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What should parents know about autism? Leading advocate lends advice

Q&A with Dr. Thomas Frazier, CSO of Autism Speaks

Parents of children with autism likely have a lot of questions before, during and after a diagnosis.

One of the nation's leading advocates for autism awareness has some advice.

Dr. Thomas Frazier is the chief science officer of Autism Speaks, an advocacy organization that sponsors research and conducts awareness activities throughout the country.

Frazier also is the parent of a child with autism, he has published more than 100 studies and has led the Cleveland Clinic's autism research unit.

Frazier took time out of his busy travel schedule to answer some questions on autism and provide tips for parents.

If a parent discovers his or her child has been diagnosed with autism, what should be the first priority?

Frazier: "Speak with the clinician about what they think the next steps are. Parents can also access (an) Autism Speaks 100-day kit for additional information and resources. It is important that parents maintain a relationship with a clinician who can provide guidance, re-evaluation as the child develops and support. Family and caregiver quality of life are key to successful development for all children, but especially children with autism."

Do parents have to communicate different with autistic children, and if so, how?

Frazier: "It depends on the child, their age and developmental level. For younger children with greater cognitive difficulties, communication can be a challenge. Parents may need to use short phrases, speak slower, articulate better and focus on only using phrases that the child has learned and can respond to while the child is building the ability to respond to new phrases. For older children without cognitive difficulties, communication can be quite like communication with neurotypical children. Even in these cases, though, it can be important to clarify what people are thinking and feeling to make it easier for the child to process the full situation."

Are there basic tasks parents take for granted that kids with autism might struggle with?

Frazier: "In general, parents of children with autism know their child and learn what they can and cannot do. However, there are some cases where, as parents, we forget to adapt our language to be most appropriate to the child. Some children with autism struggle with multi-step directives, and as a result, it may appear that they are noncompliant when they don’t fully understand what is being asked of them, or they are not able to hold all the information in mind when completing the task. It is crucial that parents be patient and attentive to their children so that they learn -- and remember to use language or other communication methods that are most effective and that promote success. It is also important to remember that even when everything is done well, children with autism can struggle with new situations or situations that involve lots of sensory stimulation. Building in accommodations, breaks, clear and simple communication is essential in these moments."

What exercises/activities are common to help overcome barriers created by autism?

Frazier: "There is no specific exercise or activity that works for all children with autism. Some children benefit from preparation before a challenging situation. Some children benefit from a visual schedule that describes the sequence of activities. Many children require gradual exposure to new situations to facilitate successful participation. And most children with autism require active teaching and facilitation to engage in successful peer interaction."

What do kids with autism request/need most from their parents?

Frazier: “Same as neurotypical kids: love. They also need patience, persistence and a calm demeanor. Parents of children with autism who understand how to prompt and reinforce appropriate functional behavior are the most effective parents. As with all kids, many children with autism attempt to escape demands or try to gain parental attention using negative behavior. In the case of escaping demands, it is important that parents work with therapists to require completion of at least a portion of the task (coming back and building toward full completion) before allowing escape. For situations where children use negative behavior to gain attention, it is important that parents actively teach children how to appropriately gain attention and at the same time, ignore inappropriate attempts to gain attention.”

This story was first published in 2019. It has since been updated.

About the Author:

Keith is a member of Graham Media Group's Digital Content Team, which produces content for all the company's news websites.