Understanding and Responding to Grandchildren with Autism Spectrum Disorder (Part 1)

Written by Dr. Joannie DeBrito, Family Support Specialist

We’ve probably all “been there”- out in public when we notice a child behaving in some unusual ways. He might be repeating the same words or phrases over and over or she may be flapping her arms repeatedly. Perhaps you have noticed that a child at church seems to be unable to give eye contact to others and is somewhat awkward in social situations.

In these cases, you might be observing a child with a disorder that is on the rise.

Over the past two decades, the rate of children diagnosed with autism, now referred to as Autism Spectrum Disorder (ASD), has increased significantly. This appears to be due to improved diagnostic resources, increased understanding and awareness of ASD, and an expansion of the definition of Autism. Unfortunately, sometimes ASD is also misdiagnosed by professionals who are not qualified to make a final diagnosis of ASD.

Many grandparents have contacted me over the past year, asking how to identify ASD and how they can best support grandchildren who have been diagnosed with ASD.

In this first blog, I will address and provide some background information and data that will be helpful in understanding ASD.

What is ASD?

In the 1940s, autism was described as a form of childhood schizophrenia. Over the next 70 years, the definition of Autism was expanded to include a number of related disorders, and in 2013, it was redefined as Autism Spectrum Disorder (ASD), an all-inclusive diagnosis that exists on a spectrum from mild to severe.

It’s important to recognize how much the definition has changed over the past 70-plus years because it demonstrates the fact that we continue to discover new information about the causes and symptoms of ASD. Research continues, so as more is learned about this disorder, the definition may change again. Therefore, it is important for parents and grandparents to remain abreast of the most current information available about ASD diagnosis and best treatments.

Currently, an ASD diagnosis is characterized by two groups of features:

1. Persistent impairment in reciprocal social communication and social interaction
2. Restricted, repetitive patterns of behavior, present in early childhood                                                                                   

According to the National Institute of Mental Health, ASD is described as:

“…a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Although autism can be diagnosed at any age, it is described as a ‘developmental disorder’ because symptoms generally appear in the first 2 years of life.”

Because each child diagnosed with autism has specific strengths and challenges, ASD looks different in each child. Also, because it exists on a spectrum, children with the diagnosis can range from being highly skilled to significantly challenged.

As we come in contact with children with ASD, we need to remember that God gives every one of us gifts and that includes people who are born with any kind of disability.

I Corinthians 12:4-6 says: “Now there are varieties of gifts, but the same Spirit; and there are varieties of service, but the same Lord; and there are varieties of activities, but it is the same God who empowers them all in everyone.” (ESV)

ASD Statistics/Facts

The current prevalence of people (children and adults) diagnosed with ASD is 1 in 44.

Boys are four times more likely than girls, to be diagnosed with ASD.

31% of children with ASD have an intellectual disability, 25% are in the borderline range, and 44% have IQ scores in the average to above-average range. DO NOT ASSUME THAT A VERY BRIGHT CHILD CANNOT ALSO BE ON THE ASD SCALE. 

40% of children with ASD have elevated levels of anxiety.

NOTE: Children with ASD and intellectual disability are at a higher risk of also having epilepsy than those without an intellectual disability.

ASD affects all ethnic and socioeconomic groups.

Minority groups tend to be diagnosed later and less often than non-minority groups.

Early intervention affords the best opportunity to support healthy development and deliver benefits across the lifespan.

There is no medical test for ASD.

What Causes ASD?

Research indicates that genetics are involved in the vast majority of cases and that children born to older parents are at a higher risk for having autism.

Although some thought that childhood vaccinations might be the cause of ASD, extensive research over the last two decades has concluded that vaccines do not cause ASD.

Source: https://www.autismspeaks.org/autism-statistics-asd

Recognition of Potential Problems

In general, if you notice unusual behaviors in a grandchild that are not usually seen at his or her age, you might want to encourage your son or daughter to have the child evaluated for ASD or another similar disorder.

Pay particular attention to these symptoms:

• Loss of previously acquired speech, babbling, or social skills
• Avoidance of eye contact
• Persistent preference for solitude
• Difficulty understanding other people’s feelings
• Delayed language development
• Persistent repetition of words or phrases (echolalia)
• Resistance to minor changes in routine or surroundings
• Restricted interests
• Repetitive behaviors (flapping, rocking, spinning, pacing, etc.) for which there does not appear to be an obvious purpose
• Unusual and intense reactions to sounds, smells, tastes, textures, lights, and/or colors

In addition to these behaviors, there are some other things to watch for such as:

• Failure to accomplish what you know to be normal developmental skills at various ages

• Persistence of the problem behaviors over a period of 6 months or more

• Presence of the problem behaviors in all environments in the child’s life

• Evidence that the problem behaviors significantly interfere with the child’s ability to complete daily age-appropriate tasks

It’s important to be kind and patient with children who are displaying some of these symptoms or tendencies. While they can sometimes appear to be related to stubbornness, if a child has ASD (unknown to you) and you try to force him to change when he can’t, it can lead to the child feeling ashamed and being resistant to help.

Heed the words of Colossians 3:12: “Put on then, as God’s chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience.”

Diagnosis

Keep in mind that the diagnosis is most likely to be thorough and accurate if made by a:

• Developmental Pediatrician
• Child Psychologist
• Child Psychiatrist
• Pediatric Neurologist

Many other disorders can look like ASD, and it is a complicated disorder so it is vitally important for an individual suspected of having ASD to be diagnosed by a specialist. The vast majority of mental health professionals are not qualified to make a final diagnosis of ASD.

I worked on an interdisciplinary team doing developmental assessments of children suspected of having disabilities for three years. We used many different assessment tools and techniques to evaluate each child. When we had evidence that a child was likely somewhere on the ASD scale, we still referred to one of the professionals listed above or to the ASD assessment team at a local children’s hospital for a final diagnosis.

Incidentally, every state and territory of the US is required to provide some free or low-cost evaluation services for children 0-3 years of age- typically in each public school district- and to provide some treatment (often in the home) for children diagnosed with disabilities prior to beginning school. Once a child enters school, he or she may continue to be provided treatment at school. No parent can be denied early intervention services that require a fee because of their inability to pay.

If your children are not aware of this resource, let them know that this is a great place to start the evaluation process for ASD, and if needed, to receive referrals to professionals who are qualified to make a final diagnosis.

Conclusion

In this part of my two-part series on ASD, I have provided some general information, and some of it may feel overwhelming to those of you coping with ASD in a grandchild. If so, I encourage you to suspend your concerns and instead, focus on hope by remembering these words from Paul.

Romans 5:3-4 says “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.” (ESV)

There is great hope for improvement in children with ASD with good treatment and the support of a loving family. In Part 2 of this series, I will provide some specific ways that you can be helpful to your children in their parenting as well as be encouraging growth in your grandchild. Read part two here!