes unknown
- Suspected combination of genetic and environmental factors
- Known causes
- Genetic: assessed for in initial evaluation
- Brain injuries
- Brain malformations
- Other- toxin exposure (lead), rare (untreated maternal PKU, exposure to medication)
- Many are still being discovered
Co-existing Medical Problems in ASD
- Global developmental delays/intellectual disability
- Epilepsy/seizures, much more common in ASD.
- Sleep problems, trouble falling asleep, staying asleep or sleep patterns
- Behavioral/psychiatric disorders-irritability, hyperactivity, ADHD, higher rates of anxiety, mood disorders, aggressive behavior disorders, obsessive/compulsive. Some are separate from ASD, some caused by it. Children may act out because they are frustrated. Important to recognize to help reduce frustration
- Gastrointestinal and feeding problems, very common. Constipation, selective food choices, textures
- Hearing and vision problems, this can contribute to the disability and can impair social interaction
Seizures in ASD
- Increased risk of seizures, serious complication that can be treated
- By early adulthood, 10-20% of ASD children may have epilepsy. General population lifetime risk of epilepsy is 1-2%
- Seizures of all kinds may occur at any age, multiple shapes and sizes
- Higher risk of seizures-red flags for seizures
- Severe cognitive impairment
- Lack of language, language impaired
- History of regression
Neurological testing in ASD
Based on the characteristics and evaluation of each child. Most common:
- Genetic testing-most commonly indicated
- 1st line: Chromosome microarray and Fragile X; Rett testing in some girls, which can look a lot like ASD
- Neuroimaging MRI – requires sedation, not recommended for all children
- Abnormalities on neurological exam, severe delays, seizures
- EEG-seizures or possible seizures, sometimes for regression or loss of language
When to see a Neurologist
- Seizures or suspected seizures, such as staring spells or involuntary movements unexplained. Keep a log or take videos.
- Developmental regression
- Unexplained severe global developmental delays, children who may not be progressing for their age
- Abnormalities in head size, too small or too large
- Abnormalities in muscle tone, muscles feel loose
- Neurological exam abnormalities, weakness, trouble walking
- Certain birth marks (white or café au lait patches)
Jillian DaGraca: Supportive Services
What is an Autism Navigator? An Autism Navigator connects with families who are newly diagnosed with ASD. They act as a liaison between the child, family, staff and referring physician offices. The navigator empowers families by providing them with necessary community resource information and support.
- Checklist completed to determine the needs
- Physicians care plan, including early intervention services discussed, with appropriate resources provided to caregivers
Dr. Sabo: Therapeutic Aspects of Treatment
ASD is a lifetime disorder that has effects on the individual, their family and the community. Challenges in treating is that each individual with ASD is unique. It is a spectrum disorder, which means there is a wide range of presentations and severity. Mild cases can grow up to function in society. Severe cases may require lifelong care. Understanding where the child falls on the spectrum impacts treatment.
Important to understand what normal development looks like in order to anticipate the needs.
Treatment needs change as children develop. Treatment will address what children will be facing as they age. At an early age, it may be sitting still. At a later age, it might be teaching them how to drive. Can they go out in the real world. Identify where the child is, and where we want them to be. Each specialty is a piece of the puzzle.
The earlier, the better. Younger children are more able to be molded. Idea is to teach positive skills before the negative ones come in. Practice makes permanent. Teach coping skills.
Goals of treatment:
- Physical skills
- Social skills
- Emotional regulation
- Children with ASD struggle with going from one activity to another
- They face ore exposure to peers
- It’s important to create an Individualized Education Plan (IEP) with the school district. It’s a plan of what’s best for that child. Identify specific strengths and weaknesses.
