Part I: A Closer Look

What is known about how parents prefer to hear news about developmental delays?

A boy and his mom

There is no single best way to present information about developmental concerns.

Most parents prefer a non-alarmist approach about a possible developmental delay.

Some parents will want a very direct approach, including an answer to “what do you think it could be?”

How would you approach parents who are overly concerned?

Holding hands

Most parents want to be heard if they raise concerns, not reassured that their child is “normal.”

Assess the parents’ knowledge of child development and what resources the parents have or use to learn about child development.

Explore why parents appear to be overly concerned. For example, is there a family history of learning problems or ASD?

What elements of this interaction are especially important?

  • Explaining “screening” as distinct from diagnosis
  • The PCP’s patience in trying to understand the parents’ concerns, even when they have failed to follow the PCP’s recommendations in the past
  • The PCP’s willingness to ask if the communication strategy she used regarding referral to the developmental specialist was clear, in a non-judgmental manner
  • The PCP offering to be available for questions, and reassuring parents she will continue to be the child’s doctor over the years
  • The PCP’s referral to early intervention services following initial concern despite lack of a definitive diagnosis and again following diagnosis
  • The PCP’s close follow up to ensure recommendations are being followed or if they need to be adjusted

What should you take into account when making referrals? Should there be variability based on individual families?

A toddler holding his care-givers hand while walking

Assess the family’s readiness for evaluation. If parents seem to be concerned about moving forward, it is important to continue to support the family.

Families can be overwhelmed by hearing difficult news and tasks associated with it. If this occurs, it might be necessary to give one task to follow through on, such as getting a hearing test or calling the early intervention agency.

The family should have frequent follow-up appointments with the PCP soon so they can be supported and continue to work through other tasks that need to be addressed.

  • How much can a family handle at each interaction?
  • Assess family support structure and family strengths
  • Individual family needs should always be considered

How would you respond to the family’s mention of the father’s brother?

A care-giver helping a little girl with her gloves.

Scientific evidence shows that ASD has a genetic component. It is not unusual to have a report of a family member with similar characteristics. Some families choose to explore the diagnosis of ASD in adult family members, but this is generally not discussed at the time of diagnosis or referral for the child.