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Should All Children Be Tested for Autism? 

Q. I heard that Autism Spectrum Disorder (ASD) has become even more prevalent than before. Why is this happening? With ASD being as common as it is, should all children be tested for it, as they are for other things?

Also, with all of the new research and developments out there, are there ways to diagnose ASD earlier? I have one child on the spectrum, and we aren’t sure about the other one, who is still an infant. Thanks so much for your help!

A. Autism Spectrum Disorder (ASD) is a pervasive developmental disorder that impacts communication, behavior, and social interactions. What causes autism, besides certain genetic conditions, is unknown at this time, but we are learning more every day with findings from new research that keep coming to light.

One thing that is known is that ASD rates are increasing, as you mentioned. According to the CDC, as of 2008, one in 88 children in the US were diagnosed with ASD; by 2018, one in 44 children in the US were diagnosed with ASD, meaning the autism rate appeared to have doubled during those 10 years. Did it actually double, or were more cases simply being diagnosed?     

ASD Is on the Rise 

A new study by the American Academy of Pediatrics reports that diagnoses of ASD continue to rise. The findings of this new study suggest that cases of autism are being underreported, especially in those without intellectual disabilities.  

Past data suggests intellectual disabilities and autism go hand in hand. This particular study shows that this isn’t the case in most children with ASD. To conduct the study, scientists identified 4,661 eight-year-olds with ASD. Among those identified, only 32.3 percent had an intellectual disability, whereas 59.3 percent did not have any intellectual impairment.  

The team found that:  

  • Between 2000 and 2016, the rate of autism in children with intellectual disabilities increased by 200 percent, whereas the rate of autism in children without intellectual impairments showed a 500 percent increase; 
  • The study found that autism among African American children without intellectual impairments were 30 percent less likely to be identified than Caucasian children; 
  • The findings represent ASD prevalence in a metro area where services and resources are abundant; 
  • Children without intellectual disabilities living in affluent areas were 80 percent more likely to be identified with ASD, compared with children residing in underserved areas. 

According to Josephine Shenouda, DrPH, MS, an Adjunct Professor of Biostatistics and Epidemiology at Rutgers School of Public Health and co-lead study author, “(w)e expect to see autism rates continuing to rise as identification of autism is improved.” Whatever the reason, whether it be better recognition, genetic, or environmental influences, Dr. Shenouda suggests that, “to a large degree, autistic individuals without an intellectual disability are driving the increase and that the number of children with autism is likely to continue increasing.”  

Should All Children Be Tested for Autism? 

According to Dr. Shenouda, “(t)he best way to address increasing autism and to effect disparities in autism identification is through universal autism screening during the toddler period.” 

“Early screening of autism is essential to identify children early, and children from underserved communities are likely to benefit from universal autism screening,” Dr. Shenouda said. 

Dr. Shayna Newman, child psychiatrist, agreed, saying that early intervention can make all the difference because when it comes to ASD, the earlier the diagnosis, the better the outcome will be. 

Dr. Newman feels that universal screening could be beneficial. She said, “(i)t’s relatively easy to get screened for and we know from research that early intervention can change the trajectory of a child’s life, whether it’s with language issues or learning issues. Early diagnosis, early screening, assessment, and potentially diagnosis can assist the child in learning many, many skills that will be useful for them in their life.” 

Neurodevelopmental Disorders, Such as ASD, Are Being Detected as Early as Infancy 

For years, ASD was not typically diagnosed until around age three. Now, with advancements in screening methods, doctors can detect neurodevelopmental disorders such as ASD in early infancy. When a baby is born, they are typically given a hearing test. Findings from another recent study show that brain-wave data collected during this hearing test routinely given to newborns could help clinicians spot neurodevelopmental disorders such as autism in early infancy. 

The research was led by Rutgers University psychology professor Elizabeth Torres, who leads the Sensory Motor Integration Lab and the New Jersey Autism Center of Excellence. It suggests a possible approach for developing a universal screening tool for neurodevelopmental disorders with new ways for targeted personalized treatments as early as possible.  

The researchers in the study found that newborns who later received an ASD diagnosis had pronounced delays in their brainstem’s responses to sounds. Findings were as follows: 

  • On average, these newborns had a 1.76-millisecond lag — in a system that operates at a microsecond timescale — compared to newborns who developed neurotypically. 
  • These newborns may have difficulty integrating sound with other sensory streams including vision, movement, and pain because of limited access to sound frequency. 
  • These newborns may have difficulty communicating socially and learning languages. 
  • The results may explain differences in language acquisition, sensory processing, and motor control, which are all fundamental to social interactions and communication as the baby grows and matures.  
  • The results may also explain why young children with autism have excess noise in their movements, with repetitions of actions, or “stimming,” and unexpected responses to various sensory stimuli. 