- IEP requires a transitional living plan (In Florida, at age 16)
- Identify education, vocational training, employment and living arrangements
- Determined by functional abilities, what are they currently able to do and what is anticipated they will be able to do
- Each year, and estimated 70,000 students with ASD age of out of school based programs
- Identify education, vocational training, employment and living arrangements
Types of Therapy for ASD
- Behavioral Management Therapy, almost all ASD children will receive. Cognitive Behavioral Therapy, such as Applied Behavioral Analysis (ABA)
- Cognitive Behavioral Therapy is for more high-functioning kids
- Educational and school-based therapies, for academic and social functioning in school
- Medication, will not cure autism, but can help treat the symptoms
- Nutritional Therapy, addresses physical issues caused by diet that may affect behavior
- Occupational Therapy, to help live as independently as possible
- Physical Therapy, build motor skills, strength, balance
- Parent-Mediated Therapy, helps the parent take the skills and techniques and use them at home
- Social Skills Training, teaches the skills needed to interact with others
- Speech and Language Therapy, most often early childhood
- Group Therapy, helpful for higher functioning to try out skills in real time
- CDC’s “Learn the Sings. Act Early”: www.cdc.gov/ncbdd/autism/screening.html
- Provides free materials to track development, from birth to 5 years of age
- First Words Project: firstwordsproject.com
- From FSU Autism Institute
- Education on communication milestones as well as development
- Disability Rights Florida: disabilityrightsflorida.org
- Nonprofit organization that provides free legal advocacy
- Autism Distance Education Parent Training (ADEPT): health.ucdavis.edu/mindinstitute/centers/cedd/cedd_adept.html
- Self-paced online learning to help parents teach children with ASD and other neurological and developmental disorders functional skills using the principals of applied behavioral analysis
- Turning 18: turning18.org
- Free tool for parents in Florida to assist adult children with developmental disabilities to make key life decisions
- Free Autism Screenings
- Ages 18 months to 5 years old, call 239-343-6838 to schedule
- Dates: April 23, May 21, June 24, July 23, August 27, Sept. 24, Oct. 22, Nov. 19, Dec. 17, 2021
- 15901 Bass Road, Suite 102, Fort Myers
QUESTIONS FROM VIEWERS:
Q: I long suspected my 11-year-old daughter was on the autism spectrum, but she didn’t have any intellectual delays. She has been diagnosed with ADHD, and now her mental health therapist is seeing evidence of autism. What type of evaluation is recommended for children of this age?
A: Dr. Morales: We prefer to receive children much earlier. This child may represent a milder case of ASD which is manifested now as the social and academic demands increase. We evaluate these children. They receive the same evaluation we do with younger children. We do behavior rating skills, particularly looking at social responsiveness scale, used for screening and look at social interaction and repetitive behavior. The milder cases are much harder to diagnose. They are the ones that come under the radar until the academic and social demands increase.
Q: Why do you think some people swear the ASD is caused by vaccines. What changes are these people seeing in their child?
A: Dr. Phillipps: Many of the causes of autism are unknown. Signs of autism are often seen in early childhood, around the time that vaccines are given. Are they linked or not? This is an area of contention in some circles. A lot of the issue started in 1998 when a paper was published in the Lancet, a prestigious medical journal from England, by a physician named Andrew Wakefield. He proposed that children developed autism by the MMR (Measels, Mumps and Rubella) vaccine. However, years later, we found out he falsified his information; he basically lied. The publication retracted his paper, and he was stripped of his medical license. But a lot of people saw it, and it was out there. The American Academy of Pediatrics and the American Academy of Neurology have done studies and haven’t found a link between autism and vaccines. We don’t know what causes autism, but it has been proven it’s not vaccines that cause an increased risk of autism. Vaccines are effective tools to keep us all safe.
Q: Are you doing a background on parenting styles? Types of discipline parents are using?
A: Dr. Sabo: Autism children have difficulty with transitions and are very reactive to what’s going on in the environment. We do encourage parents to be consistent and calm. Consistency is so important with any child, but even more so with children who are diagnosed with ASD. Small things can set these children off, and they have a hard time managing. Some parents I see say their children have a difficult time if they go a different way home from school. It’s just an example of how difficult different transitions can be. With parents, I encourage them to have a lot of consistent routines at night. This is the same for ADHD and other disorders, but even more so for children diagnosed with autism. As the child gets older, this is something I encourage parents to branch out on. We have to train children to be successful in the community. I encourage parents to try to expose them to different environments as long as they can tolerate them. It really takes a calm parent. If you raise your voice, a child is going to be reactive to it. Loud noises can often be upsetting. Even the textures of food can be difficult. Repetition and calm are the best parenting tools.
Q: What types of resources (individual and group) are available in our community for “high functioning” high school teens with ASD?
A: Dr. Sabo: This is a difficult thing to put these types of groups together because there are so many different presentations. How do we get developmentally similar children and skill levels together? It’s really difficult to get that. The pandemic has made it even more difficult. These groups are better in person than online. There are resources in the community. We can put links to some of those. Right now it’s kind of hit or miss, but as things return to normal, hopefully there will be more of those.
Dr. Morales: Currently in our practice we are beginning to evaluate our teenagers at 14-15 years of age and begin to talk about the transition to adult services. During high school, we have our children evaluated to determine their overall intellectual ability, their competencies to make decisions regarding health, legal and financial matters. We are now trying as a team to develop a protocol to try to help our older teenagers that are ready to transition out of our care, so that transition goes as smooth as possible. One of the things I want to truly emphasize for our families with children with ASD is to know your child. You know their strengths and weaknesses. Know what they are doing in school. Know their grades. Know what the IEP is saying about your child. What are the outcomes?
Q: Does Golisano provide ABA therapy?
A: Dr. Sabo: We do, but currently only in Naples. We are talking about bringing it to Fort Myers. There are providers in the community. One of the difficulties of that is insurance and what insurance will pay for as it is a costly therapy. I encourage you to communicate with your insurance provider, because they should have a list of individuals who are doing that.
Q: What can we, as a SWFL community, do to help improve the care and services available?
A: Dr. Sabo: Florida recently moved into the 50th position in terms of per capita spending on mental health. This often affects the most vulnerable families. It is important to contact both the state senate and the house of representatives to advocate for more funding towards mental health initiatives. When the state legislature is not providing funding it places the financial responsibility on local agencies to fund services. Many of the needed services are extremely expensive and are reimbursed at an extremely low rate or not at all. Locally, we are working extremely hard to fund-raise to meet the community need. Below are the short term initiatives of the local fundraising taken directly from the Kids Minds Matter website.
“Early intervention is absolutely critical to ensuring better outcomes for children with mental health challenges. Building a multi-faceted system will improve access to care, so we can reduce Baker Acts by 35-40%. It will be important to…
- Expand Golisano Children’s Hospital’s pediatric behavioral health clinics and add satellite clinics in South Lee, Lehigh Acres and Cape Coral
- Expand the Mental Health Navigator program to more schools. A SAMSHA grant will be submitted in early 2021 which, if funded, will bring in approximately $4 million over four years, leveraging a 3:1 match of federal dollars to KMM funds
- Expand the partnership with Healthcare Network to add additional care navigators in primary care practices
- Add 2-4 additional psychologists/psychiatrists to decrease the waitlist for mental health services
- Build on the case management program throughout Lee Health
- Add additional team members to run the support groups and trainings provided to the community
- Create an Adolescent IOP (Intensive Outpatient Program) for high-risk youth
- Develop an autism testing center to expedite diagnosis and early interventions
- Continue Mental Health Mondays and providing tips and resources virtually
- Establish telehealth kiosks in underserved communities”
Q: Staring episodes don’t seem to get caught. What can I do to get them medically documented?
A: Dr. Phillipps: Staring spells are very common in children. The main concern is that these can be caused by seizures (generalized absence vs complex partial). However, most often staring spells are related to daydreaming, inattention, drowsiness, or other behavioral causes. The best thing to do is to take note of when they started, how often they happen, how long they last, note if anything triggers them, and if the child responds to stimulation such as calling the child’s name, being touched, or waving something in front of face. If possible, video events. Notify your pediatrician about these events. If you already see a neurologist, let him or her know.
Q: Do you tend to see different signs in male vs female children? I know ADHD is like this, and often goes underdiagnosed in girls because of it.
A: Dr. Sabo: Great questions. Autism is a universal diagnosis. It is observed in all racial, ethnic and socioeconomic groups. The criteria we use for diagnosis (DSM-5) makes no differentiation for gender differences within the diagnosis. However, the research shows that Autism is diagnosed in males 4 times more often than females. There is a fair amount of debate on why. In clinical samples, females are more likely to show intellectual disabilities than males. There have also been multiple studies that examine The Autism Diagnostic Observation Schedule, second Edition (ADOS-2), which is the “gold standard” for diagnosis. Multiple studies show that higher functioning autistic females present better on the non-verbal mode of communication. This likely camouflages other diagnostic features. It is believed that cultural gender expectations/norms may account for many of these cases. That is, there are different expectations for boys than girls. For example, a toddler boy that does not play with peers may be seen as odd; where as a toddler girl might be seen as shy. Simply put, we explain away social odd female characteristics while we magnify similar males.
So to answer your question, there is no difference in the diagnostic criteria. However, similar to ADHD there are different social expectations for the two genders that likely have an impact on recognition.