“With very little effort and cost, we could build a universal screening test to eliminate disparities in infant neurodevelopment and establish normative scales of such a dynamic process,” says Torres. “This will give us the ability to measure individual departures from these neurotypical ranges, as early as possible, when the nervous system is rapidly changing and adapting to its environment, and the brain-body circuitry is forming.” She added, “(a)s a result of the extreme plasticity of an infant’s brain, the earlier the therapeutic intervention, the more effective the treatment will be.” 

ASD Isn’t Always Diagnosed 

The telltale signs of autism emerge early in life — but, as the data shows, many children with autism are not diagnosed and documented. This could change with the hearing test described above. As of now, these are some of the early signs of ASD, as described by Autism Speaks: 

  • Lack of emotional reciprocity early in life; 
  • Laser focus on what they’re interested in; 
  • Rigidity: If they can’t do something in the same way, they might not understand it and could become extremely distressed; 
  • Communication issues can be another sign that a child is on the autism spectrum. Children with autism may recite words as if they’re following a script rather than directly communicating;
  • Lack of eye contact: According to Autism Speaks, “researchers describe decreases in eye contact between two and six months of age in babies who went on to develop ASD.”
  • Lack of joint attention: Joint attention refers to two people sharing a focus on the same object after one alerts the other to the item using verbal or nonverbal cues. Babies with ASD can find it challenging to pick up on these social cues and may ignore the person or the object that they are pointing out. 
  • Not responding to their name: According to the CDC, a baby should be able to respond to their name from about six months old. However, a 2017 study found that babies developing ASD often do not respond to their name at nine months old. 
  • Difficulty with nonverbal communication: The CDC states that from around nine months, a baby should be able to point things out. Infants with ASD point and gesture much less than children who do not develop ASD. A lack of nonverbal communication could indicate delays in language development. 
  • Limited facial expressions: By the age of four months, a person can expect a baby to be able to copy facial expressions, such as smiling or frowning. A baby with ASD may respond to certain expressions or experiences with facial expressions that are inappropriate. 
  • Delays in language development: By the age of 1, a child should be able to say one to three single words and try to copy words that other people say. According to March of Dimes, about 40 percent of autistic children do not speak at all. There has been much concern over the past few years about mask use possibly causing delays in speech and language development, completely unrelated to autism. After all, a key part of a child learning to communicate is indeed watching the faces, mouths, and expressions of the people closest to them. However, there are no known studies to date showing that use of a face mask negatively impacts a child’s speech and language development, and most families during the pandemic did not wear masks inside their own homes. However, for children who already have language delays or social communication difficulties, it’s possible, according to Janice Greenberg, Director of Early Childhood Education Services at The Hanen Centre, that masks may present more challenges. According to Greenberg, children on the autism spectrum may have already found it difficult to “tune in” to nonverbal social cues, so mask-wearing may make this even more challenging. 
  • Regression: Regression is when a baby starts to lose skills they previously had, such as verbal communication or social behaviors. A study from 2015 found that close to one-third of children with ASD lose some skills around preschool age. 

For more details about ASD, please read my other articles on the subject here or visit http://www.autismspeaks.org/ 

Planning for a Loved One with ASD 

Parents of those with ASD are tasked with planning for their children throughout their lifetime, as many of them will outlive their parents but might not be able to support themselves and live independently. 

As a parent or guardian, you want to ensure that your child with ASD will remain financially secure even when you are no longer there to provide support.  A Supplemental Needs Trust (also called a special needs trust) is a vehicle that provides assets from which a person with disabilities can maintain his or her quality of life, while still remaining eligible for needs-based programs that will cover basic health and living expenses. 

More than $13 billion a year is spent to care for individuals with ASD. For the average affected family, this translates to $30,000 per year. Fortunately, there are many ways to plan for the long-term care of a disabled child. If your child with ASD will likely need care for life, it’s important to provide legal protections for your child. At the Farr Law Firm, we can guide you through this process.  

Learn more about Supplemental Needs Trusts here. 

When it comes to special needs planning, estate planning, and retirement planning, the attorneys at the Farr Law Firm can guide you through this process. Contact us to make an appointment for an initial consultation: 

Northern Virginia Special Needs Planning: 703-691-1888    
Fredericksburg, VA Special Needs Planning: 540-479-1435    
Rockville, MD Special Needs Planning: 301-519-8041    
Annapolis, MD Special Needs Planning: 410-216-0703    
Washington, DC Special Needs Planning: 202-587-2797 

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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